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Author Topic: Different Peripheral Neuropathy Treatment.  (Read 2747 times)

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Offline just_joe

  • Member
  • Posts: 42
Different Peripheral Neuropathy Treatment.
« on: August 05, 2007, 01:59:33 AM »
Aside from the normal medical prescription medications like Neurontin or B12 injections, has anyone else had any luck with anything else (medical or non-medical) that can lessen or helps the pain of peripheral neuropathy?  ???

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: Different Peripheral Neuropathy Treatment.
« Reply #1 on: August 05, 2007, 06:59:34 AM »
Hello,


NOPE !  I tried the Neurontin early in 2004, with no benefit from it. My neuropathy was at it's worse in 2004. It improved once my t-cells got higher. Seemed to come on over a period of a couple weeks. I was in a study for the capsaicin patch,( earlier this year), and did not have any positive results with that either.  Sometines I will take an anti inflammatory, if the pain gets a little intolerable, but that is seldom right now. I don't like taking any more pills than I have to. Also, I never tried the B-12 injections. Wish I could give you some good news, I remember very well how painful my feet were in 2004. I am also dealing with neuropathy in my arms, from about the forearms to the hands. It is also somewhat tolerable right now


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Miss Philicia

  • Member
  • Posts: 24,107
  • celebrity poster, faker & poser
Re: Different Peripheral Neuropathy Treatment.
« Reply #2 on: August 05, 2007, 11:52:07 AM »
Neurontin works OK for me, but my PN is a lighter load than most people.
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Different Peripheral Neuropathy Treatment.
« Reply #3 on: August 05, 2007, 12:56:13 PM »
I first developed peripheral neuropathy in 1996. It started out as mild tingling in my feet, but over a couple of months it became extremely painful--burning feet and shooting pains that felt like electric jolts up my calves. I'm pretty sure I got the neuropathy as a result of several years on d4T and ddI.

I would sometimes wake up at night and have to soak my feet in cold water to ease the burning in my feet.

I tried many different remedies. First came the tricyclic antidepressants, Elavil and Nortryptilene. All they did was make me groggy. I tried Neurontin, escalating the dose to a ridiculous level (can't remember exactly what it was) before I gave up on that.

I tried over-the-counter capsaicin cream, but that created a terrible burning that was worse than the neuropathy.

I went on a study for a drug called Nerve Growth Factor. It was a placebo-controlled study, but at the end I found out I was getting the real drug. It didn't help ease the pain. I guess the drug wasn't successful, since I don't hear anything about it anymore.

I also tried an expensive series of acupuncture treatments, which did not do anything for the neuropathy pain.

Over time, the pain has gradually eased. It's now bearable, and some days it hardly bothers me at all. Other times it can be very uncomfortable. At first I could only wear sandals, since regular shoes were so uncomfortable. Now I can wear regular shoes. I buy a brand called SAS (San Antonio Shoes). The leather is very soft, and they are the most comfortable shoes I've ever had. I've talked to other people with various foot problems who also swear by SAS shoes.

I hope this helps.

Allan

Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Ay Pablo

  • Member
  • Posts: 11
Re: Different Peripheral Neuropathy Treatment.
« Reply #4 on: August 05, 2007, 01:36:17 PM »
When I first started taking my meds I experienced some PN.  I started taking alpha lipoic acid and within a few weeks, things got much better.  I must add that my symptoms were not severe, as most of what I experienced was numbness and tingling (very minor acute pain). 

P

Offline just_joe

  • Member
  • Posts: 42
Re: Different Peripheral Neuropathy Treatment.
« Reply #5 on: August 05, 2007, 05:58:14 PM »
Thanks for the replies guys. I have a friend in LA that just started doing the B=12 injections in his feet. I'll have to find out from him how that is working for him although I can't imagine giving them to myself but I've learned to never say never. My pain is probably the most painful at night once I'm actually off my feet. I can sometimes barely get to the bathroom because of it. I've tried to make it a normal routine to mix lotion and Gold Bond powder together and massage my feet when I have time and I've actually increased the B-12 to every day instead of three times a week. I may even try increasing the Neurontin but I don't want to walk around groggy all day. Going to try some Motrin today to see if that makes a difference. It's so hard to gauge because some days are good to okay and then some are just plain bad.

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Different Peripheral Neuropathy Treatment.
« Reply #6 on: August 06, 2007, 05:18:31 PM »
It's so hard to gauge because some days are good to okay and then some are just plain bad.

Yep, that's how mine goes. I can go for weeks with just a bit of annoyance, then BOOM! The past few days have been bad, lots of the shooting pains.

The burning feet are ever present, although it also ebbs and worsens.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline pozattitude

  • Member
  • Posts: 909
  • Enjoy
    • to find out more about me....
Re: Different Peripheral Neuropathy Treatment.
« Reply #7 on: August 06, 2007, 06:45:12 PM »
Yep, that's how mine goes. I can go for weeks with just a bit of annoyance, then BOOM! The past few days have been bad, lots of the shooting pains.

The burning feet are ever present, although it also ebbs and worsens.

HUGS,

Mark


are you sure you are not describing my PN?...lol

my doctor put me on Cymbalta, which is an anti depressant but also shown to work for PN.  I don't feel much help in the PN area with this drug.
 I use cannabis and it works great, the burning becomes a warm nice feeling and the pain is just gone.

Rich
(who leaves work at 4 and is home by 4:20)  ;D
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Peter6836

  • Member
  • Posts: 391
  • Me and my Granddaughter Noa
Re: Different Peripheral Neuropathy Treatment.
« Reply #8 on: August 06, 2007, 08:23:38 PM »
I have found that cannibas is the only thing that has helped me so far. I have tried other things and my doctor is now sending me for a EMG which I heard can be a waste of time, as well as quite uncomfortable. I have also heard from others in my support group that many of the meds do not really work for them. So I rely on the cannibas I also find the prozaic effect to help as well. I do use it in moderation and find that it does not effect the rest of my life in a negative way.
Peter

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: Different Peripheral Neuropathy Treatment.
« Reply #9 on: August 06, 2007, 08:42:42 PM »
I have tried other things and my doctor is now sending me for a EMG which I heard can be a waste of time, as well as quite uncomfortable.

It's not too bad Peter. I had that done already, they wire you up and shock you !! Sounds actually worse. The procedure took about 30 minutes to complete, and the results are read right after completion.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Maestro

  • Member
  • Posts: 225
Re: Different Peripheral Neuropathy Treatment.
« Reply #10 on: August 06, 2007, 09:54:03 PM »
My Uncle has pretty bad PN.  He beats it down with 180mg of oxycontin 3x a day.  Swears it helps!


 


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