Showing posts with label HIV. Show all posts
Showing posts with label HIV. Show all posts
Wednesday, 7 June 2017
HIV Related Neuropathy
Today's video is an Australian view of how HIV can cause neuropathy, whether from the virus itself or the drugs. It comes from PainClinician.com (see link below) and is basically a teaching video for other medical professionals. The difference with most of the other neuropathy videos posted here on the blog, is that if this is what medical students are learning, then we can look at the disease from the point of view of the doctors who treat us. It seems to be full of up to date information and reflects modern medical thinking but apart from the odd scientific term here and there, which may not be so easily understood, the vast majority of the 11 minutes, is pretty interesting to the average neuropathy and HIV patient and explains a few areas which may have previously seemed vague.
http://painclinician.com/video/hiv_related_neuropathy
Friday, 5 May 2017
HIV And Neuropathic Pain Vid
Today's video is the second this week discussing neuropathy as a result of HIV or its treatment and as this is the core subject of this blog, it is worth viewing for those who find themselves in that position (from between 33% and 50% of all sufferers). Although neuropathy is much the same problem, with many of the same symptoms, irrespective of the cause, there are reasons why people with other conditions such as diabetes, cancer and HIV, are more prone to suffering nerve damage. This may help people living with HIV better understand why they seem to have been landed with yet another serious problem.
Neuropathic Pain in HIV Disease
PAINClinician Uploaded on 23 Feb 2012
Professor of Neurology
Mount Sinai School of Medicine
https://www.youtube.com/watch?v=FDzbkYx_LKU
Friday, 7 April 2017
Acupuncture And Amitriptilyine Trial For HIV Neuropathy
Today's long (apologies) post from jama.jamanetwork.com (see link below) sort of follows on from yesterday's post about amitriptyline and gives a historical perspective to the arguments that amitriptyline has never been proved to help relieve neuropathy symptoms. In this case, the trial subjects were neuropathy sufferers living with HIV. It's quite a read but an interesting one and gives us an insight into how such studies are carried out, what their objectives are and what sort of conclusions they reach. It's not often that we, as patients, get the chance to see how the system works and be able to examine independent studies for ourselves but this one does. Also interestingly, it looks at a study of how a complimentary treatment (acupuncture) and a standard medical treatment can be evaluated together. It comes from 1998 but as yesterday's post shows, some things never change and that's not always to our benefit. Why, for instance, are we still being prescribed amitriptyline for neuropathic pain, when it's consistently proved to be no better than a placebo?
n.b. You may have to refer to the original link to be able to look at the tables in detail.
Judith C. Shlay, MD; Kathryn Chaloner, PhD; Mitchell B. Max, MD; Bob Flaws, Dipl, Ac; Patricia Reichelderfer, PhD; Deborah Wentworth, MPH; Shauna Hillman, MS; Barbara Brizz, BSN, MHSEd; David L. Cohn, MD; for the Terry Beirn Community Programs for Clinical Research on AIDS
November 11, 1998, Vol 280, No. 18
JAMA. 1998;280(18):1590-1595. doi:10.1001/jama.280.18.1590.
ABSTRACT
Context.— Peripheral neuropathy is common in persons infected with the human immunodeficiency virus (HIV) but few data on symptomatic treatment are available.
Objective.— To evaluate the efficacy of a standardized acupuncture regimen (SAR) and amitriptyline hydrochloride for the relief of pain due to HIV-related peripheral neuropathy in HIV-infected patients.
Design.— Randomized, placebo-controlled, multicenter clinical trial. Each site enrolled patients into 1 of the following 3 options: (1) a modified double-blind 2 × 2 factorial design of SAR, amitriptyline, or the combination compared with placebo, (2) a modified double-blind design of an SAR vs control points, or (3) a double-blind design of amitriptyline vs placebo.
Setting.— Terry Beirn Community Programs for Clinical Research on AIDS (HIV primary care providers) in 10 US cities.
Patients.— Patients with HIV-associated, symptomatic, lower-extremity peripheral neuropathy. Of 250 patients enrolled, 239 were in the acupuncture comparison (125 in the factorial option and 114 in the SAR option vs control points option), and 136 patients were in the amitriptyline comparison (125 in the factorial option and 11 in amitriptyline option vs placebo option).
Interventions.— Standarized acupuncture regimen vs control points, amitriptyline (75 mg/d) vs placebo, or both for 14 weeks.
Main Outcome Measure.— Changes in mean pain scores at 6 and 14 weeks, using a pain scale ranging from 0.0 (no pain) to 1.75 (extremely intense), recorded daily.
Results.— Patients in all 4 groups showed reduction in mean pain scores at 6 and 14 weeks compared with baseline values. For both the acupuncture and amitriptyline comparisons, changes in pain score were not significantly different between the 2 groups. At 6 weeks, the estimated difference in pain reduction for patients in the SAR group compared with those in the control points group (a negative value indicates a greater reduction for the "active" treatment) was 0.01 (95% confidence interval [CI], −0.11 to 0.12; P =.88) and for patients in the amitriptyline group vs those in the placebo group was −0.07 (95% CI, −0.22 to 0.08; P=.38). At 14 weeks, the difference for those in the SAR group compared with those in the control points group was −0.08 (95% CI, −0.21 to 0.06; P=.26) and for amitriptyline compared with placebo was 0.00 (95% CI, −0.18 to 0.19; P=.99).
Conclusions.— In this study, neither acupuncture nor amitriptyline was more effective than placebo in relieving pain caused by HIV-related peripheral neuropathy.
PERIPHERAL NEUROPATHIES are diagnosed in 30% to 35% of patients with human immunodeficiency virus (HIV) and cause pain and dysesthesias.1,2 Symptomatic treatment includes antidepressants, nonnarcotic and narcotic analgesics, anticonvulsants, and acupuncture.2,3 The use of these treatments is based on anecdotal4 information and trials in other disease conditions.5
We chose to examine the efficacy of 2 commonly used treatments, amitriptyline hydrochloride and acupuncture, for HIV-related peripheral neuropathy. Amitriptyline is frequently prescribed for neuropathic pain and has been shown to be an effective treatment for diabetic, hereditary, toxic, and idiopathic neuropathies.6,7
Although several trials that reported examining acupuncture for chronic painful conditions claim efficacy,8,9 these studies have methodological limitations, including small sample sizes and inadequate controls for the nonspecific effects of acupuncture.9- 11 Meta-analyses of studies of acupuncture for chronic pain show a response rate of approximately 70% for acupuncture, 50% for "sham" acupuncture (needling points not considered effective), and 30% for control treatments, such as sham transcutaneous electrical nerve stimulation.9,10,12,13
To evaluate the effect of both a nonstandard and standard medical therapy for peripheral neuropathy, we performed a multicenter, modified double-blind, randomized, placebo-controlled study of the separate and combined efficacy of a standardized acupuncture regimen (SAR) and amitriptyline for the relief of pain caused by HIV-related peripheral neuropathy.
METHODS
Study Design
We used a 2×2 factorial design to determine whether SAR, amitriptyline, or the combination was more effective than placebo. The SAR consisted of acupuncture points chosen by the study acupuncturists and several consultants to be effective for peripheral neuropathic pain. This regimen was compared with control points that were not "true" points defined by any standard acupuncture text14 (Figure 1). We compared the efficacy of amitriptyline with placebo capsules of identical appearance. Enrollment in the factorial design began in May 1993, but patients at some sites were reluctant to be randomized to receive amitriptyline and some clinicians were unwilling to provide amitriptyline to their patients because it was a commonly abused drug in their communities. The study design was modified in March 1995 so that sites could choose only 1 of 3 options. Each site could (1) continue to enroll into the factorial design (factorial option), (2) enroll into a single-factor design of SAR vs control points (acupuncture option), or (3) enroll into a single-factor design of amitriptyline vs placebo (amitriptyline option) (Figure 2).
Figure 1.—Standardized acupuncture regimen and control points.
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Figure 2.—The standardized acupuncture regimen (SAR) vs control points (CPs) compares n1 + n3 + n5 with n2 + n4 + n6. The amitriptyline vs placebo compares n1 + n2 + n7 + with n3 + n4 + n8.
