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Author Topic: Interesting turn of events  (Read 4797 times)

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Offline aztecan

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  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Interesting turn of events
« on: May 24, 2011, 12:39:36 AM »
Had my blood drawn today. Guess what, my lipids are at a tolerable level.

The doctor said, "They're OK. I'd give you an A minus."

I don't have the exact numbers yet, I just glanced at them on the computer screen and don't remember them.

But, considering I can't take statins and am doing it all with Niaspan, fish oil, exercise and diet, I think I am doing "OK."

"I don't think we can squeeze any more out of you. We can live live with them," my doctor said.

Now, you may wonder how I managed to have my blood drawn at 9:30 a.m. and have the results and a consultation with the doctor at 3:30 p.m.

That's the bad news. You know the news isn't going to be good when you receive a personal phone call from the doctor who is asking you to drop by.  :(

It seems my CPKs have continued to climb. They haven't been normal, which would be below 200, for a while now. They are now up to 1,173,

At least I know where the muscle pain and weakness are coming from.

I am not on a statin, which did it the last time. So, we are looking at other causes.

Niaspan doesn't do it, neither does fish oil.

But, apparently, it has been seen in people taking Truvada, which I , of course, do take.

I was also reading the fact sheet on Isentress, and apparently elevated CPKs may also be an issue with it.

Guess it looks like another med switch :( :( :(

The doctor is going to contact a pharmacologist to see if she has any recommendations.

I have no resistance, as far as I know, to anything. However,  Sustiva and I don't get along, so that is out.

I could get checked to see whether Abacavir would work. But I would still need another nuke. Hmmm, I wonder which of the components of Truvada causes the CPK elevation? I can't seem to find any info that particular thing.

Perhaps, if need be, I could combine Abacavir, if I can take it, with either Emtriva or Viread, whichever it is that doesn't cause my problems. Or, maybe, combine Abacavir with Epivir, which I took for 13 years without any problems.

I am reticent to go back on Combivir. It is an outstanding drug, but the AZT component may have contributed to the body shape changes I have experienced.

Ditto the PIs, plus I just managed to get my lipids to at least a tolerable level, and PIs jack them up something fierce.

Hmmm, I could get the tropism test done to see if Maraviroc would work for me.

Then, there is Intelence and Edurant, the two more recent additions to the non-nuke category.

I guess we'll figure something out. I really don't want to switch, but I don't think I can go on too long with the muscle deterioration now taking place.

Oh Phooey.

HUGS,

Mark

« Last Edit: May 24, 2011, 12:51:52 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Jeffreyj

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Re: Interesting turn of events
« Reply #1 on: May 24, 2011, 03:21:57 AM »
Mark,
I am sorry you are still having problems with this. My Dr. firmly believes I got diabetes because of the meds. We have been on them so long. Sometimes I feel like a lab rat. I hope you can find a combo that works for you soon buddy. I'm pulling for you.
HUGS
Jeff
Positive since 1985

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Interesting turn of events
« Reply #2 on: May 24, 2011, 09:05:26 AM »
Thanks Jeff.

Regarding diabetes, that was good news. My fasting blood glucose was 86 and my hemoglobin A1C was 5.5, both of which are good.

So, there is that.

I just don't relish changing meds again. Isentress/Truvada has been so easy to take.

If memory serves, you don't have a resistance profile on record. Neither do I. Never had one done. They didn't have them in 1996 and I haven't had a measurable viral load since then.

(((SIGH)))

I know just what you mean about being a lab rat. You hang in there too.

HUGS,

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

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Interesting turn of events
« Reply #3 on: May 24, 2011, 10:10:58 AM »
Mark, I'm going to claim my moderator's privilege/immunity and post here in LTS because this is important. I would suggest you either post about this in the Treatments forum where Newt can reply, or PM him directly. His knowledge on combos is amazing. You may also try contacting Tim Horn via PM. This kind of thing is right up his alley too. Good luck, mate! :-*
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wolfter

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Re: Interesting turn of events
« Reply #4 on: May 24, 2011, 10:45:04 AM »
We've climbed so many mountains in the past that this will hopefully be but a small speed bump.  Take care and best wishes.

