POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on August 03, 2011, 09:28:27 pm
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I am at a conference in Loveland, Colo., this week, but thought I would check in during a rare spare moment.
The doctor and I had a long chat the other day regarding my med switch. Since Abacavir is out of the picture, and after conferring with other docs, my doctor recommended staying the course.
There is sparce information about what living with elevated CPKs will do in the long run. I may be the test case.
The issue is there are no good choices to which to switch.
So, for the mean time, I am still on Truvada and Isentress.
Two more days of this boot camp, er, I mean conference.
I will check in with you all when I can.
HUGS,
Mark
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Thanks for the Update and dont work to hard .
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Thanks for the Update and dont work to hard .
And play real hard ;D
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This sucks, big time. Any of us LTS dreads hearing the words "no more good options", as far as treatment goes. So it seems you don't have much choice EXCEPT to stay the course.
I feel for you honey.....and we have folks in Living With complaining about taking their one pill a day, or that they just don't know if taking meds is "worth it"......as I've said before, I do better if I stick to this forum.
HUGS.
Alan
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Oh Mark, damn it. I really don't know what else to say. I totally agree with Alan, though, about those people complaining about going on meds, when they have all the options in the world left open. They'd really have a cow if they were in your place. I'll be thinking about you for sure.
I understand totally how you feel about being at that conference. I hate going to them also, and since we have the same profession, I can only empathize.
Keep healthy. :-*
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The dreaded "Stay the course" line. That is so fustrating!
Mark you are such an inspiration for me. I don't know how you keep up the schedual you do! You just keep plowing ahead and live your life despite so many hurdles thrown at you.
You have major street cred with me!
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Thanks for the update Mark. One foot in front of the other and all that....good luck.
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Take care Mark, try to enjoy boot camp
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Hi Mark,
I hope you are doing well. Are you still working? I sero-converted in 1992 and went on disability in '05, partly because of the stress of my job.
How elevated are your CPKs? According to WebMD, Statins can cause your CPK levels to be mildly elevated.
Also, according to my ID doc there is a new type of inhibitor in clinical trials that should be available within a year, at least in 'early release' for people who are running out of options. He took me off of Isentriss because I hadn't been on Prezista/Norvir yet and he wanted to hold the Isentriss in abeyance until I really needed it. He seems to know what he's talking about.
Hugs from Provincetown, Deiby
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I'm afraid statins effect on me was not particularly mild. From what the lab wrote, your CPK levels should be in the 200 or less range.
When I was taking statins, mine went as high as 28,000. That is when the doc took me off of them.
Now, they run in the 1,100 to 1,200 range. Still have some aching and weakness, but I am trying to ignore it.
I am trying to control the lipids with Niaspan, fish oil, a low fat, low cholesterol diet and exercise. It seems to work OK, but I have to keep after it.
Since I don't have any real ARV options to switch to, I am sticking with my current regimen, Truvada and Isentress.
I don't have any resistance issues, at least none I know about (never have had a GART done.)
My problems seem to erupt from side effects of either the virus, my meds, growing older or all of the above. ::)
I guess we just have to grin and bear it.
HUGS,
Mark
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Hey Mark,
I told my hiv doc about you.
She said that, out of 1000 patients treated in our hospital, there is not a single one with no ( good ) options left. These days there is always some option left.
I thought this would be some positive news for you.
xxx Hermie
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ooh yes ... red rice yeast seems to have tremendous effect on your cholesterol. Check it out.
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ooh yes ... red rice yeast seems to have tremendous effect on your cholesterol. Check it out.
Hey Hermie,
Thanks for asking your doctor about my saga. I have use red yeast rice and it does work on the lipids, but it also contains a natural statin, which caused my CPKs go to up again.
So, I had to lay off of it.
When I said no good options, I wasn't talking about controlling the virus. That is the easy part for me.
I was referring to the side effects they can cause. My doctor is leery of the PIs because I have a buffalo hump, horsecollar neck and abdominal VAT, which he fears would worsen if I were to go back on the PIs. Also, I have a history of hyperlipidemia, and hypertriglycidemia, so PIs can be problematic there as well.
I can take most nukes without much problem, but cannot take Ziagen (Abacavir), because I have that genetic sensitivity to it, so Ziagen is out.
O cannot take Sustiva. I have severe CNS side effects from it. I don't know about Edurant. It is still too new to know whether it will cause the same problems as Sustiva.
The list goes on , , ,
The bottom line is no matter what I switch to, I will have some sort of side effects.
So, at this time, the side effects I am having with the Truvada (since the problem predates my starting Isentress) is one that I have learned to live with. The muscle pain is tolerable for the most part and I try not to let it stop me from being active, etc.
It take 750 mgs of Naproxen for the joint pain, and I think it may also be helping to blunt the muscle pain too, except when I sit for too long.
Who knew living with HIV for more than a quarter century could be such an adventure!
HUGS,
Mark
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Sigh,
I know all too well..... has been 24 years for me.
Now it is clear to me what you meant.
The PI's were a killer for me as well. Luckely I am not allergic to Ziagen, so I could make a switch.
I hope something will come up for you Mark.
hugs
xxx Hermie
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Love the quarter of a century comment. Who'd have thunk it way back yonder? Beating the pavement with you, I'd have never guessed you had any joint issues. Except maybe finding the next beer joint ;D
Wolfie
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I'm in the very same boat as you Mark, I am still on Truvada and Isentress, but Doc still wants me to take the Truvada every-other-day, so after today's visit everything is still the same, same numbers and I'm still HIV1-non-det ;) she changed my 10mg Lipitor to 40mg Pravastatin said it was better ??? lipid panel wasn't that bad still 340, used to be 600 all this is kinda confusing to me, and way above my pay-grade :-[