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HIV Neuropathy

May 22, 2014 1:16 PM

Preface: I was diagnosed with HIV September 10, 2001. I started out on Trizivir 1-pill 2x a day. then switched to Kaletra, Reyataz, and Sustiva. I took Kaletra & Reyataz in the a.m. then in the p.m. I took the 3-drug cocktail. for, 10+ years this combination worked amazingly well plus I am adherent to medication directions. Minus the side effects the combination worked, but it has left me with HIV related neuropathy caused by 10 years of the cocktail. My Physician retired and is now President of the AMA. I went through several HIV specialist for a bit, until I found one that listens and actively engages me. She is Polish and absolutely amazing. I have trust in her, she doesn't negate my intelligence just because she is the doctor. She switched me to Complera and took me off the drugs causing side effects. Complera is another amazing combination drug to combat the virus. Sorry for being long winded but I thought it was beneficial.

Problem: HIV Neuropathy and pain management. For three years my Primary Care-PC and my Neurologist worked in conjunction to put me on Gabapentin & Cymbalta. It got to a point I was taking 800 mg of Gabapentin 4x a day with Cymbalta moving from 30mg to 60mg. I was eventually referred to a Pain Management Specialist who took me off the Gabapentin and replaced it with Lyrica 75 mg 2x a day. Lyrica with the Cymbalta worked great, for a while. Then he wanted me to try Amitryptiline, never again nor the same family of drugs. Let's just say it messed with me so bad that I went to my local pharmacist and told them what was going on and they refused to give me anymore and noted it in their system by my request. Now I am on 800mg if Ibuprofen PRN, Lyrica 175 mg, and he is helping me to come off the Cymbalta by my request because my Trusted HIV doc said it was a horrible drug to be on. So I'm slowly coming off the Cymbalta. I am at the point of taking 1-30 mg every other day.

I am in pain. From my knees to my toes it is cold, numb, tingling, prickly, and cramping more often than not. I have never felt my knees be numb! My pain specialist doesn't understand HIV related neuropathy and how much pain it causes your whole body when you take your HIV med. He tries to give me things for Diabetic neuropathy which is similar but very different in many characteristics. How can I get him to understand that I've tried everything but narcotics for over 3.5 years now, and that I am going to have to add narcotics to my medicine because what we are doing is not working? How do I even broach the subject with him about narcotics? I don't want to be labeled a drug seeker and I live in KY where it has gotten very strict on prescribing narcotics. I have resorted to marijuana to help settle my legs at night which it does a good job but not the best at times. It does make the pain easier to bear and helps me rest. I have missed to much work lately and my quality of life is not acceptable. I need help or advice on how to proceed. By the way I bought the full version of this app and I am so glad I found it. it is a great app and I'm looking forward to the future plans for the app, it would be awesome if you could use it in conjunction with web md. Thank you for taking the time to read my rant or problem.


May 24, 2014 1:12 PM

I have post Chemo neuropathy. Chemo saved my life, but made me hypersensitive to meds. I could not take any of the post Chemo drugs, like Tamoxifen etc. I tried Lyrica, Cymbalta, Gabapentin etc. They did help my pain, but made it impossible for me to focus or function mentally. I need to work and a confused mind does not fit. Luckily I can survive by just adapting in many ways. I can only give Thanks for this. Hang in there all of you!

May 26, 2014 2:37 AM

Hi Anthony and welcome to the community. Thanks for the good feedback and tip concerning the app. It will be interesting to hear from other peoples' experience on how to approach the topic of narcotics or medication change in general and discuss it with the medical care provider. And maybe someone has some useful tips for you on how to deal with HIV neuropathy or could learn some things from your experience. In the meantime, as barbz says: hang in there!

Jun 04, 2014 5:35 PM

Anthony, I just got a compound cream to use for my neuropathy pain. How I hope it works. I know that marijuana does help. I am in Florida and the medical version is now to be legal. it will mainly be for kids with seizures. Yes, it is also great for sleep. I also understand about being labeled. I was taking Ativan for sleep and was told I could only get it through certain specialists. Well, I am off it and trying to find help with sleep. Sleep is so vital.

I am trying to become more active as my pain took so much out of me when I was working. Luckily, I can now earn some money through writing from home. Recovering stamina is hard when your body fights you with each step, but I have to try.

Hope you are still trying to be positive. I know I am doing my best and some days it is harder than others.

Jun 05, 2014 4:32 PM

Barb, I too have tried all those non narcotic medications and found that they worked but made me feel very strange. Like my head was detached from my body and I was floating around. Couldn't do simple things without screwing some basic things up.
I'm still on Lyrica along with a concoction of narcotics, anti-inflammatories, muscle relaxers, etc. What I have done is asked the doctor to perscribe me a lower dose of the Lyrica along with the regular higher dose, so when I know that I have to be able to think clearer on that day, I will take the lower dose. But the result is that you will have to deal with increased pain during that time.
I can no longer work because of the pain but also because of the medications. I was a professional and now I am a couch potato and the pain has now started to rule my life.
There has been some other threads on CatchMyPain where Lidnocaine infusions has shown some success for some people and you may want to inquire about that with your health care professinal for your pain. Lidnocaine is used by dentists to numb areas for dental surgery and they find they can do infusions into the blood stream to give a more generalized pain relief. I am not a candidate for it due to High Blood Pressure and Cardiac problems, but if you don't have that kind of health issue then you may be a candidate.
Good Luck

Jun 07, 2014 1:08 AM

I have to thank each of you for your responses. He mentioned the rub on medication, and I still haven't recieved it. So I had to resort to other measures. I have leftover Baclofen for when my back would knot and tense up. I started taking those in addition to coming off the Cymbalta. It's helping for the moment but that won't last long either. Coming off the Cymbalta I didn't realize how much it controlled my pain. I am getting cramped legs and arms.

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