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Author Topic: Experience with peripheral neuropathy?  (Read 382 times)

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Offline Rosie117

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Experience with peripheral neuropathy?
« on: July 07, 2020, 03:09:11 pm »
Diagnosed Oct 2014, undetectable since a month later. Meds progression: Stribild, Genvoya, now Biktarvy. Overall Iíve been healthy and active, though I am overweight and enjoy my sweets and alcohol. Within the past few months, Iíve developed constant aching in my toes, almost a burning feeling that I understand could be peripheral neuropathy. I do have plantar fasciitis so Iím hoping itís just a manifestation of that. My blood sugar has always been normal. Iím currently waiting on new bloodwork to see if there are any new issues. However, I am asking here to see what experience others have had with HIV-related peripheral neuropathy. Is it something that can be improved or reversed, or does it generally worsen over time? Has anyone had this issue as a result of any of the medications Iíve listed?

I did do a cursory search of the boards for this topic but most were in the ďDo I Have HIVĒ section.


Offline Jim Allen

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Re: Experience with peripheral neuropathy?
« Reply #1 on: July 07, 2020, 05:46:35 pm »

In the living with HIV there are 4 pages of threads on neuropathy, and far more in the meds section, you could also search for PN as example.


Anyhow really sorry to hear you're worried about peripheral neuropathy. Hugs.

Neuropathy from HIV meds is normally the older meds like "zalcitabine" as example or related to past untreated HIV causing damage but the best thing to do is work with your doctor to confirm and rule out common causes etc.  https://www.poz.com/basics/hiv-basics/peripheral-neuropathy

If you do have neuropathy issues there are treatments to manage the symptoms depending on how bad it is and what works for you.

It tends to be different for people, personally my pain levels were so bad at night I used to wake to screaming and panic thinking someone was hurt before realizing it was me screaming. The pain ranges from a deep ache and lack of feeling in other parts of my legs/feet to molten lava poring down the inside of my leg at other times.  It's much milder at times thankfully like flesh being ripped out of my leg and feeling ice cold water running down one check of my ass when of course it's perfectly dry  ;D

Anyhow, that's just me, I do take pregabalin that tends to help.

Best, Jim
« Last Edit: July 07, 2020, 06:32:08 pm by Jim Allen »
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Offline Texland

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Re: Experience with peripheral neuropathy?
« Reply #2 on: July 11, 2020, 11:22:42 am »
Hey Rosie,

HIV meds can cause neuropathy, usually it's older medications. If you have developed neuropathy, there could be a physical cause for it. HIV docs can get tunnel vision and diagnose according to their experience.

I had multiple doctors miss a spinal nerve compression, saying the neuropathy was a medication side effect. The only treatment offered was gabapentin. It can have strange side effects. In my case, it made me constantly use the wrong nouns when speaking.

Offline weasel

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Re: Experience with peripheral neuropathy?
« Reply #3 on: July 21, 2020, 10:59:00 am »

   Hi Rosie ,
                i have neuropathy , my left foot started about 10 years ago , now my right foot is going numb  :'(

   I have been poz for decades , not sure if it is my Genvoya ? My VA doctors are clueless . I often wonder what they do know , they all look at me and say : " You LOOK fine "  , it annoys me to have a doctor say I LOOK fine .

     Anyway I hope it does not progress for you .

                                                                        be well , Carl
" Live and let Live "


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