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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  • How am I doing Beren ?
Re: Interesting turn of events
« Reply #5 on: May 24, 2011, 10:59:24 AM »
Best of luck Mark . I follow your threads closely because of my sky high lipids , its a complicated tangle of medical problems and medications and side effects to treat the metabolic issues some of us poz people deal with . Its been a 10 year losing battle for me .   

I was having some success with the fish oil Lovasa but I cant take it any more due to abdominal pain . I am going to now check out Niaspan .

Offline RAB

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Re: Interesting turn of events
« Reply #6 on: May 24, 2011, 02:06:45 PM »
Well crap Mark.  If it isn't one dang thing it's another.  (Currently I'm anemic, doc isn't sure why that's happened).

I think Ann's suggestion about Newt and Tim Horn are a good one.

See you in Seattle.

RAB

Offline AlanBama

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Re: Interesting turn of events
« Reply #7 on: May 24, 2011, 02:08:05 PM »
Ann beat me to the punch; I was going to suggest for you to "page Newt or Tim Horn"

Hope you can get some answers honey; I know a med switch is not something you look forward to....

Thinking of you   :-*    :-*
"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 BT65

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Re: Interesting turn of events
« Reply #8 on: May 24, 2011, 05:03:25 PM »
Oh Mark, that sucks.  Just when you get a tolerable med combo, aye.  I hope you're able to get some answers on a friendly combo you'll be able to tolerate, without bad side effects.   :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline pozniceguy

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Re: Interesting turn of events
« Reply #9 on: May 24, 2011, 06:55:25 PM »
Hang in there Mark     you, like  so many of us, have survived through so many "side issues" that there has to be a good outcome  for this  one... consider yourself the pioneer for  this one.... I  a  sure there will be others..

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

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Interesting turn of events
« Reply #10 on: May 24, 2011, 07:22:31 PM »


Guess it looks like another med switch :( :( :(



I guess we'll figure something out. I really don't want to switch, but I don't think I can go on too long with the muscle deterioration now taking place.

Oh Phooey.

HUGS,

Mark




Mark,

Sorry to hear this Mark.  I certainly can understand how frustrating it all can be. Keep us updated on the next step.

Hang in there----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Theyer

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  • Posts: 2,514
  • Current ambition. Walk the Dog .
Re: Interesting turn of events
« Reply #11 on: May 25, 2011, 06:30:39 AM »
Dear Mark,

Bloody swings and roundabouts , I am sure that between you ,your Doc, Matt and Tim the bestest off outcomes will be found, I am a I think you  say  a complete dimwit when it comes to these things , relying  on my good Doc's advice and sticking a Pin in the list off suggestions while he is not looking.

Anyway lots off hugs to the great giver off hugs
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline CaptCarl

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Re: Interesting turn of events
« Reply #12 on: May 26, 2011, 04:34:14 AM »
Mark-

Sounds like your in the middle of a serious clusterfuck. I hope you can get it all sorted quickly. Looking forward to seeing you in Seattle, so you'd best do everything you're told. Or I'll sic Jan on you...

CaptCarl
The only thing I can do straight is shoot..

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: Interesting turn of events
« Reply #13 on: May 26, 2011, 10:33:23 AM »
Sorry for this temporary hijack, but I just wanted to say something:

Has anyone seen POZ's latest issue, with "31 Long Term Survivors of AIDS" ?  Sure, many of these are well-deserving of the notice (like our own Peter Staley) but others were 'questionable', at least in my mind.

When I think of GREATNESS in a long-term survivor, I think of Mark.   He has been dealing with this shit for a quarter of a century, but never been on disability!  He continues to work every day, helping others who have HIV/AIDS.   He has kept his sense of humor, he rarely complains, and he just DEALS with whatever comes his way.  He is a true HIV Hero.

