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HIV/AIDS Blog Central

Guinea Pigs, Crash Test Dummies and HIV/Neuropathy Treatment

By Dave R.

June 14, 2012

Internet links shown in these posts are designed to provide more detailed information if required.

It's hard to estimate the impact of the latest news to hit the neuropathy forums (what! we can't have trending stories too?) but anyone who has recently Googled the words HIV and Neuropathy has been confronted by dozens of links referring to the news that Lyrica (or pregabalin) is pretty much useless for treating neuropathic pain. It's not often that the internet neuropathy community (normally a mild-mannered, stoical, too-busy-dealing-with-symptoms folk) spreads a story so quickly across their websites, blogs, forums and chat rooms and when it happens, it's for a good reason!

More Information: Lyrica (Pregabalin) Fails For HIV-Related Neuropathy

Tracking the progress of neuropathy treatments is normally like peering through thick fog. You read about the latest potential wonder treatment; get excited and then it disappears into the mud of research and testing. At that point you know that it may be years before it hits the chemists' shelves and a sort of jaded acceptance sets in. So we stick by the tried and tested but rarely 100% effective, 'second-hand' medication, normally used to treat other diseases and try to live with the side effects and minimal relief they bring. It's nothing the seasoned person living with HIV isn't totally used to. It's also nothing less than disturbing, that a drug which has long been regarded as a mainstay of neuropathy treatment is suddenly declared to be ineffective.

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Never mind the financial waste; people have clearly been swallowing potentially dangerous drugs, sometimes over a very long period and for nothing!

The manufacturers of Lyrica (pregabalin) are Pfizer and they released this information themselves, claiming that it applies to HIV- and diabetes-related neuropathy which is somewhat strange when you consider that HIV and diabetes are potential causes of neuropathy, not separate strains of the same disease. Does this mean that Lyrica (or pregabalin) works for any of the other ninety-odd sorts of neuropathy? I'm not a molecular chemist but I seriously doubt that. Neuropathy is basically nerve damage and it creates symptoms that are pretty much universal throughout its various forms. Lyrica (pregabalin) is intended to treat those symptoms and can't treat the cause or the damage itself, so to label it with just two disease associations just doesn't make sense. I'm willing to be proved wrong.

Lyrica was, is and may still be in the future, widely prescribed for neuropathy as a means of reducing the symptoms of pain, tingling, numbness and so on. It is meant to influence neurological transmissions and signals across a variety of systems in the body, thus theoretically, blocking pain signals. It is also widely used to treat epilepsy. The fact that even the manufacturer itself has acknowledged that its effectiveness is minimal for neuropathic pain; has only confirmed what many people have long suspected and the mounting anger is completely understandable. People may give Pfizer credit for actually owning up and releasing their own research findings but the company have been under fire both from patients and in the courts for years, mainly because Lyrica (pregabalin) can be a drug with potentially very unpleasant side effects.

It was always a sort of accidental wet finger in the wind drug choice for neuropathy anyway but it was by no means the only one. You perhaps can't blame Pfizer for taking the science at face value and using its own drug to make money. I'll give them the benefit of the doubt: their original motives must have been to improve the lot of the neuropathy patient. However, somewhere along the line, a board room decision must have been made to continue promoting it for this purpose, when there were serious doubts as to its efficacy. At least the latter ineffectiveness has now finally been admitted.

The problem is: Lyrica (pregabalin) is not the only drug with dubious credentials for treating HIV-related pain problems.

After your doctor has decided to issue medication to help control your neuropathy, you follow -- almost universally across the world -- a progressive series of drug treatments. The hope is that one will help your symptoms enough to stick with it but the idea is that you can move onto others if the problem gets worse. Sounds great doesn't it? Lots of options! The problem is that each recommended drug already has a life treating something else and has been applied to neuropathy almost as an afterthought. This information is available in full elsewhere on this blog.

More Information: How Neuropathy Is Currently Treated

So if normal, over-the-counter analgesics don't work (and they generally don't) you move onto anti-depressants and more specifically Tricyclic antidepressants, such as Amitriptyline, or Nortriptyline. They have many different brand names to confuse you even more. They are of course intended to treat depression and for neuropathy the doses are generally lower, although because of the symptoms, doctors have been known to assume that depression comes in the same package as neuropathy and they issue 'normal' doses. However, only about a third of patients respond positively to them and pain or discomfort relief can be minimal. The side effects however, range from psychiatric to allergic and can be intolerable for some people.