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Randomization schedules were prepared using random blocks stratified by unit. Patients were randomized to treatment by the study units by telephoning the Statistical Center at the University of Minnesota, Minneapolis. The unit pharmacists were the only people unblinded to the placebo vs amitriptyline assignment, and the acupuncturists were the only people unblinded to the SAR vs control points assignments. The pain diaries and the assessments of pain relief were collected by study staff who were blinded to the treatment assignments.
Study Population
Patients were recruited from 11 units of the Terry Beirn Community Programs for Clinical Research on AIDS, an organization sponsored by the National Institutes of Health, which conducts clinical trials in primary care settings. The study was approved by each institutional review board. All participants gave written informed consent. To be eligible, participants had to be aged 13 years or older; have documented HIV infection; have symptoms of HIV-related lower extremity peripheral neuropathy, diagnosed by a physician based on history and clinical examination; and have completed a baseline pain diary prior to randomization. Antiretroviral therapy was allowed and dosages of analgesic medication or herbal therapies used at randomization were maintained or reduced. The initiation of new treatments during the study was discouraged but allowed when necessary. Patients were excluded if they were being treated for an acute opportunistic infection or malignancy except nonsystemic Kaposi sarcoma, were pregnant, or had taken a tricyclic antidepressant or monoamine oxidase inhibitor 2 weeks before randomization.
Treatment Regimens
For the acupuncture comparison, patients were randomly assigned to receive SAR or control points twice weekly during a 6-week induction phase, followed by weekly treatment during an 8-week maintenance phase. This SAR was based on a Chinese theory that peripheral neuropathy caused by diabetes and HIV-related peripheral neuropathy have similar mechanisms. The SAR included spleen points 9, 7, and 6, with the additional supplemental points of Ba Feng (M-LE-8) for complaints of pain or numbness in the toes, Ran Gu (kidney 2) for complaints of pain or numbness in the soles, and Tai Ki (kidney 3) for complaints of pain or numbness in the heel (Figure 1).14 The control points were located on the back of the leg (Figure 1). For the SAR and control points, acupuncture needles were inserted to a specified depth. Each location was manipulated both superiorly and inferiorly. Then the needles were reinserted into the specified point. After 10 to 15 minutes, the needles were remanipulated and replaced into the original location for another 5 to 10 minutes. The depth of insertion was between 1.28 to 2.54 cm (0.5 to 1.0 in) for spleen point 9, 2.54 to 3.81 cm (1.0 to 1.5 in) for spleen point 7, and 1.5 to 3.05 cm (0.6 to 1.2 in) for spleen point 6. For the control points, insertion was less than 1.28 cm (0.5 in). Study acupuncturists received standardized training in the technique. In addition, a videotape of the acupuncture and the control treatment was provided to each of the acupuncturists in the study. To maintain blinding and to determine the need for supplemental points, the acupuncturists asked all patients a series of standard questions, irrespective of treatment arm. For those in the SAR group, spleen points 9, 7, and 6 were always used. Supplemental acupuncture points were used only if the patient answered "yes" to the corresponding question. The control points consisted of only 3 specified points.
For the amitriptyline comparison, the patients were randomized to receive a 14-week course of either amitriptyline or placebo capsules by mouth once a day. They were instructed to take them between 1 to 2 hours before bedtime. An initial daily dose of 25 mg of amitriptyline hydrochloride was increased every 2 to 3 days until a maximum dosage of 75 mg/d was reached.15,16 The placebo capsules were identical in appearance and taste to the active capsules. Patients were followed up for the 14-week study period and for adverse event monitoring for an additonal 8 weeks after the study treatment had discontinued.
Results were monitored by the HIV Therapeutic Trials Data Safety and Monitoring Board of the National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Md. Data monitoring used the Lan–De Mets method17 as a guideline for early stopping to account for increased type I error probability by examining the data before the designed study end.
Evaluation
Patients rated their pain in a diary once daily, choosing from the Gracely scale of 13 words that describe the intensity.18 The scale ranges from no pain (0.0), weak (0.45), mild (0.74), moderate (1.09), strong (1.36), to extremely intense (1.75). The words had been assigned magnitudes on the basis of ratio-scaling procedures that demonstrated internal consistency, reliability, and objectivity.18 The scale has distinguished active from control interventions in experimental and clinical pain studies.6,18,19 At the end of both the induction and maintenance phases, patients reported their global pain relief (complete, a lot, moderate, slight, none, or worse) after they were asked the following question: "Since the beginning of the study, how would you rate the relief of pain and/or discomfort in your legs and feet?" A study physician, trained in neurologic examination, tested the patient at randomization and at 14 weeks. A neurologic summary score was computed as an average of 3 separate scores for muscle strength, sensory ability, and reflex. Each physician who performed the neurologic assessment reviewed a videotape that detailed how the examination was to be completed. The patients also completed a self-administered, 39-item, quality-of-life assessment tool.20 The complete tool, consisting of 11 different dimensions, was administered at baseline and 14 weeks, and the dimension corresponding to physical functioning was also administered at 6 weeks. To assess the effectiveness of the blinding, all patients were asked to guess their treatment assignments at 14 weeks. Patients were monitored for grade 4 adverse events and death. Adverse experiences occurring within 8 weeks of study treatment were graded on a 5-point severity scale (grade 5 corresponding to death) according to a standardized toxicity scale. Any grade 4 or 5 event was reportable irrespective of presumed relationship to study treatment.
Statistical Analysis
Comparison of treatment groups for the primary end point of change in pain, as measured by the pain diary, used a linear model with baseline characteristics, clinical unit, and option (factorial or single factor) as covariates. If the average weekly pain score for the sixth week of treatment was present, it was used. If it was missing, the closest weekly average within the 6-week visit window of 4 to 10 weeks was used. Similarly, this was done for the 14-week end point and the visit window of 11 to 16 weeks. A linear model repeated measures analysis of the weekly pain averages was also performed, with the same explanatory variables.21 Estimates of the difference between SAR and control points were calculated for each of the 14 weeks. The global pain relief rating was analyzed using a log-linear model, with likelihood ratio tests for differences among treatment groups, which were adjusted for option.22
We verified that results from the 3 treatments could be pooled by checking that the interaction term between acupuncture and amitriptyline in the factorial option and the option by treatment interaction were nonsignificant.
Secondary outcomes were the permanent discontinuation of study treatments, changes in quality of life, and changes in neurologic summary scores, which were analyzed similarly to the primary end point. All analyses were on an intent-to-treat basis. The evaluation of the blinding compared the patients' guesses of the therapy received with the treatment group. Using a log-linear model, we adjusted for option and for whether the patient reported moderate or more pain relief with the 14-week global pain relief rating.
For the original 2×2 factorial design, a sample size of 260 patients was calculated to provide a 90% power of detecting a mean difference between treatments of 0.20 (half the difference between "moderate" and "mild" pain) on the Gracely pain intensity scale using a type I error of .05 (2-sided). After the study design was modified, sample size requirements were estimated at 260 per group. In February 1997, the monitoring board recommended closing the study because it concluded that the results were definitive for both acupuncture and amitriptyline comparisons.
RESULTS
Study Population
From May 1993 to February 1997, 250 patients were enrolled. Of those, 239 were in the acupuncture comparison (125 in the factorial option and 114 randomized to SAR or control points), and 136 were in the amitriptyline comparison (125 from the factorial option and 11 randomized to either active or placebo amitriptyline) (Figure 2). Baseline characteristics (Table 1) were similar in the active and control groups for both comparisons.
Table 1.—Baseline Characteristics of Study Participants*
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Effects of Treatment
SAR vs Control Points.— The change in pain was not significantly different between the 2 groups at either 6 or 14 weeks (Table 2). Both groups showed improvement in pain from an average intensity of "moderate" to "mild" (Figure 3). The estimated difference of the SAR group compared with the control points group was 0.01 at 6 weeks (95% confidence interval [CI], −0.11 to 0.12; P =.88) and −0.08 at 14 weeks (95% CI, −0.21 to 0.06; P=.26). At 6 weeks, the SAR group had less pain relief than patients in the control points group by 0.01 U and at 14 weeks, the SAR group had 0.08 U more relief than patients in the control points group. Repeated measures analyses of weekly pain averages during the entire 14-week period gave weekly effects, which were small and nonsignificant (P values ranging from .10 to .94).
