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.
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.
HIV and Neuropathy: How to Avoid Becoming a Nervous Wreck
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 is 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 website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.
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.
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