pre existing neuropathy

[planonstaying]

I have neuropathy. Since other factors have been eliminated it's assumed it' hiv related because I didn't have the problem before. I will be starting haart after my next appointment. I am of course concerned about side effects but beyond that I am wondering if maybe my neuropathy will get better as a result. Has anyone here experienced an improvement in hiv related neuropathy after starting Haart? I am also scheduling vacation the week I start Haart. Did people generally feel that is a good plan or unneccesary?

[thinkertwo]

Vacation is a great idea.  Have lots of things to do that can keep you occupied but leave everything open ended in case you need to rest or feel some changes that are hard to deal with... Also, I would use us.  Let us know the meds. you are on and if something comes up that is not serious like rash...ask us.  When I first started I ran to the doctors every other day.  The co pays got expensive and they wouldn't answer anything without seeing me...many symptoms are common and normal, if your concerned in anyway see your doctor. 

What type of neuropathy do you have and does anyone know the cause; HIV related or did it start with HIV infection?  I have an unusual form of Motor Neuropathy that started with infection and has gotten worse...I'm very interested in speaking to others in similar situations....

[Ann]

Plan,

If hiv is indeed causing your neuropathy, it may improve when you're on the meds. It would likely depend on how much damage is already done.

However, given your great numbers - a high CD4 and a very low viral load - it's really rather doubtful hiv is the cause of your neuropathy. Hiv-related (as opposed to med-related) neuropathy normally only happens in the presence of a very high viral load and low CD4s. (please don't think I'm doubting what you and your doctor have narrowed it down to - I'm just sayin', as they say...) 

Good luck with starting meds - I hope they do the trick for you.

Ann

[thinkertwo]

Ann,

That's very interesting to me...Since I've been told that I"m one of under 50 people in the US with this type of Motor Neuropathy.  I was also assured that once i started Haart that the symptoms would stop, reverse...It's gotten worse.  I'm with you, over the last 2 years I am convinced (against 2 med teams at MA Gen and Beth Israel) that my condition is not HIV related but a "double whammy"...only one ALS doctor in agreement....I'm kind of stuck and have been told to try Ivig treatments with a 1 in 1000 shot that they may help....sorry to take up your space planonstaying....maybe it can help both of us....

[planonstaying]

(Hanks for the support I am a bit scared.They are saying hiv related neuropathy because of the timing and the elimination of other causes.I understand it's unusual but it does happen ;/. I saw a Neurologist at Yale whoose area of expertise is neuropathy and He seemed quite confident it was hiv related and it probably wouldn't get worse. Although it is just small fibre damage He said with sometimes it can cause severe symptoms. Of course it could be frm something else and the timing coincidental since it's cause is sometimes unattributeable.
I see the Dr 6-22 so still. Have some time to adjust. With my numbers I thought I had years to go butresearch is pointing to waiting as unwise.

[BT65]

Hey Plan,

I have neuropathy, but it started back in the early 90's from the meds they used back then.  Since then, I've been diagnosed with diabetes, which for a long while went uncontrolled, which, of course, made the neuropathy worse.  I take Neurontin for it, and even though my feet are numb, the Neurontin (plus I take a high dose of Ibuprofen) helps a lot with the pain.  So, there are treatments for neuropathy if it doesn't improve.  Keep your chin up.
  Luv,
Betty

[planonstaying]

Ty, Neurontin worked for a bit but, Lyrica has been better and with less visual disturbances but a bit more sedating. It's schedule one but anyone abusing it should switch to otc cough medicine it's hella cheaper and stronger No narcotics for me  they are like pringles  I can't have one and know it. I guess if it ever gets there my friends will be busy delivering them or I could get a daily dispensor. My thinking just  changes   the second  I feel the oxycodone.
 I still have trouble once my shoes are on a while and  at night it can suck but it's manageable. it would be wonderful if the drop in inflammatory markers  treatment  gives  calmed my nerves down. Anyway, it doesnt keep me isolated which it was initially.  Shoes= pain was a license to  crawl in my cave.

[J.R.E.]

I have neuropathy. Since other factors have been eliminated it's assumed it' hiv related because I didn't have the problem before.

My Neuropathy didn't start until several months after medication was started.  The worst was in 2004. It very well could have been caused by long term effect of the virus, and the fact that my immune system was shot in 2003.( 16, t-cells) But, once again ...the neuropathy didn't start, until I started on medication.

I still have neuropathy. I am not taking any prescription for it. Most days it's tolerable, some days mildly annoying, but not all that painful. It's not as painful as it was in 2004 !!

In 2004, I did try Neurontin, with very little effect back then.



Ray