Table 2.—Mean Changes in Weekly Pain Diary Scores, Neurologic Score, and Quality of Life at 6 and 14 Weeks*
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Figure 3.—Average pain intensity scores for single factor options by study week. The mean weekly values of the descriptors of pain intensity are plotted. There was no statistically significant difference between the effects of the standardized acupuncture regimen (SAR) vs control points or between amitriptyline vs placebo. Pain intensity is described and rated as no pain (0.0), faint (0.04), very weak (0.36), weak (0.45), very mild (0.59), mild (0.74), moderate (1.09), barely strong (1.10), slightly intense (1.35), strong (1.36), intense (1.59), very intense (1.64), and extremely intense (1.75).18
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There were no significant differences in the quality of life, neurologic summary score (Table 2), number of grade 4 adverse events, deaths, or discontinuations. By 14 weeks, 20% of patients randomized to the SAR group and 25% of those randomized to control points group had discontinued treatment. Three patients assigned to the SAR option and 10 assigned to the control points experienced a grade 4 adverse event (P=.06).
The difference in the global pain relief rating between the 2 groups was not significant at 6 weeks (P=.65). However, at 14 weeks, there was a nominally significant difference (P=.03) with a slightly higher proportion of patients in the SAR group reporting moderate or more pain relief than those in the control points group (Table 3). However, after adjustment for multiple comparisons, the result is not significant.
Table 3.—Global Pain Relief Rating at 6 and 14 Weeks*
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Amitriptyline vs Placebo.— The change in pain score at 6 and 14 weeks was not significantly different between the active and placebo groups (Table 2). As with the SAR vs control points comparison, both groups showed improvement over time (Figure 3). The estimated difference of amitriptyline compared with placebo was −0.07 at 6 weeks (95% CI, −0.22 to 0.08; P=.38) and 0.00 at 14 weeks (95% CI, −0.18 to 0.19; P =.99). That is, at 6 weeks, patients taking amitriptyline had more pain relief by 0.07 U than those taking placebo and there was no difference at 14 weeks. Repeated measures analyses of weekly pain averages indicated that the largest beneficial effect was at week 3 (P=.05), but after adjusting for multiple comparisons, the result was not statistically significant.
There were no statistically significant differences in quality of life, neurologic summary scores (Table 2), number of grade 4 adverse events, or deaths. Six patients assigned to the amitriptyline and 2 assigned to placebo options experienced grade 4 adverse events (P=.20). By 14 weeks, 35% of patients randomized to either the amitriptyline or placebo groups had discontinued drug treatment. The difference in the global pain relief rating between the 2 groups was not significant at 6 weeks (P=.68) or 14 weeks (P=.81) (Table 3).
Factorial Option.— The test for interaction in change of pain between the 2 factors was not significant at either 6 or 14 weeks (P=.17 and P =.31, respectively). There was no significant difference in the change in pain among the 4 groups at either 6 or 14 weeks (P=.37 and P =.64, respectively). All study groups in the factorial option showed improvement in pain.
Completeness of Data
Figure 2 shows the number of patients providing pain diary data and global pain relief ratings at 6 and 14 weeks. To examine the sensitivity of the conclusions to missing data, the analyses were repeated using 2 common methods to impute missing data. The first assumes that the patients' missing data indicated no change in their pain from baseline; the second uses the last value of the weekly pain reported to calculate the end point. Under both methods to impute the missing pain diary data, the results of the study did not reach statistical significance for either comparison at either 6 or 14 weeks.
Assessment of Treatment Blinding
For the acupuncture comparison, although the patients' guesses and the treatment assignments were not independent (P=.007, data not shown), there was a strong association between the guess and the global pain relief rating. Those reporting moderate or more relief at 14 weeks tended to guess that they received the SAR. After adjusting for option and the reported relief being moderate or more, the patients' guesses and the treatment assignments were not independent (P=.02), but the association was small. This differed in the amitriptyline comparison, in which a large proportion of patients correctly guessed the study treatment, irrespective of their level of pain relief (P<.001) (Table 4).
Table 4.—Effectiveness of Participants' Blinding to Treatment Assignment*
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COMMENT
The main findings of this study show that treatment with this SAR had little or no effect on HIV-related peripheral neuropathy compared with the control points. Similarly, amitriptyline, as commonly used, was not significantly more effective than placebo (Table 2 and Figure 3). All treatment groups improved during the study period by the amount hypothesized in the design, suggesting that the modest decline in pain scores in all groups was either attributable to a placebo effect or patients entered the study at times of symptomatic flares and improved spontaneously thereafter.
For the acupuncture comparison, the results were strengthened by 2 methodological features of the trial. First, the sample size of approximately 120 patients per treatment group is many times larger than those in previously published trials of acupuncture,9 and the CIs were narrow, making it unlikely that a large positive treatment effect was missed by chance. Second, the control points appeared reasonably effective in preserving the blinding (Table 4). Many of the study clinicians and, presumably, the study participants were favorably disposed toward acupuncture. If patients were able to guess their treatment better than randomly, the resulting placebo effects would be expected to bias the result in favor of this SAR,10,12,24 thus making our finding of a similar effect even more convincing.
We cannot completely rule out the possibility that the SAR had a modest and delayed analgesic effect, in view of the nominally significant result of SAR compared with control points on the global pain relief rating at 14 weeks, although this was not seen at 6 weeks. This is unlikely, however, in view of the finding of no significant difference in the pain diary scores. Our study was designed with a sample size that provided sufficient power to detect even a small difference between the SAR and control points. The CIs at both 6 and 14 weeks rule out any clinically meaningful beneficial effects of SAR based on the primary end point of the pain diary scores.
One possible explanation for the lack of efficacy of the SAR is that we chose the wrong "active points." Consensus on the SAR was reached by 8 acupuncturists before protocol implementation. Another explanation is that the use of nonclassical points as a control provided a real effect and was not an inert control. There is evidence from animal and human studies that acupuncture at either classical or nonclassical locations may have analgesic effects9,25,26 by mechanisms such as the release of endogenous opioids27 or activation of other brain and spinal cord pathways that reduce pain.28
There is controversy over what constitutes an acceptable control group for acupuncture studies.8,29 It is possible that the novelty of an experience like acupuncture may generate a placebo analgesic effect quite apart from specific effects produced by needling specific points.30 Unless the study includes a "sham" acupuncture group as a control, such nonspecific effects may bias toward a result in favor of the active intervention.
The SAR chosen for this study differs from the practice of most acupuncturists, who treat patients with individualized regimens.31 We chose to study standardized points to test the hypothesis that these specific points promote analgesia for chronic foot and leg pain13 and because such a study is easier to blind and replicate. If the acupuncturists had used individualized treatment, the results would not be generalizable to other acupuncturists, and the treatment, if efficacious, could not be used by other practitioners. Our approach enabled us to derive a conclusion about these acupuncture points but not about individualized treatments.
