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Author Topic: Not a good sign  (Read 4777 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Not a good sign
« on: June 21, 2010, 06:47:39 PM »
I was at the doctor's office today to ask about someone and he told me my most recent labwork as back.

Then he got "that" look on his face and said he didn't want to bother me today, but that we would talk about the results tomorrow during my regular every-six-month check up.

 ??? :-[

I hate it when this happens. It is probably the lipids again. I was naughty and fell of the wagon and ate some red meat recently.

Oh bother.

HUGS,

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

Offline denb45

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Re: Not a good sign
« Reply #1 on: June 21, 2010, 07:00:06 PM »
It may not be something bad, might be something good, Mark I to struggle with up & down lipids as well, but, my Doc says it my NORVIR & APTIVUS, but, I really have very little options in regard to changing PIs   my current diet isn't all that bad for my age, I eat lots of Fish & Skinless Chicken, and maybe some Red-Meat every now & then (it won't kill you in moderation) with a very colorful array of Fresh Fruits & Cooked Veggies almost everyday  ;D
« Last Edit: June 21, 2010, 07:08:56 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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Re: Not a good sign
« Reply #2 on: June 21, 2010, 09:17:17 PM »
It may not be something bad, might be something good, Mark I to struggle with up & down lipids as well, but, my Doc says it my NORVIR & APTIVUS, but, I really have very little options in regard to changing PIs   my current diet isn't all that bad for my age, I eat lots of Fish & Skinless Chicken, and maybe some Red-Meat every now & then (it won't kill you in moderation) with a very colorful array of Fresh Fruits & Cooked Veggies almost everyday  ;D

Well, I usually do as well, and I usually throw in two to three vegetarian dinners during the week on top of the fish I consume. I also eat some chicken and turkey breast once in a while along with tofu and an assortment of bean dishes.

I was doing well after I switched to Isentress/Truvada.

I will find out more tomorrow.

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

Offline Nashvegas

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Re: Not a good sign
« Reply #3 on: June 21, 2010, 10:21:09 PM »
You know, I really wish doctors wouldn't pull this kind of stunt.  lol  You'll probably spend the next day worrying about something that doesn't need to be worried about.  I just hope it's better than you think. 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline mewithu

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Re: Not a good sign
« Reply #4 on: June 21, 2010, 10:25:36 PM »
If you can stand to take the fish oil tabs, Take them ,there supposed to help with that.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline aztecan

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Re: Not a good sign
« Reply #5 on: June 21, 2010, 11:48:40 PM »
If you can stand to take the fish oil tabs, Take them ,there supposed to help with that.

I take 5 of the 1,200 mg gel caps of fish oil each day, That was the limit the doctor said was safe.

I also take 2,400 mgs of red yeast rice, which is supposed to help. and a 500 mg Niaspan tablet, which is time-released niacin which also is supposed to help.

HUGS,

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

Offline denb45

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Re: Not a good sign
« Reply #6 on: June 22, 2010, 09:32:05 AM »


MARK, that sure couldn't hurt...I take 4 of the 1,000 mg gel caps of fish oil each day...now If I can get a handle on this Nassau, Chest-pains, and this annoying heart beating sound in my ear every morning when I wake up, things would be perfect for me  ??? my Doctor thinks it's nothing but my old panic attacks coming back to get me AGAIN  ::) but the funny thing is......when I feel that way in the morning, I take a TRICOR, QUINAPRIL, and a baby 81mg aspirin, then in about 20 min or so, I feel a lot better, I'll do ANYTHING rather than grab the BENZOS  :(
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

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Re: Not a good sign
« Reply #7 on: June 22, 2010, 05:45:06 PM »
Mark, I'm waiting to hear what the doctor had to say today.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: Not a good sign
« Reply #8 on: June 22, 2010, 06:56:21 PM »
Mark I'm hoping to hear a good report back from you , got my fingers crossed .

I'm pretty much in the same boat lipid wise . Unlike you I have yet to learn my lession and eat all the wrong foods all the time . My next doctor visit will be about this I'm sure because of my high lipids and blood sugar levels lately . My doctor has told me point blank HIV is not going to kill me ... its going to be cigarettes and soul food .

Offline denb45

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Re: Not a good sign
« Reply #9 on: June 22, 2010, 07:25:15 PM »
My doctor has told me point blank HIV is not going to kill me ... its going to be cigarettes and soul food .
jg1962....your my kinda man..... cigarettes and soul food  ;D hey you only live once......right   :D your gonna have to excuse me, I've been hitting the BENZOs all day long, today I really cannot take anymore BAD NEWS  ???
« Last Edit: June 22, 2010, 07:29:50 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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Re: Not a good sign
« Reply #10 on: June 23, 2010, 01:35:31 AM »
Well, I saw the doctor today and I was right, my cholesterol is up.

But that wasn't the problem the doctor wanted to talk to me about. Cholesterol is going on the "back burner" for now, he said.

My CPKs are up again. They were 747, up from 394 in September. Normal is 200 or less.

I guess that explains the aching legs I have been trying to ignore and the weakness in other muscles I also was trying to ignore.

