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Author Topic: Perpherial Neruopathy or am I worrying over nothing?  (Read 6762 times)

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Offline Blixer

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  • Posts: 712
Perpherial Neruopathy or am I worrying over nothing?
« on: April 17, 2007, 11:29:23 PM »
Ok, my latest issue started Saturday.  I'm basically one year into meds.  But this past weekend I started noticing a slight tingling and burning in my feet and once in a while in my hands.  It is nothing more than an irritation at this point, but it hasn't gone away after 4 days. I can't say it is any worse, but I also can't say it is any better.  Sometimes the tops of my feet feel hot.  Sometimes it is more of a tingling or prickling type of feeling.  Once in a while there will be a shooting pain through my foot.  It is affecting both feet.  I also notice it slightly in my hands and the little finger side of my left hand has had just a slight numb feeling.

Activity or rubbing seems to take the tingling, prickling, or numbness away for a bit.  But it does seem to return.

I'm on Videx (ddi) which is known for sometimes causing PN.

Am I worrying for nothing?  Should I just wait it out a while?  Do I need to contact my doctor?  Has anyone else had experiences like this?

Thanks!
« Last Edit: April 18, 2007, 12:11:29 AM by Blixer »
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline thunter34

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  • Posts: 7,318
  • His name is Carl.
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #1 on: April 17, 2007, 11:35:18 PM »
I haven't had an experience like this (not on that scale), but I would still suggest you put in a call to your doctor just to let them be aware of it. 
AIDS isn't for sissies.

Offline newt

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  • Posts: 3,886
  • the one and original newt
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #2 on: April 18, 2007, 03:20:13 AM »
If the numbness, tingling or pain is symmetrical in both hands or both feet it is more likely to be a side effect of treatment.

There could be other causes eg herpes virus related etc, but you have been on Videx long enough for PN to be a possibility.  A neurological exam can help with diagnosis.  HIV itself and antiretrovirals have been implicated in the development of PN.  Serum lactate concentration is helpful (90% sensitive and 90% specific ) in separating drug from  HIV virus nerve damage, and is a simple diagnostic test (>2.2 mmol/l serum lactate suggests drug related PN).

The "d" drugs (d4T, ddI) are the most likely suspects but 3TC can be a sinner/contributer too. Since you can't do Ziagen (abacavir), the easiest/most obvious/first nuke option change wise (for this is the best solution really) would be to switch the Videx for Viread (tenofovir).

If it is PN it is important to effect a repair before the damage is permanent and irreversible (maybe using some acetyl-l-carnitine, but if you catch it early time is a great healer). 

Efficacy of acetyl-l-carnitine for antiretroviral toxic neuropathy

- matt
"The object is to be a well patient, not a good patient"

Offline Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #3 on: April 18, 2007, 11:55:16 AM »
Thanks Matt!  The tingling and stinging is in both feet.  It isn't constant though and it isn't bad, just noticeable when it happens.  For instance, today I have hardly noticed it.  I don't notice it at night.

Is it likely for PN to come on suddenly?  I mean, I was in to see my doctor on Friday and was really feeling good about my first year of treatment and everything.  Very few side effects.

In terms of abacavir, my main issue was the extreme muscle pain in the legs right after I started meds a year ago.   It was never confirmed that I was having a hypersensitive reaction to the abacavir.  I've heard there is a genetic test that is being used as a predictor for hypersensitivity to abacavir.

The biggest frustration is in trying to get good information.  There just seems to be so much the isn't well known.

As a side note I've heard back from my clinical trials unit and after talking with the doctor they want me to wait through the weekend and if the symptoms persist, then they want to see me in the trials unit the first of the week.
« Last Edit: April 18, 2007, 03:26:18 PM by Blixer »
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline newt

  • Member
  • Posts: 3,886
  • the one and original newt
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #4 on: April 18, 2007, 06:16:49 PM »
PN can come on  (become noticeable) sudden like.  The timing is consistent with a ddI-related nerve damage.  The test for abacavir hypersensitivity is the HLA test (see eg Use of HLA B5701 genetic testing to reduce abacavir hypersensitivity reactions and HLA-B*5701 Genetic Test Predicts Risk of Abacavir Hypersensitivity).  It is now a routine test in some UK clinics.

- matt
"The object is to be a well patient, not a good patient"

Offline Blixer

  • Member
  • Posts: 712
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #5 on: April 18, 2007, 06:52:12 PM »
Thanks again Matt!  I just find out that I know so little. I just know that something is now a bit different in my body.  Maybe it nothing... but I am concerned. 