Amitriptyline is used in the treatment of HIV-related peripheral neuropathy32 but was not effective in this study. The lack of efficacy at 14 weeks was confirmed by the analysis of the secondary end points. Although the 6-week CI did not completely rule out the beneficial effect of 0.20 that the study was designed to detect, there was no supporting evidence of beneficial effect from any of the secondary end points. In addition, another study in HIV-related peripheral neuropathy agrees with our findings.33 The indication that the blinding was not maintained also confirms the lack of efficacy because unblinding tends to bias toward a hypothesized active intervention.24,34
It is possible that a higher dose of amitriptyline would have resulted in a larger treatment effect. We chose this dose based on common clinical practice and on the only 2 published prospective randomized dose-response studies of tricyclic antidepressants used for chronic pain.15,16
No previously controlled trials of amitriptyline in neuropathic pain have followed up patients for longer than 8 weeks.33,35 Clinical trials of amitriptyline for neuropathies of diabetic and nondiabetic etiologies have shown larger, short-term, clinically meaningful effects.6,7,19 Mechanisms for this include facilitation of the analgesic action of norepinephrine and serotonin released by endogenous analgesic systems16,19 and the blockade of sodium channels in peripheral sprouts from damaged nerves.36 Presumably, the neuropathological features of the HIV-associated distal axonal neuropathy generate painful discharges resistant to the analgesic actions of tricyclic antidepressants.37,38
In conclusion, this is the largest reported randomized, placebo-controlled, clinical trial of symptomatic treatment for HIV-related peripheral neuropathy. Overall, our results indicate that neither this SAR given over 14 weeks nor amitriptyline hydrochloride, 75 mg/d, was effective in relieving pain and neither therapy can be recommended for the treatment of HIV-related peripheral neuropathy. Additional clinical trials are needed because there are no effective treatments for this chronic debilitating condition.39
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Tyor WR, Wesselingh SL, Griffin JW. et al. Unifying hypothesis for the pathogenesis of HIV-associated dementia complex, vacuolar myelopathy, and sensory neuropathy. J Acquir Immune Defic Syndr Hum Retrovirol.1995;9:379-388.
39
Simpson DM, Dorfman D, Olney RK. et al. Peptide T in the treatment of painful distal neuropathy associated with AIDS: results of a placebo-controlled trial. Neurology.1996;47:1254-1259.
http://jama.jamanetwork.com/article.aspx?articleid=188146
Saturday, 11 March 2017
HIV Related Sensory Neuropathy
Today's post from iasp.files.cms-plus.com (see link below) looks at HIV-related neuropathy and gives the facts, including the depressing thought that they're still not sure why it happens in such large numbers among people living with HIV. Is it the drugs, or is it HIV itself that brings on nerve damage? Does it actually matter for the patient? Not really; what ever the pathogenesis for your neuropathy is, the important thing is dealing with the symptoms when it occurs. The advantage of articles like this is that they are designed for health professionals, so you can be pretty sure that the facts are correct. The problem with neuropathy however, is that there are so many unknown factors that the reader knows there is more information to be uncovered in the future.
International Association for the Study of Pain 2014-2015
Neuropathic Pain
Neuropathic pain (see the fact sheet on “What Is Neuropathic Pain?”) can result from nerve injury or disease affecting the peripheral or central somatosensory nervous systems.
Definition
• HIV-associated sensory neuropathy (HIV-SN) is a distal symmetrical polyneuropathy that develops in individuals infected with the human immunodeficiency virus (HIV). The neuropathy is commonly painful.
• The terms HIV-associated distal symmetrical polyneuropathy (HIV-DSP) and antiretroviral toxic neuropathy (ATN) are sometimes used when referring to HIV-SN. HIV-DSP typically describes neuropathy that develops before any
exposure to neurotoxic antiretroviral drugs. ATN describes neuropathy that coincides with starting antiretroviral therapy, and this drug exposure is presumed to be the inciting event. There are no clear differences in the clinical
features of ATN and HIV-DSP.
Clinical Features
• Between 40% and 90% of patients report having pain, which often is “burning” in character.
• Other common symptoms include numbness and paresthesia (e.g., pins-and-needles and tingling).
• Symptoms are typically experienced, in common with other distal symmetrical polyneuropathies, in the feet and sometimes the hands.
• Bedside clinical examination typically reveals the bilateral presence of one or more of the following signs in a “stocking and glove” distribution: altered pinprick sensation, absent or reduced deep-tendon reflexes, and an
absent or reduced sense of vibration.
Epidemiology
• HIV-SN is the most common cause of peripheral nerve dysfunction in HIV-infected individuals.
• The neuropathy affects between 30% and 60% of ambulatory HIV-positive individuals, meaning that an estimated 10.5 to 21 million individuals have the neuropathy and are at a high risk of having pain.
• Increasing age and height, any exposure to neurotoxic antiretroviral drugs (e.g., stavudine and didanosine), and worsening infection in individuals not on antiretroviral therapy have been consistently identified as risk factors for
developing the neuropathy.
• Despite the strong association between HIV-SN and neurotoxic antiretroviral use, the neuropathy still affects about 45% of individuals only ever exposed to newer therapies.
• Other possible risk factors include exposure to other causes of peripheral neuropathy (e.g., having diabetes mellitus or receiving isoniazid therapy for tuberculosis infection), being female, and using protease inhibitors.
• Important risk factors for developing a painful HIV-SN include having asymptomatic HIV-SN, exposure to neurotoxic antiretroviral drugs, and having major depression.
• Higher viral load, reduced intraepidermal nerve fiber density, and higher levels of pain catastrophizing are associated with greater pain intensity in individuals with painful HIV-SN.
Impact
• Painful HIV-SN is associated with lower health-related quality of life, lower independence in activities of daily living, and increased risk of having major depression.
• Pain severity is positively correlated with poorer quality of life and with greater dependence, unemployment, and depressive symptoms.
Pathogenesis
• The pathogenesis of HIV-SN has yet to be to be fully explained.
• HIV-DSP is likely to be a result of interactions between HIV, chemokine-like molecules, and host immune cells (particularly macrophages) that release neurotoxic cytokines. The ultimate consequence of this process is a “die-
back” axonopathy.
• ATN is likely to result from disruption of mitochondrial function by neurotoxic antiretroviral drugs, which contributes to the development of the neuropathy in susceptible individuals. A diagnosis of ATN does not exclude the possibility of pre- or coexisting nerve fiber damage by the mechanisms thought to be responsible for HIV-DSP.
• Genetic studies support a role for mitochondrial dysfunction and inflammation in the pathogenesis of HIV-SN.
Treatment
• There is evidence of a strong placebo response in clinical trials of analgesics tested in patients with painful HIV-SN compared to other neuropathic pain conditions.
• This strong placebo response has complicated attempts to identify treatments that are superior to placebo at relieving the painful symptoms of the neuropathy. Thus, there is a lack of evidence to support the use of many drugs shown to be beneficial in other neuropathic pain states, such as postherpetic neuralgia and painful diabetic polyneuropathy. Only the high-dose capsaicin patch has some evidence of efficacy superior to placebo.
References
1.
Dorfman D, George MC, Schnur J, Simpson DM, Davidson G, Montgomery G. Hypnosis for treatment of HIV neuropathic pain: a preliminary report.
Pain Med 2013;14:1048–56.
2.
Ellis RJ, Rosario D, Clifford DB, McArthur JC, Simpson D, Alexander T, Gelman BB, Vaida F, Collier A, Marra CM, Ances B, Atkinson JH, Dworkin RH,
Morgello S, Grant I. Continued high prevalence and adverse clinical impact of human immunodeficiency virus-associated sensory neuropathy in
the era of combination antiretroviral therapy: the CHARTER Study. Arch Neurol 2010;67:552–8.
3.
Kamerman PR, Moss PJ, Weber J, Wallace VCJ, Rice ASC, Huang W. Pathogenesis of HIV-associated sensory neuropathy: evidence from in vivo and
in vitro experimental models. J Peripher Nerv Syst 2012;17:19–31.
4.
Kamerman PR, Wadley AL, Cherry CL. HIV-associated sensory neuropathy: risk factors and genetics. Curr Pain Headache Rep 2012;16:226–36.
5.
Phillips TJC, Brown M, Ramirez JD, Perkins J, Woldeamanuel YW, Williams ACDC, Orengo C, Bennett DLH, Bodi I, Cox S, Maier C, Krumova EK, Rice
ASC. Sensory, psychological, and metabolic dysfunction in HIV-associated peripheral neuropathy: a cross-sectional deep profiling study. Pain
2014;155:1846–60.
6.
Phillips TJC, Cherry CL, Cox S, Marshall SJ, Rice ASC. Pharmacological treatment of painful HIV-associated sensory neuropathy: a systematic review
and meta-analysis of randomised controlled trials. PLoS One 2010;5:e14433.