More Information: Tricylic Antidepressants for Neuropathy

If you get too little relief from Tricyclic antidepressants, you generally move onto anti-convulsants, which are normally used to treat epileptic conditions. These include Gabapentin (Neurontin), Lyrica (Pregabalin), and Carbamazepine. People generally begin with Gabapentin and move on if they don't respond. However, some of these not only clash with certain HIV medications but the side effects can also be quite alarming; ranging from sleepiness, blurred vision and dizziness to clinical depression. Your kidneys should also be regularly checked because these drugs are renally excreted.

More Information: Drug Treatment of Neuropathic Pain

If the symptoms of neuropathy become almost unbearable, the last port of call is generally the opioid family, including Tramadol, Oxycodone, Fentanyl, Methadone and certain other morphine variants. Patients are generally started on low doses but the body quite quickly becomes dependant and addiction can be a real problem if the dosages are not carefully monitored. The problem with opioids is that quite often, the more you take; the more you need. They will help control the pain but it still won't be 100% removed and the effects on the mind can be disturbing to say the least. I personally, have yet to meet a treatment for neuropathic pain that doesn't mess with my head but that's by no means a universal reaction.

More Information: Opioids -- How Much Do They Help With Chronic Neuropathic Pain?

Opioids can cause relatively mild side effects, such as drowsiness, light-headedness, nausea, and constipation. However, if not taken with care, overdoses can slow down breathing and cause death. Thanks to their addictive qualities, they may also be a problem for people with a history of substance use. There is some evidence however that new developments in opioid use and refinement may well be much better suited to neuropathy sufferers but again, it's a question of waiting.

More Information: Will a Better Attitude Towards Opioids Help Neuropathy Sufferers?

All of these drugs have worked to some extent for some people and as there are no alternatives at the moment, we have to work with what's available. The problems are that they all have side effects and they were all originally intended to treat something else.

I've skimmed over the neuropathy options here but much more information can be found by following the links. The point is that people living with HIV are bombarded by drugs as it is. When you add the drugs necessary to control nerve pain problems to the list, it is not surprising that many people become depressed and frustrated; they often suffer as much from the medication side effects as from the disease itself.

Furthermore, most people take what's issued to them completely on trust. They assume that their doctors will tell them all the possible side effects and the effects of long-term use. It is also assumed that any clashes with other medication will be spotted and dealt with before they're issued. The problem is, doctors are also human and it's perhaps unrealistic to think that they carry all possible drug interactions and potential side effects in their heads. You are given a leaflet inside the box, with all the drug company's own information and that's always the 'fall-back' if anything goes wrong ... you should have read it sir!

For people with HIV however, that's just not acceptable or even enough any more and I believe we have the right to demand good first-hand advice from our doctors and specialists and also objective advice on and in our pill boxes; not just what the drug company wants us to know and will cover their asses in a law court. That's why, it is so frustrating when a drug company like Pfizer is forced to come clean and admit that one of its money-makers is no better than a placebo for treating neuropathy and worse, never was!

When issued with a prescription for neuropathy (and HIV) the only sensible advice here is to discuss it to your doctors, even when they're trying to usher you out of the room to make way for the next patient. After that, go home and do your own research on the internet and if anything concerns you, talk to your doctors again. Get a second opinion if you're really worried. The home doctor may well have a different approach and level of knowledge than the HIV specialist, or the neurologist. Then when you feel that you're armed with enough information and have begun the treatment, listen to your body. The lists of potential drug side effects on the leaflets are enough to turn you into an instant hypochondriac, so that doesn't mean rushing off to the doctor at the first sign of a headache or nausea, or whatever you may have seen on the list of potential side effects but it does mean sensibly evaluating if something is really wrong and after a week or so, just doesn't feel right. A phone call, or visit to your doctor is not much trouble for him or her but it can save you a lot of anxiety.

What this latest revelation from Pfizer has taught us is that we can't necessarily take advice at face value. We may need to be more responsible for arming ourselves with the right information and making sensible decisions in collaboration with our doctors, instead of it being just a one-way process. People living with HIV and its family of secondary diseases have been guinea pigs and crash test dummies for too long. We've earned the right to receive the best medication and information about that treatment possible; after all we've also earned the drug companies bucket loads of cash along the way!

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

Send Dave an email.

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See Also
Neurological Complications of AIDS Fact Sheet
Neuropathy Treatment & HIV/AIDS

Reader Comments:

Comment by: Greg H. (Seattle, Wash.) Mon., Mar. 11, 2013 at 1:29 am EDT
A very interesting, passionate read, Dave. And to respond with a tired but in my case appropriate remark. "I feel your pain (& raise it by 1).

I caught your comments when doing a "Lyrica AIDS-related neuropathy" search after lying here in pain as my Fentanyl patch's length-of-stay is about up.
The marijuana-derived Buzz lotion helps for awhile (thanks, fellow state voters for allowing this on the books). But it's NOT significantly reducing my AIDS-related neuropathy pain for more than 30 min.).