(No, I didn't do a good job of ignoring them, otherwise I wouldn't have insisted on having my CPKs checked when I had my labs done.)

The doctor said since I am not taking any statins, which were the culprit in the past, it must be one of the other meds I take.

That's right folks, I am probably looking at a med change again. :'(

So, the doc checked and Truvada can cause myopathy. I did a bit of research and found Isentress may also cause myopathy, as can taking red yeast rice and niaspan at the same time, which I also do.

I am not sure what we will do.  It is odd that I went 11 years on the same regimen without too many problems, now I am burning through my options like I had dozens of alternatives at my command.

Many of the PIs are pretty much out because of the hyperlipidemia and mitochondrial damage I already have problems with. Atazanavir might have been a good option if I didn't need proton pump inhibitors.

Some of the nukes are kind of ruled out because of the potential for additional mitochondrial damage, neuropathy and/or myopathy. I have learned to live with the pain, etc., that I already have, but I don't relish any more.

Some of the non-nukes are out, i.e. Sustiva (Oh Dolly, not that again!), and Nevirapine, the latter because my CD4s are too high and there is a potential for liver problems as a result.

I wonder if Intelence might be an option?

What if I have to drop both Truvada and Isentress?

Perhaps Emtriva, Epivir (a golden oldie and one I have had good luck with), and maybe Intelence?

Oh, I don't know.

Next month is the 25th anniversary of my testing positive. But with Lisa, Ric and Tim passing away and now this, I really don't feel like it is much of a commemoration.

Oh, yeah, the other stuff.  My viral load is undetectable and my CD4s are down just a bit to 1,064.

Whoopee  :(

The doc said to keep well hydrated and if I notice the myopathy worsening, I am to stop my meds immediately.

He is going to do some more research to see what cocktail might best suit me.

Looks like I, like the others, won't be done in by the HIV, but by everything else.

Mark

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

Offline Jeff G

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Re: Not a good sign
« Reply #11 on: June 23, 2010, 01:49:20 AM »
Mark , I'm so sorry you are having to deal with this and the stress it brings . Its a tough road us old timers travel sometimes with the side effects of years of medicine and a bit of age thrown into the mix . I am wishing you all the best and would appreciate a update when you have one to share . These things though uncomfortable are treatable and that's at least good news .

Your posting about this has given me some insight about my wanting to change my combo and maybe a reason to stick with what I am on that's working .
« Last Edit: June 23, 2010, 01:53:17 AM by jg1962 »

Offline BT65

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Re: Not a good sign
« Reply #12 on: June 23, 2010, 04:25:47 AM »
Oh Mark, I'm sorry about that CPK problem again.  And I hope the doctor (and you) can come up with a good regimen that will cause the least problems for you.  Please let us know how it's going.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: Not a good sign
« Reply #13 on: June 23, 2010, 12:07:19 PM »
Well Mark, it doesn't sound like your number is up just yet, like many of us other LTS that are no longer with us  :'( my doctor tells me that HIV/AIDS will not kill me, but all of the other things that go along with it will, so that is what it's like to be a aging LTS ??? mark you gotten this far in the yrs, so whatever you do DON'T give up the ship, fight the good ole fight, all of the other LTS that have passed, would be PISSED-OFF if we didn't continue to do so  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: Not a good sign
« Reply #14 on: June 23, 2010, 12:37:06 PM »
Mark, my guess is that elevated CPK is from Isentress. And yes, I would assume Intelence would be an option with Truvada.  I would think it's important as far as future treatment to determine which current med is doing this, so halting both at the same time wouldn't tell you which it is.

I'm sorry that you're dealing with so many med issues :(
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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Re: Not a good sign
« Reply #15 on: June 23, 2010, 04:05:41 PM »
Oh Mark, not the dreaded CPK levels again....

YIKES.   I know you are just dying to try out MORE new drugs....

Emtriva is one that I take (with Viramune and Ziagen)  ....but epivir ....I'm leery of that one (lipo)

Sorry you are having these difficulties.   I am like you, "healthy" as far as HIV goes, but it's the other stuff that scares you.....

Let us know what's going on...  Keeping you in my thoughts & prayers, as always....

hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline bear60

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Re: Not a good sign
« Reply #16 on: June 23, 2010, 05:23:15 PM »
Hi Mark
Just want to give give you a hug. 
Joel
Poz Bear Type in Philadelphia

Offline aztecan

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Re: Not a good sign
« Reply #17 on: June 23, 2010, 10:45:55 PM »
Thnaks all.

I still don't know what I will do regarding meds.
 
But, as Dennis said, I'm not giving up the fight. But sometimes I get tired of the sucker punches.

HUGS,

Mark

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

Offline aztecan

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Re: Not a good sign
« Reply #18 on: June 25, 2010, 11:53:35 PM »
I met with my doctor today. He was on a conference call with an HIV specialist at University of New Mexico Hospital.

Interesting, this specialist said he never checks his patients' CPKs, or CKs, as they are often referred. My doctor replied, "Since we nearly killed him last year, I think it is a good idea to monitor his CKs,"

Hmmm, didn't know it was quite that serious.

After some discussion about my medical history, the specialist came up with a suggestion: Replace the Truvada with Selzentry and Fuzeon.