I don't really notice the burning or tingling when I'm pretty active.  I didn't notice it through the day today.  But now that I'm sitting down to teach my online class I have had some periodic sharp random pains.  Nothing bad, just noticeable.  Would that be consistant with PN or is there any way to know?   Sometimes I wonder if I just need to bail out of this study and go on my own.  I've got decent insurance for now.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline risred1

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  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #6 on: April 18, 2007, 08:57:20 PM »
First, I'm not a doctor.....

PN is also a something that diabetics deal with. There is a school of thought that the supps that they take can help HIV realted PN.

Alpha Lopaic Acid, NAC and Carnintine are the most common supps that may help with PN.

I suggest you check out the Newyorkbuyersclub.org site for information. Here is a sample:

http://www.newyorkbuyersclub.org/resources/all-about-supplements/index.html

 NAME:     Alpha-lipoic Acid (Also called thioctic acid)
DESCRIPTION:    

Alpha-lipoic acid (ALA) is a fatty acid and antioxidant. Recommended for liver protection.
FUNCTION:    Alpha-lipoic acid (ALA) is used to protect the liver, treat peripheral neuropathy, treat lipodystrophy, slow HIV replication, and to prevent or treat HIV-related dementia.

Alpha-lipoic acid is very important in several ways. It easily crosses cell membranes and works as an antioxidant in both lipid (fatty) and aqueous (watery) parts of the body. It can counter many different forms of oxidative stress and prevent the cellular damage they might cause.

Alpha-lipoic acid both directly reduces oxidative stress in the body and indirectly spares, recycles or regenerates the other major antioxidants.

It is an important component of protocols aimed at preventing mitochondrial dysfunction and all the problems it can cause, including neuropathy, myopathy, bone marrow suppression (and resulting decreases in red and white blood cells and platelets), pancreatitis, fatty liver, lactic acidosis, and fat loss (lipoatrophy).

One of alpha-lipoic acid’s other very important uses is as a liver protective agent. It is very important to the liver cell metabolic pathways (the pathways used when the liver performs its important functions, including the breakdown and processing of toxins) and can be rapidly depleted when the liver is under stress. Since both HIV and hepatitis C induce glutathione deficiency, and that deficiency can allow the liver to become damaged by oxidative stress, alpha-lipoic acid’s effectiveness in raising cellular glutathione levels is probably very important for liver protection and repair. Its ability to help protect the liver’s mitochondria may be very important to help prevent the development of a fatty liver.

Alpha-lipoic acid has been shown to increase insulin sensitivity and help reduce blood sugar in non-people with HIV with Type 2 diabetes and, thus, might also be considered as a possibly useful agent for those with blood sugar problems.

Alpha-lipoic acid may also be useful for cognitive dysfunction in HIV disease. Tissues of the central nervous system are known to be particularly vulnerable to oxidative stress because of their high rate of oxygen consumption and high mitochondrial density. The mitochondria produce lots of free radicals during normal oxidative metabolism and, especially without sufficient antioxidant protection, the mitochondrial tissue may be damaged. It is believed that this sort of oxidative stress damage may be partially responsible for neurodegenerative diseases. In animal studies, alpha-lipoic acid has been shown to improve memory, apparently by reversing the damage that had been induced by oxidative stress in the brain.
DOSAGE:    Note: a time-released form is very important because alpha-lipoic acid has a very short half-life (the time that it takes for half the substance to disappear) in the bloodstream. By using products that release the alpha-lipoic acid gradually over time, you increase the total time that the nutrient will be available and working in the body.

Some PWHIV take 300 – 600 mg per day if attempting to correct high liver enzyme levels. Others take 300 – 400 per day if using high-dose garlic and are liver-impaired. PWHIV also take 200 – 300 per day if not liver impaired, but protecting from the ill effects of high-dose prophylactic drugs. Finally, many PWHIV take 300 – 400 per day for a high-dose multifactorial antioxidant protection which helps to recycle other antioxidants (e.g. vitamin C/vitamin E) which many are using. Many also use the supplement to prevent or manage neuropathy.
DATA:    One small study (10 people with HIV with advanced disease) showed a combination of effects from supplementation with alpha-lipoic acid including increases in CD4 cells, increases in blood levels of vitamin C and glutathione, and decreases in the body compounds that result from oxidative stress (thus showing that it was indeed working well as an antioxidant).

Several other studies have pointed to ALA's positive effects in treating diabetic peripheral neuropathy (details of these studies on Dr. Jon Kaiser's site).

Although most of the HIV community has focused in the past on N-acetyl-cysteine (NAC) as a way to raise glutathione, research carried out by Dr. Lester Packer at the University of California at Berkeley has shown that alpha-lipoic acid may be the best way to raise glutathione levels in people with HIV, thus providing protection against oxidative stress and disease progression.

