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Author Topic: How do you sort it all out?  (Read 4381 times)

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Offline ademas

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  • Posts: 1,152
How do you sort it all out?
« on: July 13, 2006, 12:58:53 PM »
The two big problems I have right now are my feet.

The most troublesome lately has been balance and weakness.  I've taken a couple of falls for no reason whatsoever.  I'm just walking along, or going up or down stairs, and my ankle or leg seems to just momentarily fail me, and down I go.  Nothing's twisted.  I haven't slipped.  There's not even pain, aside from a few scrapes and bruises as a result of falling.  And I'm being careful.  My days of taking two stairs-at-a-time are long behind me.  I use the handrail on the stairs, and I oftentimes support myself when I walk--a hand on the counter, or on the wall, etc.

I've had PN for a number of years, and I developed psoriatic arthritis a couple of years ago.

From what I'm reading, the balance and weakness thing can be associated with either PN or the arthritis, and can also be a side effect of several of the medications I'm on.

(I'm on Sustiva, Combivir, Gabapentin, Gemfibrozil, industrial strength ibuprofen, and a monthly injection of depo-testosterone.)

I mention those two conditions and my current med regimen because I really don't know where to go with this.  It's seriously affecting my daily life, far beyond my mobility.  It keeps me from doing many things I used to do without a thought, and it's really done a number on my overall sense of well-being, and how I veiw myself.  It's pretty depressing.

The pain and discomfort I can live with, because it's always been reasonably controlled with the ibuprofen or Aleve.

I suppose I should wrap this up with a question at some point, eh?

What would you do?  Would you start by discontinuing (or switching out) the non-HAART medicatioins one at a time to determine if one of these is the culprit?  And if that doesn't work, switch my HAART regimen?  Even at that, there seems to be a good chance that the balance and weakness are symptoms of the PN or arthrits, and have nothing to do with the meds.

My HIV/Infectious Disease doctor never seems too concerned about anything but my labs.  If I mention something he can throw a pill at, he will...but that's about it.  I've seen both a dermatologist and an RA (rheumetoid arthritis) specialist about the psoriatic arthritis, and neither want to put me on the meds that could really help, as they are immunosuppressants. 

Anyway...it's apparent to me that if something is going to be done, it's going to be me that has to take the initiative. 

Any suggestions?


Offline allopathicholistic

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Re: How do you sort it all out?
« Reply #1 on: July 13, 2006, 01:31:38 PM »
My HIV/Infectious Disease doctor never seems too concerned about anything but my labs.  If I mention something he can throw a pill at, he will...but that's about it. 

ughh, sorry to hear that Craig. my ID doctor is that way too- sort of. cool down to earth dude, but he has limitations.

i agree with what you said about (1) you being the person that will have to take the initiative and (2) there being a good chance this foot weakness thing might not be related to your HAART regimen at all. (but it could be)

so in answer to your subject line question, here's how *I* sort it all out. I speak only for myself. For labs etc I see my ID doctor -he's the allopathic doctor. For any side effects I see my holistic doctor. Allopathic. Holistic. (!) :D Both are Godsends, imho. So far it seems like a recipe for success. but back to the issue of throwing pills at symptoms--hey, it's great to pop a pill or 2 to make whatever go away  but for me, more often than not, i'll go out of my way to find a less invasive alternative (external, non-pill). personally i swallow enough pills (meaning HAART) so i don't wanna swallow even 1 more than necessary, no matter how small it might be. don't wanna medicine chest overflowing with Rx bottles ;D and like you said, there's the risk of immunosuppressants  :-\

be careful on those stairs,
hoping the best for you,
p.s. - when you had PN, what did you take to help it?
« Last Edit: July 13, 2006, 11:07:29 PM by allopathicholistic »

Offline Joel90069

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  • "Another turning point a fork stuck in the road."
Re: How do you sort it all out?
« Reply #2 on: July 13, 2006, 06:19:37 PM »
Why don't you start by paying one more visit to your doctor, telling him exactly what you wrote in your post (except for the negative things about him) and pin him down to coming up with a roadmap on how you're going to find out what's wrong and how to resolve it? If you don't get a satisfactory response make a committment to yourself to find another doctor. I have problems with my feet that are non HIV related, have had several operations and know what an effect the immobility can have on the quality of your life. It's very easy to get overwhelmed and allow control over your healthcare to slip away. You'd be surprised how much better you feel when you make those decisions and feel in charge again. There are plenty of doctors out there. You wouldn't hire a plumber who didn't listen to you. Why settle for something less in a health care professional?

Offline gerry

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  • Joined AM Feb 2003
Re: How do you sort it all out?
« Reply #3 on: July 14, 2006, 01:55:15 AM »
Have your docs ruled out myopathy from AZT (gemfibrozil may contribute to this as well)?  This condition can cause muscle aches and muscle weakness.  Checking CPK levels in the blood may cue them to this.  One other suggestion is to have your doc refer you to a neurologist for evaluation, including doing a work-up (nerve conduction studies/electromyography) to make sure what you are dealing with is peripheral neuropathy.

Offline ademas

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  • Posts: 1,152
Re: How do you sort it all out?
« Reply #4 on: July 14, 2006, 10:37:59 AM »
I'm getting some good stuff here...I knew I would.  Thanks, guys.

Alex--the gabapentin is for the PN.

I've always questioned the PN diagnosis, to be honest (and I've talked to several doctors about this over the years.)  It started about 2 years after I began medications in '94 (crixivan, azt, 3tc trial), and I found it odd that it was happening when I wasn't taking any of the meds that are the usual suspects, and my VL was undetectable.  My symptoms are classic to PN, though, and I have most of them.  I'll revisit this with my current doctor (and the next one...depending on how my appointment goes next week!)

(I was diagnosed in '94 with a CD4 of 79 and 4%, VL unknown...just for some additional background info.  My current CD4 is 400-600, % in the high-teens to low-twenties, VL 50-100 copies.  It's been in this range for a couple of years.)

Offline clarke

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  • Posts: 169
Re: How do you sort it all out?
« Reply #5 on: July 14, 2006, 02:30:03 PM »
My HIV/Infectious Disease doctor never seems too concerned about anything but my labs

Can you change MD's Craig?  I don't know how many are working in your clinic, but I do know you can change if the one you are seeing seems to "ignore" other issues.  We did that at our clinic, and the MD we see now is great for the both of us.  What she isn't sure about she tells us and refers us.

You may need to see a different MD about your symptoms.  Even if they might be med/HIV related, something is affecting your sense of balance, and it needs to be addressed before you really get hurt.

Offline pozniceguy

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  • Niceguy Dallas
Re: How do you sort it all out?
« Reply #6 on: July 14, 2006, 05:52:12 PM »
Craig , I have  roughly the same problem..bumping into walls , holding on to the hand rail etc.....I have been on the gabapentin for PN for more than 8 yrs.....I recently started noticing an extreme sensitivity to little things..when barefoot small bits on the carpet would feel like glass cuts...a knot in a thread in a sock would feel like a boulder...etc...to get to the point I am having a complete new neurological work up done...My HIV Dr...says he has seen this sort of reversal with long term use of the gabapentin along with the exaggerated side effect....

I don't believe the PN has gone away just some areas have become very sensitized and the medication is now producing exaggerated side effects.....I have to wait two more weeks to get my appointment with the neurologist.

remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas


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