Copyright ©2014 International Association for the Study of Pain
http://iasp.files.cms-plus.com/AM/Images/GYAP/HIV%20Associated.pdf
Wednesday, 8 March 2017
Problems With HIV Drug Side Effects Try Acupuncture
Today's post from pacificcollege.edu (see link below) is a general article about the benefits of acupuncture for relieving the side effects of HIV combination drugs. It also specifically references neuropathy which may be of interest to regular readers. Many younger people, especially in the West, where HIV drugs have been significantly refined to reduce side effects considerably over the last few years, may well shrug their shoulders here and say that they have no side effect issues from combination therapy. However, the vast majority of people across the world who are living with HIV haven't achieved that luxury yet. They have to remain on older drug combinations because of resistance issues if they change, or non-availability and they may well have been living with side effects for so long that it's become part of their daily lives. In these cases, this article may be of value. It is important to consult a qualified acupuncturist who knows what he/she is doing and although it is relatively inexpensive compared to many therapies, cost may still be an issue. However, if you can afford it and feel you may benefit, why not try acupuncture/acupressure therapy. If you achieve relief from the symptoms, you may well be able to cut out, or reduce, other (non-HIV) drugs used to control pain.
No date or author provided
As drug cocktails continue to be used as a course of treatment for those who have HIV and AIDS, more patients are suffering through debilitating side effects that are caused by these medications. Often patients complain of a wide range of symptoms including, night sweats, nausea, vomiting, depression, insomnia, anxiety, peripheral neuropathy, muscle pains, and sinus congestion. However, acupuncture is now being used to alleviate some symptoms brought on by the powerful drugs. These treatments have been shown to boost the immune system and help fight the side effects brought on by HIV and AIDS.
Redge Norton of the San Francisco AIDS Foundation uses acupuncture, massage and nutritional therapy to combat the side effects of the powerful drugs. "It really helped to get my appetite back to normal," said Norton. "And I feel more like myself again."
Acupuncture is commonly thought of as an alternative form of therapy, although its history as a treatment for physical ailments predates the era of laboratory-produced drugs by several thousand years. Practitioners of this ancient tradition choose from a variety of treatment modalities when developing an individual treatment regimen for a patient. In addition to acupuncture, these modalities include therapeutic massage, stress reduction techniques, and the application of heat and herbs that is known as moxabustion.
A significant number of primary care providers have come to recognize that such therapies should not be thought of as alternatives to Western medicine, but rather as complementary therapies - therapies used in conjunction with, not instead of, conventional drug treatments.
Acupuncture may help relieve bloating, cramping, and appetite loss among HIV-infected people taking drug cocktails to keep the virus in check. In 2005 a study was presented at a meeting of the International AIDS Society. This study included 50 HIV-infected men and women taking HIV medications. About half had been diagnosed with full-blown AIDS.
At the start of the study, all of the participants complained that the drugs caused at least two digestive side effects: nearly 80% had gas, more than 40% had bloating, 50% had cramps, nearly 50% had appetite loss, and 10% had actually lost weight
The participants then received six weeks of acupuncture. For three weeks the acupuncture included four sites commonly associated with improvement of digestive symptoms, such as nausea, vomiting, and bowel upset. For another three weeks they received acupuncture at four sites nearby sites not noted for affecting digestive conditions.
The patients were unaware of which type of acupuncture they were receiving at any given time.
But after just three weeks of acupuncture treatments, only 60% had two or more digestive symptoms. Both sets of acupuncture points improved digestive symptoms. However, acupuncture at the sites targeting digestive symptoms was more effective in controlling loss of appetite, abdominal cramps, and bloating.
In addition, among the 20% of people who said they weren't taking their AIDS medications as directed at the start of the study, half reported improvement after acupuncture treatment. This points out, states researcher Elizabeth Sommers, research director of the AIDS Care Project/Pathways to Wellness in Boston, since they feel better after acupuncture, people are more likely to take their drugs properly, resulting in better disease control.
In this study, none of the participants complained of side effects from the acupuncture.
Pain, a frequent symptom in people with HIV disease, appears to be particularly responsive to the effects of acupuncture. While the exact mechanisms by which acupuncture relieves pain remain obscure, there is clinical evidence to show that it does work. Specifically, acupuncture has become a popular treatment for people with peripheral neuropathy, which is a common complaint of people with HIV. Neuropathy, or nerve damage, manifests as pain, tingling, or numbness in the extremities, usually the feet. After acupuncture treatments patients report less tingling and more flexibility in the joints.
Among the many attractive features of acupuncture therapy are its safety and its relatively affordable cost. Convenience is also a consideration: it is not necessary to plan one's life around acupuncture treatments, which is an additional benefit to individuals who must plan their lives around their HIV and AIDS drug therapy schedules.
Among the many attractive features of acupuncture therapy are its safety and its relatively affordable cost. Convenience is also a consideration: it is not necessary to plan one's life around acupuncture treatments, which is an additional benefit to individuals who must plan their lives around their HIV and AIDS drug therapy schedules.
http://www.pacificcollege.edu/news/blog/2014/04/26/acupuncture-ease-side-effects-aids-drugs
Friday, 17 February 2017
Pain For HIV ers A Growing Problem
Today's article from pain.com (see link below) is the first of a week-long examination of living with pain for people living with HIV in general and pays special attention to neuropathy as being one of the main causes of pain. It is useful for people who are experiencing pain, in that it may help identify the cause more easily. The symptoms of neuropathic pain can't really be mistaken for anything else but that's not to say that people with HIV don't also suffer from pain from other sources.
Treating Pain in the HIV/AIDS Patient
December 8, 2011
Friday, 16 December 2016
A Third Of HIV Patients Have Neuropathy
Today's post from hcplive.com (see link below) will not come as news to most people living with HIV. It has long been stated that between a quarter and a third of people with HIV also eventually develop neuropathic problems. However, this article doesn't really go into the question as to why this happens. The accepted view is that it's a consequence of antiretroviral medications (especially the older ones) but the number of people who suffer from neuropathy whilst being on modern HART drugs is growing. Other people think that the virus itself must play a role in attacking the nervous system, or a combination of both HIV and the drugs used to treat it. Either way, it is a significant side effect of living with HIV and one which shouldn't be underestimated. Whatever the cause, it's the treatment you should be concentrating on. Finding the right medication for you to be able to live best with the symptoms, is the key and what your specialists should concentrate on.
Peripheral Neuropathy in a Third of HIV Patients
Signs of peripheral neuropathy (PN) were detected in a third of men after almost 4 months of HIV, according to research published in the Journal of Acquired Immune Deficiency Syndromes.
A multifaceted team of researchers studied 58 antiretroviral-naïve male patients with laboratory-confirmed HIV infections by examining blood and cerebrospinal fluid (CSF). Study participants were an average age of 36 years with a median CD4+ T-cell count of 575 cells per microliter, which was evaluated at 107 days post-HIV transmission (DPT).
Primary HIV infection (PHI) was used to measure baseline, and was defined as within the first 12 months after HIV transmission. The infection’s timeline was confirmed by observing antibody seroconversion, nucleic acid testing, or less sensitive enzyme immunoassay result. In other cases, DPT was defined by estimating the halfway point between the last negative and first positive HIV test.
Study participants were evaluated based on general medical, neurological, and psychological examinations, PN symptom testing, stricter symptomatic PN (SPN) testing, intravenous drug use, and laboratory assessments. The laboratory testing included blood and CSF testing, lumbar punctures, lymphocyte count measurements, and HIV RNA levels.
The researchers found 20 participants (35%) met criteria for PN after an average of 107 DPT. PN subjects tended to be older (median age 40 years) compared with no PN (NPN) patients (median age 34 years). SPN was found in 13 of those subjects (65%) and 6 patients (30%) had bilateral findings. Seven patients had unilateral findings, and in the remaining 7 subjects, the laterality was not specified.