Both test-tube and human research has shown the potential for alpha-lipoic acid to possibly serve as an antiretroviral agent. In the test tube, it has been shown to inhibit replication of HIV in both acutely and chronically infected cells, and to have synergistic effects when combined with AZT. Test tube research done at Kumamoto University in Japan has shown that alpha-lipoic acid significantly depresses both HIV tat gene activity and HIV infectivity. German test-tube research confirmed these findings, and follow-up human studies by the same researchers showed that it does have antiretroviral effects in people with HIV, reducing viral loads.

Test-tube research done in the Department of Molecular and Cell Biology at the University of California, Berkeley, has shown that alpha-lipoic acid inhibits NF-kappa B activity. Since NF-kappa B is, in essence, an "on-off switch" for the activation of HIV and tat inhibition is considered a promising antiretroviral approach (and of course anything non-toxic that effectively suppresses viral replication and reduces infectivity is immensely desirable), research on alpha lipoic acid’s potential usefulness in this regard should certainly continue.
CAUTIONS:    There have been virtualy no side effects reported related to ALA supplementation.

Alpha-lipoic acid may reduce the amount of minerals in the body through a process called chelation; therefore it is best taken with a good multivitamin.

PWHIV should let their doctor know that they are taking this supplement. Some may be able to tolerate higher doses of liver-toxic drugs than would normally be the case. Never stop suddenly while continuing to take pharmaceutical agents without closely monitoring your liver enzyme levels.
FOR MORE
INFORMATION:    Lyn Patrick, ND (Doctor of Naturopathy), in Alternative Medicine Review, offers a comprehensive and well-documented overview of the use of several supplements in "Nutrients and HIV: Part Three – N-Acetylcysteine, Alpha-Lipoic Acid, L-Glutamine, and L-Carnitine"
   
RELATED
PRODUCTS:    Alpha Lipoic Acid (NYBC) Each bottle 180 capsules. Each capsule, 100 mg of high-grade alpha lipoic acid.
PRODUCT NOTES:    An indispensable agent for anyone who uses long-term prophylactic drugs in order to protect against liver damage, and one of the New York Buyers' Club's best-selling suplements.
DISCLAIMER:    These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #7 on: April 18, 2007, 11:28:28 PM »
Blixer,

The symptoms you describe are almost exactly how my peripheral neuropathy started back in 1996. It began with a tingling sensation in both feet, then progressed to tingling and burning. At times the burning was so intense that the only relief was to soak my feet in very cold water. I also had the kind of shooting pains that you mentioned--like an electric shock shooting up my calves.

I think you should make an appointment with your doctor as soon as possible and try to get off the ddI.

My PN has calmed down over the years, but it hasn't gone away, even though I went off the d4T that was presumably causing it.

Keep us posted.

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 Blixer

  • Member
  • Posts: 712
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #8 on: April 18, 2007, 11:38:34 PM »
Thanks Risred and Allan!  This is all so new.  I know I can benefit from the shared knowledge of those here.  I don't even know what to ask right now.  I know Newt suggested a test that might show evidence of drug related PN.  I do know that the trials nurse has already suggested that the doctor might change the meds.

Allan, did it start suddenly for you.  I mean, I just kind of noticed it Saturday night.  And how long to progress from the tingling to the intense burining.  I noticed that when I put my tennis shoes on this evening I kind of had a hot feeling in the feet.  None of it so far has been too painful, but I dont' want to wait until it gets painful if that is what it is.  But if is something else, then changing the meds won't help.  There is just so much you dont' know.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #9 on: April 19, 2007, 12:27:15 AM »
I am assuming that what is going on with your feet (and to a lesser extent, your hands) is indeed PN because the symptoms you are experiencing so closely conform to what I went through.

My PN started as a minor tingling sensation in my feet. It wasn't painful for the first month or so, and I had no idea that it was the onset of PN. Over a period of about two months, the tingling became more severe and the burning sensation developed. By the time I finally went to my doctor, it had become extremely painful.

Newt is right in stressing that it is important to deal with this as soon as possible. If the ddI is causing nerve damage, it's best to stop the drug right away, before it can do any further damage.

Unfortunately, there is no way of knowing whether the nerve damage is being caused by the meds or by the HIV virus itself. There are tests called nerve conduction studies that can give a definitive PN diagnosis, but I don't think those tests should be necessary. The symptoms are clear enough to make the diagnosis without resorting to those tests, which are kind of unpleasant.

I have heard of people getting relief from alpha lipoic acid and carnitine. However, these supplements did not work for me.

