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Author Topic: PN experiences  (Read 2609 times)

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Offline aztecan

  • Member
  • Posts: 5,504
  • 30 years positive, 58 years a pain in the butt
PN experiences
« on: September 22, 2008, 03:12:51 PM »
I am just wondering whether anyone has had experience with an issue that is plaguing me.

As some know, I have some degree of PN, probably the result of my years of taking AZT or Crixvan or both - or neither, who knows.

I also have problems with elevated CPKs as a result of statin use.

The statins are made necessary because of the hyperlipidemia caused by the HIV meds.

The CPKs may never return to normal, but I hope to be able to learn to live with thie effects they cause. My doctor said he has other patients who have this issue. There doesn't seem to be a way to reverse it once it gets to a certain point in some of us.

I don't take anything for the PN. I know there are some meds out there, Neurontin, for instance, but the pain isn't usually that bad.

I would rather learn to live with it rather than take more pills.

The problem is, I am having trouble telling the two apart. There are times I am not sure if it is the PN kicking my butt or the pain caused by the elevated CPKs

Does anyone else have this trouble?



« Last Edit: September 22, 2008, 07:08:50 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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  • Posts: 10,466
Re: PN experiences
« Reply #1 on: September 22, 2008, 06:56:54 PM »
Mark, as of yet I don't believe I have CPK issues (though I've been reading more about those and I've been taking a statin for a little over year).  I do, however, have major PN, which requires medication.  In particular the one you mentioned.  I take Neurontin, 800 mgs 3 x a day.  That's been the only thing I've found to control mine, which is mainly in my feet.  They're still numb much of the time, but at least the sharp shooting pains are minimal. 

One time I had run out of Neurontin and was waiting for my mail-order pharmacy to get the refill to me.  It was awful.  I couldn't keep my feet still at all and even banged them against the wall to try to subdue the pain/shockwaves.  I don't know where you're at with the PN pain wise, but sure you'll know when you've had enough.  Sorry I couldn't add more.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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  • Posts: 5,504
  • 30 years positive, 58 years a pain in the butt
Re: PN experiences
« Reply #2 on: September 22, 2008, 07:14:56 PM »
Hey Betty,

I get the shooting pains, but mostly in my toes and feet.

I thought the overall ache might be related to PN too, but maybe that is the result of the CPKs being up.

That pain, which more resembles a dull ache, like you would get a day after you exercise a muscle you hadn't exercised in a while, runs from the ankles to mid thigh. It used to just go to the middle of the calves, but it has spread a bit.

Since changing statins, I no longer get the aching in my arms or chest, just the legs, so that is an improvement.

But I thought the dull ache was associated with PN. Ever run into that?


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

Offline BT65

  • Member
  • Posts: 10,466
Re: PN experiences
« Reply #3 on: September 22, 2008, 07:16:49 PM »
No Mother Mark, I've never experienced that as part of the PN.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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  • Posts: 1,196
Re: PN experiences
« Reply #4 on: October 04, 2008, 03:59:09 AM »
Mark --

Sorry I can't speak to the CPK issue but like Betty I also do not have an overall ache with my PN.  Mine is a feeling similar to my feet being constantly asleep.  I'm lucky in that the pain levels aren't bad unless I've been out walking or exercising a lot.

My feet (and sometimes my hands) are usually extremely cold to the touch but I think that has more to do with anemia than my PN.   Neurontin didn't work well for me (although I think most people have good results with it)  So far, Lyrica is doing a better job for me with the PN.  Now, I have to work on the anemia.

Best of Luck,
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline rondrond

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  • Posts: 1,729
  • 22 years HIV+ yet a yard could be the death of me
Re: PN experiences
« Reply #5 on: October 04, 2008, 11:26:53 AM »
Hi Mark,

I don't know about CPK, isn't that caused by an injury to a muscle? or something like heavy stress to the heart.

I've never taken statins. But I do have PN  Feet are the worse, and have the same story as Betty and Andy, feet arre numb, but the Neurontin is helping with those horrible spasm of pain across the top of the foot and under the toes.

I can relate to wanting to know just what is the cause.
In my case I juggle DVT vs HIV. The doctor won't commit yet to a definite answer.

Sorry that you are having this problem.

"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Aug09 Diagnosed: COPD

Tcells 700

Offline aztecan

  • Member
  • Posts: 5,504
  • 30 years positive, 58 years a pain in the butt
Re: PN experiences
« Reply #6 on: October 04, 2008, 02:21:17 PM »
Hey Betty,

I understand what you mean about banging your feet into something to stop the shooting pain. My shooting pains come and go, but sometimes when it acts up I have been known to bang my feet against the walls, pound them with a rock, etc.

It doesn't do much good, or at least it doesn't for me.

Andy and Ron, I know the feeling you're talking about as well. my hands and feet feel numb much of the time. Now I have noticed my lips are feeling cold and numb much of the time.

The last time I heard of that was when people were still taking full-strength Norvir as part of a regimen. Since I only take 100 mgs twice a day, I don't think that is causing it.

I could be wrong though. I have been in the past.

Regarding the CPKs, Ron, you are right.  It is caused by muscle damage, including that caused by a heart attack.

In my case, it is a result of my taking both PIs and statins. They don't play well together, which is why there is a big precaution about taking statins in most of the PI warning labels.

On TV, they describe these  as "rare" side effects. Right. Not so rare for me.

I have a lab slip to check my lipids and CPKs. I should have had it done already, but I keep putting it off, hoping that the side effects might lessen.

We'll see what happens though. This will be the first labs done since I switched to Lescol, which is one of the newer statins, I think.

I may add Zetia back in to the mix depending on what the lab results say. Let's just hope the CPKs are down this time.


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


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