Love to you, my friend.    :-*

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 MarcoPoz

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Re: Interesting turn of events
« Reply #14 on: May 26, 2011, 03:58:56 PM »
Mark,

Hang in there!  Yes--this looks like it may mean some adjustments, but you're definitely looking at things the right way--and with a good attitude.

Funny, I was just chastised on a national listserve for suggesting that the downplaying around ART side effects and the normal bumps and grinds of living with HIV, was perpetuating a false myth.  I was actually told by an 'expert' that people really don't get that many side effects anymore and our condition has become manageable.  Fuck them, eh?

Offline Jeffreyj

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Re: Interesting turn of events
« Reply #15 on: May 27, 2011, 01:31:29 AM »
Alan
I could not agree with you more. Mark is a hero in my book, And I have been an admirer for several years now. Mark is the real deal. Well said Alan. Best hijack ever!
Positive since 1985

Offline bear60

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Re: Interesting turn of events
« Reply #16 on: May 27, 2011, 11:03:10 AM »
Couldnt agree more...Mark is a hero.
Poz Bear Type in Philadelphia

Offline aztecan

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  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Interesting turn of events
« Reply #17 on: June 01, 2011, 11:26:09 PM »
Wow, thanks Alan, Jeff and Joel.  I pretty much don't know what to say.

I appreciate the sentiment, even if I really don't think of myself as a hero - just a stubborn old fart!  ;)

That said, I had my appointment yesterday. The doctor ordered the test to see whether I can take Abacavir, although he isn't sold on the idea.

We are both concerned about the history of cardiovasular disease in my family, my battle with high lipids and my history of having smoked.

But, the pharmacologist recommended it first thing.  Our Newt hit it on the head again, as he usually does.

So, we'll see.

One thing though, the doctor is reticent to take me off Raltegravir (Isentress). He thinks the jury is still out on the CPK side effects of Isentress and would like to take a wait-and-see approach.

I have to admit, before the switch to Isentress, my lipids really sucked. They straightened out nearly immediately after I switched. That is hard to ignore.

The doctor is going to present my case at a confab of doctors and pharmacologists that meets statewide each month via the wonders of technology.

So, right now, there isn't much to do except to be patient.

Oh, I did get my lab results.

The lipids were OK, as the doctor said, Not great, but OK

Triglycerides - 122    ;D

Overall cholesterol - 197 (its below 200, which puts it in the marginal range, but not really where I want it, which would be below 180.)  

HDL cholesterol - 36  (they would like it above 40. At least is is more than the 17 I had a few years ago).

LDL cholesterol - 137  (Seven points above the top of the range) :'(

Glucose - 86   ;D

CPKs - 1,173   >:(   (The range is supposed to be between 55 and 170)

Hemoglobin a1c - 5.3   ;D   (No sign of diabetes or such)

And, the doctor did check my kidneys, which is something Newt also had suggested but the doctor had already done it.

Kidneys area apparently functioning like the troopers they are. No sign of problems.

Oh, and of course the other stuff:

Viral load -  Undetectable at < 20

CD4 still OK - 1,162  - 40 %

So, I guess I will just hang tight for now.

HUGS,

Mark
« Last Edit: June 01, 2011, 11:38:43 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Interesting turn of events
« Reply #18 on: June 02, 2011, 06:38:07 AM »
That all in all is a relief, I hope it is for you too and you deserve all the plaudits you get Mark.
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

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Re: Interesting turn of events
« Reply #19 on: June 02, 2011, 11:24:51 AM »
So, right now, there isn't much to do except to be patient

I know that song:  be Patient, Patient !   And about the "stubborn" thing, honey if we weren't stubborn, we wouldn't be here.   I list as #1 on my "Long Term Survival Strategy" :    Bull-dog Obstinancy.   BDO


Take care my friend --

HUGS & KISSES, 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

 


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