Good luck to you. It's good that you're catching this at an early stage.

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 Blixer

  • Member
  • Posts: 712
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #10 on: April 19, 2007, 10:36:22 AM »
Thanks for the information Allen.  It is very helpful to know the experiences of others.  What I'm having is just so non-specific that it makes it kind of difficult to describe to the doctor.  Sometimes I wonder if I"m just noticing something that was already there, but then again, there is that gut feeling that this is different.  The tingling or burning isn't constant.  Sometimes I don't notice it all all.  Sometimes it is very slight.  It seems to feel like it is in different places.  Sometimes it may just be an aching like in a toe or in the middle of the foot or in the heel or in the fingers.  Sometimes there is just a general sensation of tingling over the top of the foot.  There has just been so much inconsistency.  I had to change out one med after only 17 days on meds.  Now here we are a year later and I'm having this.  I just keep asking myself if it's a real problem or if I'm just making something out of nothing.  But if it is PN, I realize how important it is to handle it before things get worse.  It is my understanding that HIV related PN usually happens when there has been significant damage to the immune system.  My CD4 counts were like 520 when I started meds.  The highest measured VL was 144,000 and that was my first test.  It was almost half of that on the second one.  So if this is PN it seems like it would most likely be drug related.

Again, this is so frustrating to know what to do.  I dont' want to wait until the pain is significant like you described.  For instance, right now I feel a very slight tingling or burning in my toes and just a slight odd feeling (like you would have if your hands were cold) in my hands.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline risred1

  • Member
  • Posts: 419
  • My Source for Supps - www.newyorkbuyersclub.org
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #11 on: April 19, 2007, 10:19:28 PM »
I do not want to overstate that alpha lopaic acid, NAC, Carnitine are a slam dunk for relief. I only know that it does help some people.

I am mostly aware of PN from friends who are type I diabetic and middle aged. I have often seen them hobbling around the office for a while. Because of this, the attitude when POZ folks started to complain about these issues, it wouldn't be unusual to have to just "suck it up" as diabetics have been doing that for years.

I do believe, however, that the concerns about PN in both the HIV and diabetic communities is driving research, but it is a tougher issue that treating an infection, as it is a side effect of either ones diabetic or HIV or meds caused issue.

My understanding that HIV based or Med based PN is about the inflammatory response has to HIV and Meds. That is why supps like Alpha Lipoic Acid, NAC and Carnitine may, i repeat, may provide help as the antioxative properties of these substances may offset HIV related inflamatory response. These supps actually depend on vitamin C and E being available as they actually, in some way, keep these anti oxidants active/working.

The usual suspects are encouraged, such as a balanced diet, exercise and correcting deficiencies. Remember that HIV often has been associated with Sulphur depletion in the body as well, and Alpha Lipoic Acid, NAC, Carnitine with a sulphur supp like MSM may help offset those issues.

If you are interested in these supps, you can check them out at newyorkbuyersclub.org. they are a buyers club who specialize in helping immune challenged people, specifically but not limited to HIV infection. they are a 501 C non profit based in new york. They are sincere and try to help as they can by providing nutritive supplementation at a very fair if not best price for quality supplements. I personally take the THIOL NAC product which is a combo of Time Release Alpha Lipoic Acid, NAC and MSM. I also take a Carnitine supplement. I do these as part of a routine I established shortly after i was diagnosed. My Doctor questions whether it was practical to take these supps before I became more symptomatic, one of the limitations of my otherwise excellent physician, but since then he has been more relaxed as I have been able to maintain stability in my cd4 and VL for about 2 years. Regardless, this isn't about me, but things that you can do on your own regarding supplementation as there are really not many treatments other than Pain Killers out there at the moment.

If your PN is at least in part do to a inflammatory response, shutting down or compensating for that response is a possible method for dealing with PN. That does mean diet, exercise and supplements at this time. And there are no guarantees. But you may at least want to take a look at these. You do need to talk to you doc about these supps, but they are widely used, and appear to do no harm, while the upside maybe helpful. As I've stated previously, diabetics have a long history with PN, so that is a place to start to see what is working or helping or mitigating for them.

--------------------

Here is a site you might want to check out as it has links to clinical studies now being done.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm

And here is a short definition of PN:
What is Peripheral Neuropathy?
Peripheral neuropathy describes damage to the peripheral nervous system, which transmits information from the brain and spinal  cord to every other part of the body.

