Neuropathy Treatment?

[superdupe]

 I've been POZ for 3 1/2 years now and have suffered with the annoying, painful jabs in my feet and legs for as long as I can remember. Sometimes its so debilitating I can hardly walk. I've searched the forums but have a tough time looking for a true treatment option. My neurologist has simply put me on a regimen of amitriptyline 50mg at bedtime, but it doesn't seem to help and I'm groggy all day.
  This neuropathy is the only thing that gets to me. My numbers are fantastic, (vl-undetect and CD4-1032).
   Anyone have any suggestions?

[risred1]

Have you looked at Carnintine, Alpha Lipoic Acid and NAC?

[allanq]

superdupe,

Is your doctor sure that the pains you're having really are neuropathy? Maybe a visit to a neurologist is in order.

Do you also have burning and tingling in your feet? Those symptoms are usually present in neuropathy? Do the jabbing pains feel like electric shocks?

What drugs are you taking? I've had neuropathy for over 11 years. I believe it is due to the Zerit and Videx that I took for several years. If you are taking either of those drugs, you should switch to a different combo.

I've tried various drug remedies, including amitriptyline and Neurontin, but they didn't help me at all. Acupuncture helps some people, but it didn't do anything for me.

Over time, my neuropathy has become less painful than it was initially. I no longer get the very painful electric jolts up my calves that I used to get. However, it's still a major discomfort for me.

The supplements recommended by risred1 do work for some people, so that's something definitely worth trying.

Good luck.

Allan

[Miss Philicia]

I use 3 x 300mg of Neurontin (generic is Gabapentin)  and hour before I go to bed.  Yes, it makes me groggy but by the time I wake up I'm have none of that at all.  What you describe in terms of PN sounds more extreme than what I have, so my guess is that you need to investigate something stronger.  In my experience there is little in terms of a silver bullet with PN, as it differs so much in each individual though I'd still wager that Neurontin is the most common thing they throw at it initially, mostly because it has zero interaction with any HIV medications.  However, be mindful not to go to high in dosage with this medication.

Neurontin also has the side effect of being a mood stabilizer, and really, can't we ALL use some of that love?

There's a good write up on PN in the "Lessons" section in the upper right corner of this web site.  As well, John Hopkins has some good summary of it, and lists about 10 possible medications to use.

http://www.hopkins-hivguide.org/diagnosis/organ_system/neurologic/neuropathy__peripheral.html?contentInstanceId=9290&siteId=7151

Are you, or have you been on, ddI and/or d4T?  Alcohol intake can definitely worsen PN as well.

[pozattitude]

superdupe,

What drugs are you taking? I've had neuropathy for over 11 years. I believe it is due to the Zerit and Videx that I took for several years.
Allan

Zerit did it for me and I'm sure Videx too...(I still take Videx since I don't have many options in that area).  I took Cymbalta which is an anti depressant but found to work for PN in studies...it doesn't really take the pain away, but it helped with the burning and tingling sensations....
I just stopped taking it (my choice....I got to a point where I will only take my HIV meds, nothing more).  Thank you Allan for the Trader Joe's fish oil tip for my cholesterol....I have it under control with exercise and the supplements you told me about and I am off Lipitor too....  
PN has been one of my major concerns regarding my riding in AIDS LifeCycle but I noticed that just a good 800mg dose of Motrin will alleviate the pain when I am riding and once I am home for the evening I just use marijuana and that does wonders for my PN....okay  call me a pot head if you want   , but it works.....

[superdupe]

  I'm currently taking Truvada and Viramune for the HIV, and yes, it was my neurologist who prescribed the amytriplyline for the neuropathy, after going for a 3 week study. I havent tried the herbal and vitamin route yet. As far as the "herb" treatment I wish I could, my job wouldnt permit it woring on airplanes..lol

[minismom]

At least you were given something.  We took mini to an orthopedist (referred to by a neurologist) who looked at mini, said , "yeah, she's super tight.  And in pain, too?  Wow."  Then told us to give her cortozone shots and botox injections.  I lifted mini off the exam table and we promptly left.  On the way down the hall, mini looked at me and said, "mom, that doctor was whacked wasn't he?"  From the mouths of babes!

mum

[wishful]

im also on Truvada and viramune..same combo for 4 years..(cept it was emtriva n viread=truvada)..i noticed that my feet "go to sleep" for no apparent reason but i havent been dg with neuropathy as of yet..Maybe its cus im fat..lol who knows..

[J.R.E.]

Hello There,

I am on a regimen, similar to yours. I am on viramune, Epzicom and Viread. My neuropathy started in the early part of 2004, probably less the 5 months into the starting of treatment.


I remember how painful it was, the only thing I can tell you , is that as my t-cell count increased and the viral load decreased, the neuropathy lessoned.

I was given a prescription for Relafin (SP) back then, but it didn't really seem to accomplish much. The doctor also gave me a months supply of Amitriptyline, that I also held off on. ( still have it in the package, and it's probably expired by now)

There are some days that are worse than others, but by no means is it as bad as it was back in 2004. I still prefer to keep my shoes off as much as possible.


Continue searching the forums, perhaps you"ll get some more tips, on dealing with the neuropathy.

By the way, welcome to the forums...



Hang in there-----Ray

[superdupe]

Hello There,

I am on a regimen, similar to yours. I am on viramune, Epzicom and Viread. My neuropathy started in the early part of 2004, probably less the 5 months into the starting of treatment.


I remember how painful it was, the only thing I can tell you , is that as my t-cell count increased and the viral load decreased, the neuropathy lessoned.

I was given a prescription for Relafin (SP) back then, but it didn't really seem to accomplish much. The doctor also gave me a months supply of Amitriptyline, that I also held off on. ( still have it in the package, and it's probably expired by now)

There are some days that are worse than others, but by no means is it as bad as it was back in 2004. I still prefer to keep my shoes off as much as possible.


Continue searching the forums, perhaps you"ll get some more tips, on dealing with the neuropathy.

By the way, welcome to the forums...



Hang in there-----Ray

Thanks Ray, I appreciate your response and everyone elses. My numbers are unusually good, doc tells me that cd4 of 1032 is better than some people without HIV, this is why I cant figure out why all this pain.
     It appears to be a vicious cycle. Because of the apin I'm way less active, thereby gaining at least 45 lbs over the past 2 years, so I'm sure the weight gain has a lot to do with it.  Kinda funny when my doctor simply tells me to join a gym when I'm in so much agony after standing on my feet all day at work that all I wanna do is go home and sleep.
                                            Thanks again everyone,
                                                             Shawn 

[J.R.E.]

Hello Shawn,


You've probably already read the lessons regading PN.In case you haven't, You may get some additional info from here :


http://www.aidsmeds.com/articles/Neuropathy_6910.shtml


Ask your doctor to keep in contact with you regarding any studies that may be going on in your area.  I was involved with one earlier this year. Unfortunately, it did't give me any good results, but I am still glad that I participated anyway. Others in this study had favorable results. Hows your blood/glucose, and cholesterol levels doing ?


I posted about that study here :

http://forums.poz.com/index.php?topic=8243.0




Ray