There was no difference between median ages, days post HIV transmission, blood CD4 or CD8 counts, CSF or plasma HIV RNA levels, CSF white blood cell counts, CSF to blood albumin ratio, or neurological or psychological performances among PN subjects and NPN subjects. Typical symptoms of PN found in 13 PN subjects included “foot tingling and numbness.” No differences were distinguished between NPN and SPN subjects.
However, PN and SPN patients had elevated CSF neopterin, SF monocyte chemoattractant protein-1, and blood neopterin levels when compared to NPN subjects. PN subjects were found to have a higher percentage of activated phenotype CSF CD8+T lymphocytes than NPN study participants.
“PN is a frequent neurological disorder reported in HIV, classically in the setting of chronic untreated HIV infection or after exposure to certain antiretroviral medications,” the authors concluded. “However, we found that signs (35%), or signs and symptoms (22%), of PN were evident in a cohort of ART-naive subjects recruited to a neurological study at a median of 3.5 months after initial HIV transmission. We further examined mechanisms for peripheral nerve dysfunction identified during this stage, revealing that markers of systemic and central nervous system immune activation are elevated in subjects with signs of PN compared with those with NPN.”
http://www.hcplive.com/articles/Peripheral-Neuropathy-in-a-Third-of-HIV-Patients
Saturday, 10 December 2016
Triglycerides HIV and Neuropathy
Today's post from napwa.org.au (see link below)is an Australian article, with references to international studies of HIV-related neuropathy and explores the link between high Triglyceride counts (a form of fat in the bloodstream) and the inflammation (also of the nerves) caused by HIV. Click here for an earlier post on the blog about triglycerides and HIV.
A Real Pain
Positive Living article • Graham Stocks •
28 November 2011
PERIPHERAL NEUROPATHY IS A COMMON COMPLAINT OF MANY PEOPLE LIVING WITH HIV.
The symptoms vary but usually consist of unpleasant ‘stabbing’ pains or tingling, burning, numbness or cramps in the hands and feet. It can make walking or placing weight on your feet quite painful. And it can have a huge negative impact on your quality of life.
Those of us who have lived with HIV through the 1990s remember it as one of the more unpleasant side effects of the older nucleoside reverse transcriptase inhibitors (NRTIs) like d4T (stavudine) and ddI (didanosine), both of which are now rarely used in Australia.
But HIV itself can also cause peripheral neuropathy (PN). Even people on effective treatment with undetectable viral loads can still experience nerve tissue damage. The cause is not fully known but it may relate to macrophage cells in the nervous system and associated small blood vessels being infected with HIV. This might then stimulate the production of chemicals which causes inflammation that damages nerve fibres, particularly the longer ones in the feet and arms.
The other factors associated with PN are increasing age, height, high intakes of alcohol and the extent to which your immune system was damaged before starting treatment (sometimes measured by your lowest CD4 count or ‘nadir’).
STUDIES + LINKS
A recent study called ALLRT (AIDS Clinical Trials Group Longitudinal Linked Randomized Trials) followed more than 2000 PLHIV for seven years after they had started on treatment. It revealed that 30% of them had some HIV-associated peripheral nerve damage and up to 20% of them experienced some pain in their feet. Nerve function was measured by assessing the signs (vibration sensation at the feet and ankle reflexes) and symptoms (pain, ‘pins and needles’ sensation and numbness). All these people were being effectively treated and their median CD4 cell count was around 500.
Another study of 436 PLHIV in California (between 2000 and 2008) found some interesting associations between PN and levels of triglycerides (one of the lipids or ‘fats’ we regularly monitor in blood tests). In this study, almost everyone had an undetectable viral load and their current median CD4 cell count was around 460.
Amongst them, nearly 30% had some signs of PN. They may not have experienced pain or other symptoms, but they were judged to have nerve damage by signs such as reduced vibration or sharp sensation and reduced ankle reflexes. Like the larger ALLRT study, the same factors (age, height, nadir CD4) were also associated with PN. And there was some suggestion that those who took a protease inhibitor showed higher rates.
The important finding in this study was that people with higher triglycerides were also more likely to have PN.
People who had levels in the range of 1.6 to 2.75mmol/L were one and a half times more likely of having PN and the probability was 2.6 times higher for those with triglyceride levels greater than 2.75 (compared to people with levels below 1.6).
The National Heart Foundation of Australia advises that triglyceride levels greater than 2.0 bring increased risk of heart and other diseases. A lot of PLHIV have trig levels higher than this, and it is often combined with lower levels of HDL or ‘good’ cholesterol.
It is thought that high levels of triglycerides alter the way mitochondria function and increase the release of chemicals which can damage nerve fibres.
Triglycerides also affect blood flow in very small blood vessels which may also result in nerve damage.
In diabetics there is accumulating evidence that oxidative stress (through production of free radicals) is part of diabetic neuropathy.
Diabetics often have elevated triglycerides which contribute to their peripheral neuropathy. It is thought that damage to the blood vessels supplying oxygen to nerve tissues starves them of sufficient oxygen and thus damages them. Antioxidant treatment with Alpha Lipoic Acid has been shown to prevent these abnormalities.
So, both HIV itself and high levels of triglycerides are factors linked to inflammation in the peripheral nerves and associated blood vessels.
Clearly, reducing the inflammation associated with HIV is the first step to minimising the risk of acquiring peripheral neuropathy. Treating HIV itself will reduce this inflammation, and so, consistent with Australian Antiretroviral Guidelines, starting HAART should be considered in all PLHIV when their CD4 counts fall to less than 500, and definitely started by the time CD4 count reaches 350. Using dietary supplements of 3 to 5 grams per day of omega-3 fatty acids (fish oils) have been shown to be highly effective in reducing triglyceride levels. As have drug-based therapies using niacin and/or fibrates.
http://napwa.org.au/pl/2011/12/a-real-pain
Sunday, 9 October 2016
Living with HIV and Neuropathy
Today's post is a moving five minute video from a man describing his experience of being tested and subsequently living with HIV and Neuropathy. It will be uncomfortably recognisable to many and is also a reminder that not everybody can just take the meds and live a 'normal' life. (See Transcript and link below)
Transcript
Michael Silvas: I am Michael Silvas and this year I turned 50. I became positive in 1993 while I was diagnosed positive with AIDS. I should have known and should have been tested prior to that denial so weird. The very first person who gave me, who -- I should've known I had AIDS was my dentist. And it was another person I worked with, referred patients with and all that, and he was very good. He had said to me, he said, "Michael, when was the last time, you know, you had an HIV Test?" that should've told me, I'd better get down there and get an HIV test.The first symptoms that I was feeling with unaware for AIDS and maybe someone else can relate to is the reason why I am going through this detail. I would come home -- I was teaching Inclusive Marketing at the time with IBM, and my feet --I remember on Fridays I would come home and my feet would just be killing me and I thought it was the wing-tip shoes because with IBM we wore -- back in my day, we wore dark suits and wing-tipped shoes and etc. And I thought it was me being on my feet all the time, I thought it was the style of the shoes. I never-never would have thought that it was actually a disease or a medical condition.And I didn't even; in fact I had already been diagnosed with AIDS for several years, before I knew that it was actually the medical condition that that there was a thing called Neuropathy. When I was tested, I went down with a friend of mine who I knew was going to get it, you know who had it, I just knew he had it and he has been talking about getting tested but he wouldn't go because he was scared. And so I said -- well, you know, he asked me to go with him and I said, "Sure, I'll go with you" because I wasn't worried that I was going to come out, you know, positive.And now it shocked me! I don't advice anyone to do that, you know. If you really don't want to share your information with a friend, don't go with a friend. It is a big -- it does change your life in a dramatic way and you might not -- you might have a different perspective once you get the diagnosis as to who you want to share it with. I remember getting back in the car and just expecting that they were going to be positive, and then you know I saw that he didn't have a packet and I did and then I had to explain it to him. It just -- I don't know! It was like kind of takes your breath away. When I get asked, you know, how were you infected? It has to be sex!And I felt like I was at the top of my game when I became very sick one week and all of a sudden my stomach started swelling up and getting bigger and bigger. And I started losing controls of my bowels, the lack of better words shitting all over myself and vomiting and vomiting. I went in the emergency room and I remember we called my therapist because I had already started going -- I had already been diagnosed with AIDS but I hadn't been sick and so I started therapy, Psych-therapy. And so I called her as when I was going in the emergency room, she was in there with me. And I remember so clearly that I was there dying on the bed in the emergency room and no one would get near me, no one would -- everyone was scared to touch me.My Doctor at the time, who was an Immunologist was on vacation and his backup never showed, never came. The nurses didn't want to touch me, no one, no doctor wanted to attend me, even with my therapist there advocating for me. What they ended up doing was giving me a shot of a Demerol and sending me home without any examination, without anything -- seeing my stomach just ended, you know, big. Kind of like you see the African babies with the swollen babies when they're starving, it was like that. And so pretty much I went home to die. But at least I wasn't in as much pain for at the moment.I was living -- and it is so funny because I was living in a complex who accepted rental assistance, I had broken out with Shingles really bad. And I understand that normally shingles you get only on one side, but I had it on both sides and it looked like I had been whipped. You know all across my back and all of my legs; it just looked like they've been whipped with sores. I mean it was awful. And I had decided that I was going to not be ashamed, it was part of me trying to cope with my diagnosis and I wore shorts and that was a mistake.I came through -- as I was coming through the complex and walking by the pool, people noticed that there was something, you know, wrong with my legs. And they became aware and they started talking and then they started snubbing me and then they started harassing me and they would do things to me to -- to force me to move.Female Speaker: Wow!Michael Silvas: I take two in the morning, two in the morning and two at night!Female Speaker: And that's also for HIV?Michael Silvas: Yeah! I have to take these together. Along with -- when I take both, I have to take Tenofovir which is a booster. This is a really -- considered a really wonderful break through. For the first time with this medication I had the first undetectable test however it didn't last long.Female Speaker: Okay!Michael Silvas: And now these really aren't really functioning -- I think that if you're considering going into any type of relationship, in fact I do know of people who were in going into a relationship before having sex, especially unprotected sex, they test. And that's almost a way of life now and it should be everyone's way of life. You don't hear enough about that.