More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves -- motor, sensory, or autonomic -- that are damaged.  Some people may experience temporary numbness, tingling, and pricking sensations, sensitivity to touch,  or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting,  paralysis, or organ or gland dysfunction. Peripheral neuropathy may be either inherited or acquired. Causes of acquired peripheral  neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism,  and vascular and metabolic disorders. Acquired peripheral neuropathies are caused by systemic disease, trauma from external  agents, or infections or autoimmune disorders affecting nerve tissue. Inherited forms of peripheral neuropathy are caused  by inborn mistakes in the genetic code or by new genetic mutations.

Is there any treatment?
 
No medical treatments exist that can cure inherited peripheral neuropathy. However, there are therapies for many other forms.  In general, adopting healthy habits -- such as maintaining optimal weight, avoiding exposure to toxins, following a physician-supervised  exercise program, eating a balanced diet, correcting vitamin deficiencies, and limiting or avoiding alcohol consumption --  can reduce the physical and emotional effects of peripheral neuropathy.  Systemic diseases frequently require more complex  treatments.

What is the prognosis?
 
In acute neuropathies, such as Guillain-Barré syndrome, symptoms appear suddenly, progress rapidly, and resolve slowly as damaged nerves heal. In chronic forms, symptoms begin subtly and progress slowly. Some people may have periods of relief followed  by relapse. Others may reach a plateau stage where symptoms stay the same for many months or years. Some chronic neuropathies  worsen over time, but very few forms prove fatal unless complicated by other diseases. Occasionally the neuropathy is a symptom  of another disorder.

What research is being done?
 
The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research related to peripheral neuropathies in laboratories at the NIH and also support additional research through grants to major medical institutions across the country.  Current research projects funded by the NINDS involve investigations  of genetic factors associated with hereditary neuropathies, studies of biological mechanisms involved in diabetes-associated  neuropathies, and investigations exploring how the immune system contributes to peripheral nerve damage.  Neuropathic pain  is a primary target of NINDS-sponsored studies aimed at developing more effective therapies for symptoms of peripheral neuropathy.  Some scientists hope to identify substances that will block the brain chemicals that generate pain signals, while others are  investigating the pathways by which pain signals reach the brain.

 Select this link  to view a list of studies currently seeking patients.
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Blixer

  • Member
  • Posts: 712
Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #12 on: April 22, 2007, 11:12:23 AM »
Well, the studies nurse wanted to take a wait and see approach.  So here I am on Sunday.  The slight burning in my feet is pretty much constant now when I have shoes on.   At least I don't notice it when I'm sleeping.  So that's good.  It isn't a "bad" pain, but it is there.  And of course, based on the study nurses recommendation I didn't call my regular doctor and get an appointment.  Of course, on Friday things were still "perodic" in the stinging and burning.  The soles of my feet are a bit tender now, particularly the balls of the feet, but that is usually only after I've had shoes on for the day.  The study protocol that I'm on says that you just monitor if the "pain" is slight and that you discontinue the ddI and then restart at a lower does if the pain reaches moderate.  So I posted all of this out to an HIV doctor that I know and here was his reply (which is exactly what I was thinking myself).
--------------------------------------------

David,
What you're describing in your feet sounds very much like ddI-=related neuropahty. Stopping the ddI and then starting at a lower dose makes no sense: the interruption would put you at risk for drug resistance, and the lower dose has never been studied.

Do you have your own doc, or are you being taken care of entirely by they study people? I hope you have your own doc, because it sounds like the people currently making decisions are making them in an effort to keep you on the study, which is understandablye, but the decisions are not necessarily in your best interest. I always encourage people on studies to have their own doctor who can view a paitent's partipation in a study as the advocate of the patient, not the study. The only reason you're not on Truvada is because a switch from Epzicom to Truvada wasn't allowed by the study. But now you're having clear side effects from Videx, and your goal should be to get off the Videx without jeapardizing your virologic control, either by switching to Truvada or to Combivir (which might be allowed if Truvada is not). If that means you have to come off study, so be it. If the study requires that you stay on a drug that's hurting you, or that you interrupt therapy or use an untested dose of the drug that's hurting you, then the risk:benefit ration of continued participation in the study is no longer favorable, and you should withdraw. I'd suggest that you talk this over with both your own doctor and with the prinicpal investigator of the study.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline allanq

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #13 on: April 22, 2007, 12:10:00 PM »
David,
I saw your question to Dr. Gallant on the Johns Hopkins website. Over the years I've posted at least a dozen questions to him, and he's always given me excellent advice.

I want to stress again that you should not feel pressured to stay in that study. You mentioned in one of your posts that you try to be the "good patient" and do what your doctor tells you to. Over the past 18 years, I have learned that sometimes it's best not to do what your doctor tells you to do! You have done your homework and researched this situation with PN, and you need to trust your research and also your own instincts. Do not allow yourself to be talked or bullied into continuing this study. As Dr. Gallant pointed out, going to a lower dose of ddI would make no sense and could in fact be harmful.