The loud thud caused by my jaw hitting the floor could undoubtedly have been heard in the next county. :o

Selzentry and Fuzeon?

My doctor, seeing the look on my face, just shook his head and said that wasn't a workable solution.

The bottom line is there are no real good choices. Mind you, if it were a question of resistance, I would consider whatever options were available, even Fuzeon.

But, that isn't the case. I have no resistance issues, at least of which I am aware. I still have never had a GART and don't intend to stop my meds just so I can have one.

My doctor did tell I could stop the red yeast rice I take for cholesterol. Apparently, there is some interaction between it and Niaspan that can elevate a person's CPKs, but it usually only shows up in people of Asian descent.  ???

The doctor's last comment to me today was that I might consider staying on the current regimen as long as I can live with the issues caused by the elevated CPKs.

The pain really isn't that bad. I notice it most when I am sitting, or driving, or laying down. It seems less noticeable when I am moving about.

As long as it doesn't cause any cardiac complications, which it can if it worsens, I'll get by.

I would love to say there is a solution to this problem. There doesn't seem to be one. It is not unlike the lipohypertrophy I live with. It is just something I may have to accept.

There is another person here in the same boat. Since there are only two of us here and I don't see others discussing it, I would guess it is a relatively rare situation.

Because of this, I don't hold out too much hope for medical breakthroughs.

I think this may be a case of hoping for the best, but planning for the worst.

HUGS,

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

Offline BT65

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Re: Not a good sign
« Reply #19 on: June 26, 2010, 05:03:54 AM »
Mark, I don't believe my doctor monitors CPK's either.  At least I've never seen them on the copies of the labs I get.  Once in awhile I get cramps to where my legs seize up, but not all that much.  I'm guessing, from what you said, that you get the cramping quite often. 

Well, I hope it doesn't get worse, and that you can put up with it.  Good luck and all that.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeffreyj

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Re: Not a good sign
« Reply #20 on: June 26, 2010, 07:15:52 AM »
Mark,
This is my 25Th anniversary month as well. I hope you can find something that works. Just FYI, I am on Rescriptor, isentress, Prezista and norvir. I have been on this combo with good results. Undetectable, and my t-4's went from the 300's a few years ago to 888 today.

best of luck dear friend.

Jeff( Who misses his neighbor to the south Moffie very much!)
Positive since 1985

Offline aztecan

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Re: Not a good sign
« Reply #21 on: June 26, 2010, 12:14:15 PM »
Mark, I don't believe my doctor monitors CPK's either.  At least I've never seen them on the copies of the labs I get.  Once in awhile I get cramps to where my legs seize up, but not all that much.  I'm guessing, from what you said, that you get the cramping quite often. 

Well, I hope it doesn't get worse, and that you can put up with it.  Good luck and all that.

Hey Betty,

Actually, the cramping is only occasional. It seems to hit when I least expect it - like in the middle of the night when it wakes me from a sound sleep.

The pain I experience is more like a general ache. A common experience might be if you have ever overdone it at the gym, or in the yard, or whatever, and you wake up the next day with sore muscles that ache and hurt to move.

That is about as close as I can come to the feeling. It is much like that. There also can be some weakness in the affected muscles, but that isn't too pronounced and I try to keep active to prevent that becoming a problem.

Jeff, thanks hon. Yep, I miss Tim as well. It seems we old timers are dwindling down.

HUGS,

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

Offline Jeff G

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Re: Not a good sign
« Reply #22 on: June 26, 2010, 12:26:35 PM »
If not for your CPK levels ( mine are within normal ) I could match you symptom for symptom . I have small nerve naurapathy and it can be quite painfull at times .

Are your doctors sure its the cpk that's responsible for your problems ? 

Offline leatherman

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Re: Not a good sign
« Reply #23 on: June 26, 2010, 01:03:13 PM »
The pain really isn't that bad. I notice it most when I am sitting, or driving, or laying down. It seems less noticeable when I am moving about.
oh lordy! ::) now I've learned something else - and got something else to bring up with my doctor as I'm reading up on this myopathy thingie and CPK levels (not something my docs have ever mentioned before). We're already trying to figure out what's going wrong with one shoulder (bursitis, arthritis, avascular neucrosis), what's checking one more thing? LOL Who knows? It could all be tied together.

Actually, the cramping is only occasional. It seems to hit when I least expect it - like in the middle of the night when it wakes me from a sound sleep.

The pain I experience is more like a general ache. A common experience might be if you have ever overdone it at the gym, or in the yard, or whatever, and you wake up the next day with sore muscles that ache and hurt to move.

That is about as close as I can come to the feeling. It is much like that. There also can be some weakness in the affected muscles, but that isn't too pronounced and I try to keep active to prevent that becoming a problem.
I've got a blog full of pictures of yard work that I do - but I don't tell people I'm doing it cause I hurt less while being active. I can even "ignore" the neuropathy in my feet, if I just keep moving and doing "stuff". Here I thought it was just aging or doing too much; but neither of those explains why I've ached and hurt this way since my 30's and throughout this past decade.
leatherman (aka mIkIE)


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