I turned off the tube so I don't have to hear/see Pfizer's frequent Lyrica ads suggesting relief from "diabetic nerve pain."

Now you've help me learn it doesn't help too many of those neuropathy patients.
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Comment by: David (UP Michigan) Sun., Jun. 24, 2012 at 1:06 pm EDT
I suffered tremendously w neuropathy caused by zerit and ziagan, to the point of using crutches as there was so little nerve feedback in my lower body legs and feet,just to keep from falling over. The pain was frequently unbelievable in its intensity. The nerve damage, vomiting and diareah was so bad after several years I stopped the hiv meds all together wishing death to take me quickly instead of continued treatment. During the 1 yr drug holiday the nerve damage seemed to stop getting worse and actually got a bit better, w some restoration of feeling in my legs and arms and hands. My feet continued to be totally numb by this time( 2x I burnt the bottoms of my feet very badly on hot pavement and sand). Eventually I went back on hiv meds and after about 8 yrs of treatment horrendous muscle cramping in my legs, feet, arms and hands started to get worse to the point of nightly tortuously painful muscle cramps which frequently left me shrieking for many hours a night. (Note I had been using muscle relaxers for many years at this point which help some).Still the cramping was worse by the day/ month/years. Finally after 12 years of HIV treatment and several med changes I was prescribed Lyrica by a neurologist to see if it could help. I kid you not when i say it is a miracle drug. I have been on it for 3 years. The first thing that happened is the diminishing of the severe muscle cramping, yeah i still got them but not as strong or as frequent or as longer in duration. I went from 1-2 hrs a night sleep to 3 to 4 hrs WOW!! After about 12-16 months I noticed more sensation in my lower legs and after 3 years Im actually feeling sensations even in the soles of my feet. Not restored, no but signif. improved (I dont fall over, hurt myself as often or lose balance as easily). Im not saying that lyrica will prevent your neuropathy ,as mine was pretty severe before I had started Lyrica I just know it cut down on the v painful cramping and improved sensory funtion in feet.
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Replies to this comment:
Comment by: DaveR (Amsterdam) Mon., Jun. 25, 2012 at 4:10 am EDT
Hi David,
Your story just goes to show how confusing neuropathy and its various treatments can be. What works for one, does nothing for the other and so on. The fact that lyrica has clearly helped you (and others) so much, sort of makes a nonsense of my article above. So what are we to think, when the drug company themselves come out and tell us that it doeasn't work! The problem is that many people also find thet Lyrica doesn't help their pain and brings nasty side effects along with it. I suspect that these numbers of people convinced Pfizer to issue a disclaimer as to its effectiveness - they were also ending up in court too often for their own liking. Yet for some people like yourself, it clearly works! Thanks so much for taking the time to share your story - it will certainly set people thinking that there's always two sides to every story and maybe reinforces the point that we have to try things out and listen to our bodies until we find something that helps. Cymbalta is another such drug that produces the same 'customer' reactions.


Comment by: rogers (upstate ny) Sat., Jun. 23, 2012 at 12:00 am EDT
i'll take lyrica and cymbalta over any opiods anyday.
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Comment by: Rhiannon (Louisville, KY) Fri., Jun. 15, 2012 at 11:59 pm EDT
Dave,

Thanks so much for covering the issues of PRN. I have has PRN for years and it just gets worse. I am falling from time to time, the pain is exhausting . I am at my limit on life and for me itís not quantity of life itís ď qualityĒ of life for me , however I cannot convince my doctor or anyone else that I am tired of all the medications. All I want is to be kept comfortable in life without taking anymore HIV medications. Although If I do not take my HIV medications I get punished and my pain medications etc gets held back until I start shoving those damned pills down my throat again.

I am honestly at a loss of figuring out how I can live the rest of my life the best way I can, without the help of my doctors I am just stuck. I so often wonder how many others are dealing with the same issues I am and I also wonder why that the majority of persons who are writers etc for all these magazines and websites , they always seem to keep the story so inspiring etc, which I think is great. However, what about US ! those who have lived so many years in pain and no life and no existing anymore. I hope this all makes sense, itís really hard for me to write about most of my issues. I guess I am filled with anger because I feel we are just being used as long term survivors for the doctors benefits to treat other patients. Okay . sorry for babbling so much..

I want to that you for bring PRN to life and for others to read and hopefully find the help they need. I have found after my research for PRN that basically if you have chronic PRN one is screwed.. or perhaps itís just me. I donít drink, I donít do drugs besides smoking MaryJ every night but the only thing it does is relaxes me to some point but the pain is still there..

Thanks again for all your hard work.

Sincerely,

Rhiannon
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Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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