Be insistent! No more "wait and see"! If the doctor and nurse do not respect your wishes, you need to find another doctor.

Best of luck to you.

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 Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #14 on: April 22, 2007, 04:57:53 PM »
I totally agree with you Allan.  And that is why I got a "second opinion" doctor a year ago when I had such issues when first starting meds. I wanted someone who had no "other" stake in the issue.  I know my ID doctor is very good, but I also know that there is a competing priority in this case and that is keeping me in the study.  I know that he wouldn't intentionally do anything harmful and so far I've not talked directly to him, I've only communicated through the studies nurse.  It was the studies nurse that outlined the study protocol and said what it stated.  He did listen before when I was insistant about not restarting if I was on abacavir and he did what was needed to unblind the study and find out exactly what I was on.  When I last emailed them on Friday the burning and tingling was still only periodic.  So I wasn't even sure what was going on.  Over the weekend I've definately had more consistent symptoms develop that I feel are very indicative of early or mild PN.  It still isn't bad, but if it is drug related and I have options there is no reason to even take a risk.  I do have a "second opinion" doctor who is a nurse practitioner that treats lots of HIV patients.  I've been very impressed with her expertise and I will be calling her office in the morning to get her input.  Then I'll go from there.

Thanks so much for the support and advice.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline newt

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #15 on: April 23, 2007, 03:00:09 AM »
Mr B

In your John Hopkins you mention that the study you're in is A5202: First Treatment for HIV Infection (eg see here and here for study summaries)

This study is essentially to compare in a rigorous way how Sustiva + Epzicom or Truvada compares to Reyataz + Epzicom or Truvada as first-line therapy.  It is comparing four groups: Sustiva + Epzicom, Sustiva + Truvada, boosted Reyataz + Epzicom, boosted Reyetaz + Truvada.

I note that the study, a post-marketing study, uses a placebo+real nuke pair in each arm , but that real Truvada is an option with either Sustiva or Reyataz.  So why hasn't the doc just switched you to the real Truvada group? ddI+3TC is without the study protocol.  Now you are on ddI+3TC you are not part of the core study group I would think.  The reason to keep you in on ddI etc is for overall comparison of the effectiveness of Sustiva, and we know this works. So this wait-and-see-stay-in-the-study talk is a bit odd.

Your contribution to the integrity of the study group (by staying on a Sustiva based combo for the duration) should not be at the expense of your own health (ie continuing PN/denial of Truvada). 

This study wouldn't have got approved in England without an option to switch groups by reason of side effects.

hmmm...

"The object is to be a well patient, not a good patient"

Offline Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #16 on: April 23, 2007, 09:33:47 AM »
Newt,

My original thought a year ago was excactly what you are saying.  Just switch arms of the study.  (One year ago today I was sitting in the studies clinic complaining of leg pain--we did the wait and see thing at that time and within 3 days the pain was unbearable--so the meds were stopped after only 17 days.  It was blamed on the abacavir, although in retrospect, maybe not).  Anyway, my first thought was just simply switch arms and use the Truvada.  That made sense to me.  But I was told that since it was randomized, switching arms wasn't allowed since that would make it no longer random.  I didn't press the issue at that time.  Apparently the study has all sorts of protocols for a variety of "instances" that might arise.  For some reason, there are a number of drugs listed that can be substituted in the study that the study will provice.  ddI is one of those drugs.  Your doctor can also substitute other drugs at your expense.  None of that makes a lot of sense to me.  It seems that once you move away from anything in one of the 4 arms, the data you contribute is contaminated.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline newt

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #17 on: April 23, 2007, 09:55:11 AM »
I have nothing to add..

..cept if those study people were in their office with me they would need to go to the bar after to drink their stupidity into the ground

..if there was community review of the protocol then the people concerned would need a drink too.

The analysis will be on an intent-to-treat (counting everyone) basis, so dropping out/switching groups unblinded contributes as much to the real world understanding of which is the best first-line combo as staying in.

Good luck sorting it all out.

- matt
« Last Edit: April 23, 2007, 09:59:50 AM by newt »
"The object is to be a well patient, not a good patient"

Offline Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #18 on: April 23, 2007, 03:44:16 PM »
Thanks Matt!  I appreciate your candidness and insight.  All of my information so far has been from the studies nurse.  I know she isn't the expert.  I've not heard anything personally from the doctor yet.  It may be the he has a totally different approach.  I do understand wanting to have some sort of confidence that the symptoms are not just some fluke or caused by something else.  I know that even I go back and forth wondering if anything really is going on.  I can't really say that what I"m experiencing right now is painful.  It is just odd.  I don't have any issues at night.  But as the day goes on my feet seem to feel hotter.  I'm 200 miles away from the doctor so it isn't like I can just "stop by" for a chat.  If I'm not comfortable with the way things move this week then I will definately look at my other options.  The main one being just getting out of the study.

