Neuropathy caused by HIV

[kentfrat1783]

Well after a few years of being poked, prodded, labs and conversation with by my Infectious Disease Specialist and multiple Neurologists the consensus is my Neuropathy is caused by my HIV.   

Now it’s time to read up on some recent in addition to older articles on the connection, what to expect in years to come and what can possibly be done to slow the progression.

I still think that MS is in my future based on a few tests but that will be talked about later, I’m sure. 

Anyone have any recommendations on where I can start my reading?

Thanks,
Kent

[Jim Allen]

Hiya.

Here is a recent (2022) review of HIV neuropathy, including treatment. However, from what I know and my perspective, in the last decade+ everything has just been a repeat of the past, nothing really new.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9278792/

[Tonny2]

             ojo.              Hi there!!…Sadly there is nothing, in my case, about neuropathy. I started to have symptoms around 1996, two years after my dx, since then my doctor told me that hiv was the reason for it plus the meds, combivir. Now, after 29 years of living with my faithful partner hiv, i have drop foot and drop toes, very uncomfortable and painful, you even have oroblems falling asleep due to the drop foot, you have to sleep on your side…i remember our dear friend Miss Philicia, rip, he got that problem and got to the point to end his life not wanting to be a burden for his family….anyway, I don’t take any meds for neuropathy, I’ve learned that live with the paons, numbness and tingglung, tho, sometimes it makes me so anxious, the pain, that i have to take xanax…it is what it is, I’m still breathing, I’m still alive…good luck…hugs

[Tonny2]

                ojo.              Hello there! … I saw thee ID specialist yesterday, and I talked to him about my neuropathy pain, he told me that the nerves can burn down, meaning, that soon the pain will go away, because I won’t be able to feel my legs. I guess that sounds nice, not having to deal with pain anymore but, I’m not sure how safe it is to don’t feel stepping on a nail and getting an infection without knowing that one of my feet is infected. Question, would you rather feel the pain or, get rid of the pain and don’t feel legs and feet at all?… I think I’d rather feel the pain…. any feedback would be appreciated….hugs

[Jim Allen]

                ojo.              Hello there! … I saw thee ID specialist yesterday, and I talked to him about my neuropathy pain, he told me that the nerves can burn down, meaning, that soon the pain will go away, because I won’t be able to feel my legs. I guess that sounds nice, not having to deal with pain anymore but, I’m not sure how safe it is to don’t feel stepping on a nail and getting an infection without knowing that one of my feet is infected. Question, would you rather feel the pain or, get rid of the pain and don’t feel legs and feet at all?… I think I’d rather feel the pain…. any feedback would be appreciated….hugs

Putting on the big text front for you It's a really complex topic, and you won't get a clear answer on the forum or from an ID doc. If a doctor had said this to me, I would have gotten a second opinion from a neurologist.

From what I understand, outcomes really depend on several factors. For some people, things do improve with time, while others have permanent or may indeed gradually get worse.

[J.R.E.]

Hi there,

I can only give you my thoughts and opinions. when I developed neuropathy in 2003, I believe it was partially due to long term, untreated HIV infection. In 2003, I was already infected with HIV, and into my 18 year of living with it, and never on treatment.

The second contributing factor ( My opinion), I was place on Dapsone, for over a year. this was when my tcells were at 16.

The neuropathy I had affected both feet and hands, and was half up the arms.

Today there is no problem in the hands or arms. And I only have the slightest discomfort in the feet.  The problem I have in my feet, are pins and needles, and mainly numbness. but it doesn't affect me in my everyday activities of walking or exercise.

Every once in a while, the numbness and pins and needles feeling in mt feet,may increase, but not to any level where it is debilitating to me.


Take care---Ray

 

[Tonny2]

          Ojo.             Thanks Jim for replying. The damage to my lax nerves a permanent. I don’t take anything for pain but sometimes it is difficult to handle the stabbing pain. Fortunately, he doesn’t happen that often.

@J.R.E. thanks for replying and I’m glad that your neuropathy is that bad. I was diagnosed with 20 T cells and I think that my neuropathy is caused by hiv and some early medications that I took like zerit, hivid and videx and combivir…

Thanks again for replying…hugs

[J.R.E.]

         

@J.R.E. thanks for replying and I’m glad that your neuropathy is that bad. I was diagnosed with 20 T cells and I think that my neuropathy is caused by hiv and some early medications that I took like zerit, hivid and videx and combivir…

Yes,  I was also on Zerit for a while,which could have been a contributing factor. I was also on AZT, briefly.

There was a lot of different drugs being tested on me back then. I think I was on AZT, for about a month, until I had enough of that !


Take care---Ray

[Jim Allen]

          Ojo.             Thanks Jim for replying. The damage to my lax nerves a permanent. I don’t take anything for pain but sometimes it is difficult to handle the stabbing pain. Fortunately, he doesn’t happen that often.

If I recall correctly, you tried Gabapentin for a while. Have you spoken to a neurologist or a pain management service about other treatment options?

I'm on pregabalin so little bit different, not had too many issues myself, although it does tend to make my leg feel "numb", is the best way I know how to describe it, however, it is preferable for me personally to deal with that instead of waking up screaming in pain during the night. Still have pain and discomfort even with pregabalin but less severe now.

Well after a few years of being poked, prodded, labs and conversation with by my Infectious Disease Specialist and multiple Neurologists the consensus is my Neuropathy is caused by my HIV.   

@OP just checking in that you are getting what you wanted from the thread and how you are getting on?

[Tonny2]

       ojo.             Hi Jim, yes, I’ve tried neurotin, it did not help then I tried northryptiline, it helped me for a while in cobination with vicodin then I tried pregabalin and, I felt the same you have

Described your post, and I didn’t like not feeling my legs and as you said, still have some pain and everything neuropathy make us feel that’s why I decided to learn to leave with pain. I didn’t know that you were having same issues. I like me I am sorry you had to deal with this. When I’m in bed, I never cover my feet with blankets to try to keep my feet cold, as you may know, there are two different kind of pain, when your feet are cold or not warm. I prefer the pain when my feet are cold, he, my Case, when my feet are warm my pain is worse. I tried to use tennis shoes, then leather shoes. I’ve seem. neurologists and they haven’t helped. Well, it is what it is. Life goes on…hugs