http://www.freehealthvideos.net/8837/living-with-hiv-michael-silvas.html
Wednesday, 21 September 2016
Is HIV always the big bad wolf
This is part of an article by Bradford McIntyre on the site http://www.hivaidspositivestories.com and raises an important question for all people with HIV. Is the blame for every disease or complaint that you get, transferred onto HIV and if so, is that really the case? It's certainly easy for health professionals to blame HIV and/or the HIV medication for your neuropathy but the fact is that there are about 100 possible causes for neuropathy (see elsewhere here on the blog). It makes you think!
So much fear has been created around HIV infection and AIDS. The camouflage uniforms worn in the army, disguise and hide, so not to draw attention, able to blend in. The fear associated with HIV/AIDS has kept us in the dark, many fear losing their family. friends, home and job, causing people to hide the fact they have been infected with the HIV virus. So no one can see, hear, or know the truths of those living with HIV and AIDS. Most often when individuals die from HIV related illness or AIDS, the funeral announcements rarely say HIV/AIDS was the cause, but use cancer, heart disease or any other camouflage.
How can we tell the real number of HIV related deaths? How can the public know and understand HIV/AIDS, without the truth? Individuals dealing with HIV and all those around them who are affected but not infected, they know these truths!
Science, pharmaceutical companies, the medical profession and government, have all but ignored much of what many people living with HIV/AIDS have to say, which is a major contribution in the understanding of this virus. Science and the medical profession provide HIV/AIDS information to the media. The media takes this information and in so doing, does it without a real balance of understanding. Unfortunately the fear has undermined our understanding. We see people dying, and certainly in many parts of the world there is malnutrition, lack of medical attention and affordable pharmaceutical resources, causing countless deaths. We see the fear associated with sex and the need for safe sex practices! We hear about the deaths.
We hear about drug cocktails, medications being approved. We see people taking a handful of pills. We hear about the resistance to drugs, and we visually, through the media, see those sick with wasting syndrome, PCP pneumonia, kaposi's sarcoma , or crippled by neuropathy.
What is alarming about this situation is the medical profession holds the HIV virus responsible for any and all illness when a patient is diagnosed infected with HIV, using the excuse that a condition is HIV related. It is because of this rampant over diagnosis that little or no search is undertaken for what is causing the health problem. Many have died, many suffered greatly due to mis-diagnosis or no diagnosis. Other diseases occur, and with a condition in progress or out of control and very little attention given it, this allows for many suffering and dying. Not from HIV, but from an invasion of bacteria, fungi, viruses and cancers, unaware to those not looking.
We don't see individuals living a happy and full life, whether it be with or without drug treatments. And we don't see it because the fear has people afraid to talk about HIV/AIDS or disclose they have been infected. So we don't have people coming forward to tell their side of HIV/AIDS. How are we going to get people to come forward when the stigma attached to HIV/AIDS has created so much fear. People are hiding their HIV infection! This is likened to the early days of cancer, hiding the fact, only whispering the C word! Everyone who develops cancer does not die, it makes no sense to believe everyone who is infected with HIV will get sick or die either! We don't see those who get sick but benefit from the drugs and have their health restored, many returning to the work force. We don't see or hear about individuals who test positive for HIV or have AIDS, in relationships, falling in love. We don't see the many relationships where one partner is infected and one is not, and the partner who is negative, is not infected.
The public needs to understand HIV and let go of the fear, each person taking part in a global prevention strategy. These days pharmaceutical resistance is evident, with HIV, not only is a person infected with a strain or possible multiple strains, but along with it, comes the possibility of resistance to all the drugs the infected individual has taken.
We don't know how each person will react to HIV infection. We need to put money back into wellness!
We must not wane from our efforts in safe sex education, prevention, and research. Never was it more important to keep up our efforts, creating less toxic and affordable drugs, and providing proper health care including alternative therapies and supplements.
With proper awareness and education, we can go about living our lives responsibly, " showing up for life", without fear. Not afraid of talking about HIV/AIDS or conversations about safe sex.
Letting go of the fear, we can all talk to our family and friends and co-workers we discuss our personal lives with. Our employer can know health related information. And, if need be, we can ask for help and receive help! We can also eliminate false perceptions and judgments due to shear ignorance. There is more power in people knowing the truth, than there ever was in the fear and hiding! A shift in perception is nothing short of a Miracle!
by Bradford McIntyre
http://www.positivelypositive.ca
Saturday, 17 September 2016
Recognising HIV Related Neuropathy
Today's short post from livestrong,com (see link below) is a somewhat simplistic view of how neuropathy can be related to HIV but nevertheless gives you a good idea of how, why and what. There are relatively few easily readable articles available on why the HIV virus can cause neuropathy, possibly because it's one of the newer areas of study amongst neurologists and HIV specialists. For many years the only link between the two was the knowledge that certain older antiretroviral drugs could bring on nerve damage but now it is accepted that the virus itself can play a major role. The fact that there are over 100 other possible causes, has always clouded the picture.
Early Symptoms of HIV-Related Neuropathy Sep 14, 2010 | By Jacques Courseault, M.D
HIV-related neuropathy is a chronic inflammatory polyneuropathy, which describes damage to nerves in the central nervous system or to nerves outside of the central nervous system. The term "polyneuropathy" means that several nerves are involved over the entire body, according to MedlinePlus. This form of neuropathy occurs because the body's immune system overreacts and damages the body's nerves. A patient with HIV neuropathy should be aware of certain early symptoms of this condition.
Numbness and Tingling
According MayoClinic.com, HIV neuropathy can cause numbness and tingling. This occurs because the immune system attacks the nerves, damaging them. The early symptoms that a patient usually experiences are numbness and tingling that may be felt in the fingers and toes, later progressing into the arms and legs. A patient with a known history of HIV who is experiencing a new onset numbness and tingling should immediately schedule an appointment with his physician for treatment.