Thanks again!
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline allanq

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #19 on: April 23, 2007, 04:08:17 PM »
David,
It's tough being so far away from your doctor. I suggest that you ask him if it's OK to contact him by e-mail when you have a question. My doctor is only five miles away, but I do occasionally e-mail him, and he responds very promptly.

I can understand that many doctors would not want to deal with e-mails from patients, since this has the potential of becoming a very time-consuming taskr. However, given that you're so far away from your doctor, perhaps he would be willing to do this for you.

I hope you have a backup doctor that's closer to you. If you have a situation that needs prompt attention, I hate to think that you'd have to drive 200 miles, particularly if you're not feeling well.

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 Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #20 on: April 23, 2007, 08:17:46 PM »
Allan,
I'm in a unique situation.  I do have a house in St. Louis, but I work 200 miles south of St. Louis and rent a place here during the week.  Right now the studies nurses are keeping the doctor informed about the situation but I've not had direct contact with him.  Today I thought that things were getting better and then tonight my feet have been really sore and burning.  I just received email from the studies nurse that the doctor is going to review the study protocol and determine a next step. I'm supposed to report to them the grade of pain. Well, that's a difficult question. I think I'm pretty pain tolerant.  In the mornings I have virtually no pain.  And a 1-10 scale most of the time this is at most a 1.  But this evening the soles of my feet have been sore again and aching and I'd say it was maybe a 2-3.  So I'll email the studies nurse later tonight and then go from there.  I do have a second doctor that isnt' connected with the study but she is in St. Louis too.  I have a doctor near where I work for just regular stuff, but her HIV knowledge is minimal.

The whole thing is frustrating.  On  the one hand I see enough evidence that this could very well be mild PN.  But before dropping ddI I'd like to have a confidence that that is the cause.  And I'm not sure you can have that confidence.  Oh well....   I'm just frustrated again....
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #21 on: April 25, 2007, 04:02:14 PM »
I got a call back from my "second opinion" doctor today.  She basically said it could be PN but that her recommendation was to just wait another couple of weeks and see what happens.  She said that there wasn't anything crucial about taking immediate action.  The studies nurse is working with the studies doctor to "review" the study protocol.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline capemann

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #22 on: July 17, 2007, 02:26:25 PM »
GET OFF DDI AS SOON AS POSSIBLE! DONT WAIT FOR SOMEONE TO TELL YOU TO BECAUSE THEY WONT. THERE YOUR FEET SO TAKE CHARGE OF YOUR HEALTH AND GET OFF OF IT. NO ONE SHOULD BE ON DDI ANY LONGER, NOW THAT WE KNOW IT CAUSE'S SERIOUS SIDE EFFECTS.  IF YOUR LUCKY THE PERPHERIAL  NERUOPATHY WILL GO AWAY, MINE DID BUT RECENTLY CAN BACK SEVERAL YEARS AFTER I STOPPED TAKING THE DRUG.

Offline Smoothstone

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #23 on: July 17, 2007, 03:39:37 PM »
DDI is a known causer of peripheral neuropathy. I was on it too long. I thought I could tough it out, that I would adapt, that it would get better. IT GETS WORSE OVER TIME. You are getting clues about the nerve damage that is happening. My discomfort  wasn't constant. The discomfort varied which got me confused, but overtime, when it was noticeable it was getting increasingly worse. Back then we had limited choices and we had a desparation to endure horrific side effects. Many options today. There are better drugs. I consider DDI obsolete because of this known horrific side effects.  Too bad the docs and nurses don't experience the clues, the tingling, pain, like when your feet go to sleep...and the worsening overtime.

There is a way to stop. Check with your doc on that. I stopped all my drugs at the same time. Then after a washout period, restarted with substitutes. I am on the same combo since 1996. Before my current easy combo, I switched many times because of intolerable side effects.

The good news is that the damage doesn't have to be permanent....YET...but it will be if you don't stop the nerve destruction. Luckily you noticed the clues that your nerves are being damaged.

