Falling down, that burning feeling, and all around tingeling and numbness!

[Peter6836]

I have been experiencing neuropathy for a couple of months now. I went to my doctor when it first started to occur. He told me that Atripla did not normally have that side effect so we both decided to keep things as they were and to see what happens. Well this is getting worse. Some days I hobble around. I find it difficult to sleep. I have even dreamt of things smashing my legs as if in a vice. I am rather afraid of all of this. It is rather debilitating. I drag myself to work but I am worried that one day I wont be able to. My numbers have improved and I was thinking that I could live with my HIV guest. I thought that maybe I would get away without having to go though a regular daily effect of this disease. Well it does not look like it.
Peter

[newt]

So what if Atripla does not normally have this side effect, if these are your meds it is the most likely cause.  Hobbling ain't living.

Has your doc suggested an alternative to Atripla (or no...)?

- matt

[aztecan]

Hey Peter,

So what if Atripla does not normally have this side effect, if these are your meds it is the most likely cause.  Hobbling ain't living.

Has your doc suggested an alternative to Atripla (or no...)?

- matt

I'm with Newt. I know people who have experienced side effects from meds that weren't supposed to happen.

Time has come to address this before it get worse.

HUGS,

Mark

[BT65]

Must agree with Mark and Newt.  I've had neuropathy for years.  It started like 12 years ago from a lot of AZT.  I'm on Neurontin and that helps alot!  Maybe it would help you.  But please do check it out before it gets worse.

[Moffie65]

I have to tell you Peter, things with PN should not be put aside just because a doctor has said this is not connnected to this drug.  PN will not get much better over the years, and if left to have it's way with your nerves, you could end up in a wheelchair, like I did for many years.  I cannot stress to you how important it is to make sure the meds are not the reason, but this is not the easiest quest to travel.

I have now been living with severe PN since about 1996, and just now, I am entering a study to make an attempt to pass the new treatment of Capsaisin Patches to heal and neutralize the effects of PN.  I will be keeping a diary in the Research Forum if you would like to follow along.  J.R.E./Ray has already done this and his account is there, I recommend you read it.

Here is a link to my Blog on this subject;  http://blogs.poz.com/tim/archives/2006/02/one_day_long_ag.html

HIV can and does cause PN also, so I cannot offer too much hope with your situation, but if it is drug caused, then you should with haste, try to make your doctor realize this is no walk in the park.  Please feel free to read and print out my blog on this subject and let him/her read it and hopefully they will understand that this is not something to push aside until a future date.

I have also tried Neurontin, and many other Psycotropic drugs, but I now don't take anything, because of all the people who have died from the side effects of long term use of these drugs.  Also, I am way too much of a control freak to spend my life "under the influence" of these wonder drugs.  So, I push through the pain and do my life as I see fit and try not to overdo too often.  The pain in the feet, believe it or not, is something that can be overcome at some point, but it requires a huge amount of just mind over matter to cope daily.

 Love,

[BT65]

I have also tried Neurontin, and many other Psycotropic drugs, but I now don't take anything, because of all the people who have died from the side effects of long term use of these drugs.  Also, I am way too much of a control freak to spend my life "under the influence" of these wonder drugs./quote]

I also have diabetes, which causes the PN to be worse.  I haven't heard of anyone dying from long term use of Neurontin, but if there are studies, I sure would love to hear about them, as I do not want to die from taking Neurontin
.  As for "being under the influence," Neurontin doesn't cause me to act or feel f***ed up.  I ran out of it one time and ended up in the ER.  Also, I did not start taking the Neurontin until myself and the doc exhausted every other avenue. 
Peace-
Betty

[BT65]

Sorry about quoting myself!

[Moffie65]

Betty,

I will answer you here, though I trust Peter will not mind going into detail here.

First off, there are no studies showing death rates from the use of Neurontin, but suffice to say, I have been in HIV work long enough to see those who were using this drug, and did suffer heart failure.  One of the nasty things about the drugs we are 'scribed, is that seldom is any trace to the drug being done, due to the ties the doctors have to the drug companies.  My mother was on so much Neurontin for her diabetes, she couldn't even write any more..  This wasn't a nice side effect for someone who was a genius before drugs.  I helped her get off the stuff and they were able to give her something that helped but wasn't so dangerous.  Also, when she got off the stuff, she suffered much less pain, and didn't have to use nearly as much after that.  This was before, during and after the loss of one leg.

I have known more than a few HIV+s who also suffered heart attacks from the use of this drug.

Please Betty, use it with extreme caution.  Most doctors will not even know of these facts, due to their continuing paybacks from their intensive use from the manufacturers.  Remember, we are still only lab rats to the drug companies.  Can you spell Abbott?

Love,

P.S.  I highly recommend the use of the good old Green medicine here.  I still use it to great effect and the reduction of pain through it's use has helped me to walk without a cane anymore.  People here who have met me will be surprised by this, but I haven't used a cane since last year in Montreal, on our AIDSmeds Gathering, '06.

[BT65]

P.S.  I highly recommend the use of the good old Green medicine here.  I still use it to great effect and the reduction of pain through it's use has helped me to walk without a cane anymore.  People here who have met me will be surprised by this, but I haven't used a cane since last year in Montreal, on our AIDSmeds Gathering, '06.

Moffie:
     By the green medicine, I think you are referring to weed.  Correct me if I'm wrong.  I'm in recovery from addiction and I don't smoke pot anymore (actually, haven't in about 18 years, but if things ever got that bad, I probably would).
Peace-
Betty

[Peter6836]

Moffie makes a good point I do not like what I have read about the drugs that are being used to treat neuropathy. As for me this is spreading I feel it more and more every day. Sleeping is getting difficult and it continues to add to the fatigue. I find that I am dropping things, and I deal with the feelings all day. Not that it is a dibilitating pain, it is just another reminder of what is going on in my body. I will discuss it again with my doctor I continue to read up on the condition. I just want to continue working and getting around. I want quality of life.

[Bucko]

Peter-

Have you seen a Neurologist yet?

What I though was PN turned out to be symptoms of degenerative disc disease in my cervical spine. At times the pain was so acute that I required days in bed, and used a cane for almost six months.

As far as pain meds are concerned, I was on everything from Neurontin to Fentanol. I found the dosing required to alleviate the pain kept me befuddled and depressed. I currently maintain an active life by taking Ibuprofen which eats my guts but keeps me reasonably clear-headed.

Brent
(Who does not mean to slam anyone else's use of prescription pain meds as he understands how they work)

[fondeveau]

Bucko makes a good point.  All illness is not related to HIV or meds just because you're poz.  I worry quite a bit about whether my general practitioner might simply chalk something up to being HIV+related, rather than an independent illness.  For that reason, I discuss the same things with the ID Specialist, who indicates to me that he is in frequent contact with my general practitioner and provides the general practitioner with additional pointers regarding my healthcare.