Weakness
MedlinePlus states that an early symptom of HIV neuropathy is weakness which usually occurs in the arms and hands, or legs and feet. As HIV progresses, the immune system may cause further damage early in the course of the disease. Increasing nerve damage can cause weakness in the extremities, which may make it difficult to perform activities of daily living. In this case, the patient should not hesitate to seek immediate medical treatment so that the proper therapy can be started to prevent further worsening of weakness associated with HIV neuropathy.
Pain
Pain is a common early symptom associated with HIV neuropathy, states MedlinePlus. Pain occurs because the body's response to HIV can result in secondary nerve damage which causes pain in the fingers, toes, arms or legs. Pain may be described as burning, achy or tingling. In this case, medications may be prescribed to help a patient cope with the pain. Controlling the underlying progression of HIV will slow the onset of further complications from HIV neuropathy.
References
MedlinePlus: Chronic Inflammatory Polyneuropathy
Mayo Clinic: Peripheral Neuropathy
http://www.livestrong.com/article/244301-early-symptoms-of-hiv-related-neuropathy/
Tuesday, 13 September 2016
New Years Resolutions for Neuropathy and HIV
Okay, it's almost 2012 and what would a New Year be without a few resolutions to aspire to? Whether New Year's resolutions are a part of your life and whether you follow them fanatically, or fail after the first day, doesn't really matter. It's the thinking about ways to improve your situation that counts. As someone with both HIV and neuropathy to think about, you'll not need reminding that life can always be better but because you're confronted with these problems day in and day out, you may never see a moment to stop and think about whether you're really doing your best to keep your head above water.
Today's post comes from the Positive Side (see link below) and was written by Lark Lands, who has been featured on the blog before. Interestingly, it was written for people with HIV, in 2001 but is not out of date because there is nothing here that doesn't apply to neuropathy sufferers today. You may also find it a little prescriptive and automatically reject the idea of someone, 'telling you what to do' but even if you just stop and think about one way you can improve your health situation, you've taken a step in the right direction. Apart from that, everything suggested is good advice - we all know it! We all also know that the pain and/or discomfort of neuropathy can perversely make you lazy because the idea of making an extra effort, just seems too much. Therefore today's post is just a gentle reminder, nothing more.
10 Commandments for Living Long and Well with HIV
by Lark Lands
Commandment #1: Manage your disease. Do the work.
Avoid the Humpty Dumpty Syndrome. We can’t keep waiting for people to fall apart so we can try to patch them back together. There are two parts to this commandment:
Don’t wait to start managing this disease. Begin now.
Understand what it really means to manage a disease. It’s hard work that never ends, but it’s worth it when the payoff is a disease so well managed that you are living well with it, not just longer.
Commandment #2: Eat what’s good for you.
If you don’t have the nutrients, you can’t build the CD4 cells, T cells or any other immune cells. You’ve got to have:
- good levels of protein
- good levels of unrefined complex carbohydrates (brown rice instead of white; whole-grain breads, crackers, cookies and pasta instead of those made with nutrient-poor white flour)
- lots of fresh fruits and vegetables
moderate amounts of only the good kinds of fats (mono-unsaturated fats like olive oil and natural fats like butter; avoid the partially hydrogenated oils widely found in margarines, shortenings and many baked goods and snack foods. Read the labels!)
- Wash all that down with lots of healthful liquids (water, juices, teas and the like, not chemical and sugar-loaded junk drinks). That’s the way you give your body the building blocks it needs to keep up the immense battle against HIV. Always make sure the food you eat and the water you drink is safe.
Commandment #3: Do everything necessary to help your body digest, absorb and use food properly.
Even if you’re eating the right things, it won’t do you any good if you don’t have good digestion and the ability to use the nutrients. Many people need to improve how their bodies handle food by supplementing with pancreatic enzymes, vegetable enzymes, hydrochloric acid, acidophilus, L-carnitine and L-glutamine.
Commandment #4: Supplement your good diet with nutrients that will help you have slower disease progression and a lot fewer symptoms along the way; always include optimal levels of antioxidants.
Research has shown that supplying the right level of nutrients in the body is associated with reduced disease progression and improvement in long-term survival. In addition, nutrients and enzymes can reduce, eliminate or contribute to eliminating many drug side effects and other symptoms such as fatigue, skin problems, diarrhea, neuropathy, digestive problems, memory or other mental problems, wasting and others.
Commandment #5: Protect your body in every way possible from the damage that infections cause and give your body what it needs to repair itself when damage does occur.
First, use the best available treatments; then supply the particular nutrients that the body can use to repair itself. In particular, repair the intestines with zinc, vitamin A, vitamin B6, vitamin E, bioflavonoids, vitamin C and, especially, L-glutamine. If necessary, use doses of up to 30 to 40 grams of L-glutamine per day until repair is effected, followed by lower doses (5 to 10 grams daily) for maintenance. You can’t absorb nutrients or drugs if you don’t keep your intestines healthy, for which glutamine is crucial.
Commandment #6: Do prophylaxis, where appropriate, and add to your pharmaceutical prophylactic regimen the nutrients and natural therapeutics that help protect you from infections and that help you fight them when you get them.
Important nutrients for protection from infections: L-glutamine (intestinal, lung, oral and cervicovaginal infections), acidophilus (Candida overgrowth and other intestinal infections), oregano extract (Candida overgrowth), folic acid (anal or cervical cancer), and a good level of nutrients in general. Remember: Your body’s response to any infectious agent or abnormal cell is absolutely dependent on the nutrients needed for a good immune response.
Commandment #7: When appropriate, take the best available antiretrovirals in the best possible combinations and, while you do it, protect your body from their side effects.
When you reach the point at which HAART (highly active antiretroviral therapy) is appropriate, it is terribly important to remember that you must have good nutritional status for the body to use drugs effectively. By maintaining the optimal nutrient levels that promote strong immune function, your body will be better able to work with the drugs to suppress the virus and slow disease progression. When the virus is suppressed, optimal nutrients will also help in the restoration of lost immune function since nutrients are the building blocks for immune cells. Always remember that virtually every known nutrient is related to some aspect of immune function.
Last, but definitely not least, nutrients may help protect you from drug side effects:
- for liver-toxic drugs (indicated by increases in your liver function tests): alpha-lipoic acid, NAC, vitamin C, L-glutamine, L-carnitine, silymarin (milk thistle extract)
- for the toxicity to mitochondria (your cells’ energy factories) caused by nucleoside analogues (which may, in turn, cause or contribute to neuropathy, muscle aches, some aspects of lipodystrophy, and lactic acidosis): carnitine, coenzyme Q10, the B vitamin riboflavin, a plentiful supply of all the important antioxidants (alpha-lipoic acid, N-acetyl-cysteine, vitamin E, vitamin C, carotenoids and selenium)
- for drugs that cause neuropathy: alpha-lipoic acid, L-acetyl-carnitine, gamma-linolenic acid (GLA), magnesium, B vitamins (including B6, B12, thiamine, biotin, choline, inositol)
- for bone-marrow suppression: B12, vitamin E
- for kidney-stressing drugs (such as indinavir/Crixivan): Drink lots of fluids!
In addition, to help your body process drugs, supply the nutrients that your body will require when breaking them down. For AZT, that means B1, B3, B6, B12 and magnesium. For ddI, you need molybdenum (a microtrace mineral), riboflavin and iron.
Commandment #8: Handle the hormone problems of this disease.
For both men and women, maintaining testosterone and using, where appropriate, recombinant human growth hormone (Serostim) may help prevent the loss of the body cell mass (muscle and organ tissue) that keeps you alive, while helping you look, function and feel better. Women may also need female hormone replacement to prevent worsening of PMS, perimenopausal or menopausal symptoms.
Commandment #9: Exercise.
Just do it. You need to build up the muscles with progressive resistance exercise like weight training. That’s what gives you a body with plenty of the lean tissue that you need for survival.
Commandment #10: Program the mind toward healing.
The power of the mind to boost the body toward healing is amazing. And the power of hope is one of the best tools you can have for long-term survival. Bob Publicover, incredibly long-term (two decades and counting) survivor, says it best: “Never give up, never give up, never give up.”
http://www.positiveside.ca/e/V5I4/Commandments_e.htm
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