 

Offline Peter6836

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #24 on: July 18, 2007, 09:27:29 AM »
I am having a problem with PN myself. I am on atripla which is not known to cause PN. My ID says that it should not be a problem. But I have intense burning in the feet both feet and hands. Tingeling in the legs and arms. I feel like my extremeties have fallen asleep many times. The burning and numbness become extreme to the point that I will trip and fall down. I have problems sleeping and sometimes moving at all.
I know that HIV itself can cause neuropathy. By my CD4's are in the 400's and my viral load is in the 800's. My doctor tells me I should not be having problem. All I know is what I am experiencing. Any suggestions?

Offline Dragonette

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #25 on: July 18, 2007, 09:56:16 AM »
please help me guys. I am having the same problems as Blixer described, for many months now. also, once in a while my mouth, lips and tongue, fall asleep, as well as other parts, the pains, the itches, waking up from shattered glass being pushed in legs feeling. I am now on my 3rd regimen since 2 months ago - Viramune, Epivear & Viread. Before was Sustiva, Epivir and Viread, and before Combivir & Sustiva. Am undetectable and around 200-300 T cells. I just managed to swicth doctors but the meeting for a neurological consultation was set for 27/9! I don't know where to get the supplements, except the carnitive which is sold as water at the gym as a weight loss drink. is it too late to wait for the end of september? i am really freaking out over this. my nurse told me, "there is not much to do about neuropathy". I know I had something even before meds (pre diagnosis) but it is certainly much worse now.

PS if this was inappropriate hijacking of thteard, sorry about that. I didn't want to start a new one, since the stories are so similar. I am just wondering what are DDIs. are Viramune, Epivir or Viread a DDI?
« Last Edit: July 18, 2007, 11:12:16 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Peter6836

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #26 on: July 18, 2007, 11:36:46 AM »
Ditto what Dragontette said about hijacking, I did not intend to do that either.
Peter

Offline pozattitude

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #27 on: July 18, 2007, 06:44:48 PM »
Videx is DDI, I've been on this for 10yrs and just recently I found out about its PN side effects. >:(
Thank goodness I have an awesome doctor now, we are going to change my meds and hope that my nerves are not destroyed.

Rich
(who feels like he is walking on fire at least a couple of time a day)  :(
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Blixer

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #28 on: July 19, 2007, 12:04:03 AM »
Don't worry about hijacking the thread... this thread is about PN... so in my opinion, anything along those lines fits here.

The issues I had when I started this thread have subsided. I'm always cautious and if they return I'll the the first one to be back at my doctor's office saying it is time to do something.  My issues were relatively minor.  They scared me a bit, but they did go away in a couple of weeks.  Both my ID doctor and my regular doctor (who is certified in HIV) are very cautious, but they also don't want to change things anytime you don't have to.

Just a couple of comments...  When I first started meds I had horrible leg pain...  and I was not on DDI then.  I've talked to my doctor extensively about DDI and the PN issues.  He says that it is something to watch, but that the real concern is D4T and particularly D4T with DDI.

As was already mentioned, HIV itself is also known to cause PN and I'm told that it can happen no matter what the CD4 count is.  Some people are just proned to it.  In addition, if you have what seems to be PN have you been checked for diabetes.  That is known to be a big cause of PN.

As a side note...  some recent studies have shown that Sustiva, Epivir, and Videx EC are a very good combo for controlling HIV and allowing CD4s to recover.  Again, there are often risks to all meds.  Some people react differently.  It is wise to know as much as we can and to be very cautious.  And to make sure that we communicate our concerns to our doctors.  It's our health after all. 

Anyway, just some thoughts...

David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline koksi

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #29 on: July 21, 2007, 07:07:37 PM »
Thanks for this thread.  Does PN ever manifest as odd feeling on the scalp?  I have been experiencing some strange sensations on the sides of my head in the last several weeks, and it occurs to me after scanning this thread that perhaps that the scalp sensation could be related to minor feeling of RLS in legs and forearms.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline egello

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #30 on: July 30, 2007, 03:36:12 AM »
Newt,,,

so are you saying that my current combo is PN friendly? if you do, they also say that my current combo is also lipoatrophy as well, but since starting the treatment, i have been getting PN on my feet and calf area as well as abnormal fat accumulation on my tummy area.

do you possibly think it might be Norvir?

Also, does PN have anything to do with erectile dysfunction?


Thanks in advance...


« Last Edit: July 30, 2007, 03:41:33 AM by egello »
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline pozredbear

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #31 on: August 01, 2007, 10:30:22 PM »
have you tried Lyrica? it has helped me with a spot on my leg i had like that.

Offline egello

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Re: Perpherial Neruopathy or am I worrying over nothing?
« Reply #32 on: August 02, 2007, 12:41:48 AM »
i complained to my doctor about PN and he decided to give me a Neuropathy test to see how bad it is. He also thinks that PN that might be affecting my ED.
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

 


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