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Author Topic: Thinking about switching  (Read 1789 times)

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Offline Assurbanipal

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Thinking about switching
« on: January 30, 2008, 02:12:26 PM »
Just read the latest revised US treatment guidelines that were posted yesterday  ( http://aidsinfo.nih.gov/guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=7&ClassID=1  ) and noticed that I appear to be just on the wrong side of the line the way they define virologic failure.  Virologic failure is a VL not under 400 at 24 weeks and not under 50 at 48 weeks.  Looking at the data posted in my sig line I'm just grazing a VL of 50 at 72 weeks. Close but no cigar?

The Kaletra long term issues seem to be starting to mainfest as well -- I never had admirable cholesterol and blood sugar levels but they were OK until Kaletra.  Afterwards cholesterol went up dramatically  and I went on pravastatin and got the cholesterol under control but the good cholesterol is still a little low and the triglycerides a little high.  At the same weight as three years ago the pant sizes are all one up too -- although that might just be regular aging.  I managed the most obvious Kaletra sides with dietary changes (lots of fruit with fiber) but I am nevertheless  . . . quite regular thank you   :)  (and I read all the poop threads with empathy remembering those first few weeks)   I seem to have the Kaletra results too -- higher T cells and not as good a VL

On the other hand, the Sustiva (Stocrin) sides might not happen, and since I've gone part time I'd have a good chance to adjust to them.  And they seem to focus in areas where I've not had as many issues in the past that they'd exacerbate.  (But maybe I'm just envious of those dreams  :) )

So, when I see the doc next month I'm thinking of perhaps suggesting we switch out the Kaletra for Sustiva and if it works I could then eventually go on Atripla and maybe ditch the pravastatin.  I guess I'm now "treatment experienced" and so could try something more aggressive, but since things are almost working thought I'd stay close to the starting regimen.

But after a few months of reading I've developed enormous respect for the ability of the Board to offer helpful suggestions so thought I'd reach out and see if any of you had any advice for me.

Thanks
Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline minismom

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Re: Thinking about switching
« Reply #1 on: January 30, 2008, 08:26:36 PM »
Mini was on Susteva, Kaletra, and Zerit for 6yrs.  We took her off of susteva because of the side effects it has on the lipid system and tried Viramune, which doesn't have the effects.  Unfortunately, she had a bad allergic reaction and can't go back on the Viramune.  She's still on Kaletra and Zerit and we haven't added a 3rd med, yet, and may not.  Our next move will be to change her from Zerit (due to probable resistence and nasty side-effects) to Viread once I'm convinced her VL is holding steady and her liver is OK.

So, my 2-cents is to try Viramune instead of Susteva. 

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Assurbanipal

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Re: Thinking about switching
« Reply #2 on: January 30, 2008, 10:01:29 PM »
Hi Minismum

I enjoyed reading your and Mini's posts during my lurking phase.  You are a great advocate for her!

I've kind of shied away from looking at Viramune because my T-cell counts are back up now; its the viral load that's still higher than current treatment guidelines say is acceptable.  Most of the stuff I've found has said that men shouldn't start viramune with a CD4 count over 400 (I would have been eligible to start with it at first though!).  I hadn't seen info on bad lipid effects of Sustiva either, but there's a lot of info that Kaletra has the potential to generate cholesterol and raise blood sugar levels.  I guess I'd better go off and read the full Sustiva packet insert.

Thanks for your note ; I've got more research to do.

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline minismom

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  • Posts: 2,605
  • Quocumque jeceris stabit
Re: Thinking about switching
« Reply #3 on: January 30, 2008, 10:16:26 PM »
Mini was put on Viramune and her CD4 is over 1000 with her VL being u/d (43%).  I'll go back and read again, but I think the drug lessons here said that the CD4 "restriction" was for treatment niave people.  Don't quote me, though, I'm still trying to get used to all this :P.  You'd think, after all this time, I'd be an expert.  I'm embarrassed to say that I'm not.  But, there are plenty of folks here who are and one will surly come along (paging Newt and Gerry...)and be able to give you wonderful, meaningful advice.  There are also folks here who found Susteva side-effects very hard to tolerate and changed to Viramune.

The downside we have is that while Mini was having "starter" side-effects, she was an infant - under 2yrs old.  At that point, they were looked at as just "part of life" and never presented to us as side-effects.  Now I know better and we're trying desperately to do better for her and by her. 

Good luck with everything.  I know this can seem like a crazy maze with lots of twists and turns, and some deadends, around every corner.  But, you have found yourself among family.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline newt

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  • the one and original newt
Re: Thinking about switching
« Reply #4 on: January 31, 2008, 03:42:13 AM »
Hello

On the virological failure, it is good you read the guidelines but they are not hard and fast.

Firstly, "undetectable" means different things according to the test brand.  If it is the most common PCR test (Roche Amplicor) it will be 50 or less.  But it might be 75, 80 or 400 if its a different, less common one.

Secondly, the guidelines go on to say:

"Baseline HIV RNA may affect the time course of response, and some patients will take longer than others to suppress HIV RNA levels. The timing, pattern, and/or slope of HIV RNA decrease may predict ultimate virologic response."

You started with a very high viral load, and many people in this position do take a little longer to get to "undetectable". The pattern of viral load reduction is good.  The initial drop from 1M to 3,959 adequate and encouraging. The next 3 test results you give as "<400" which makes me think this was the lower limit of the test, and your viral load may have been below this already at that point.

Thirdly, your latest viral load is 50. What is the difference between 50 and 40 or 60 copies on viral load? Very good question.  Especially since the test has a degree of variance, meaning that it is at best a very good but slightly fuzzy piece of information.

Your CD4 response has been good and the drop in viral load impressive.  I personally wold not consider this close to virological failure unless your next two viral load tests are higher/going upwards.

- matt
« Last Edit: January 31, 2008, 08:26:57 AM by newt »
"The object is to be a well patient, not a good patient"

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Thinking about switching
« Reply #5 on: January 31, 2008, 07:05:16 AM »
Thank you Matt

Your comments on the trend line references and analysis are very helpful; I hadn't really thought through the implications of those sections before.  Thanks for patiently going through them.  I'll stop obsessing now.

Regards

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Thinking about switching
« Reply #6 on: March 28, 2008, 10:51:35 PM »
Little update, got results a week ago but have put off posting because I didn't like 'em much ;D  But ... met with the doc in February.  She DOES NOT like the idea of viramune for some reason.  And she said that she was hoping this line of treatment would last 10 years -- so we agreed to wait for another round of tests.

Fast forward to March and undetectable!  :)

Unfortunately all the rest of the labs were down hill from there.  Cd 4 dropped (but I expected that since they were really high the last time right after I broke my arm) but the percent dropped back down 3% too   ???  and the triglycerides jumped 100 points, the other cholesterol levels generally up; the pravachol and the 2 hours of cardio per week is not keeping the other cholesterol numbers down either.

And, inspired by a post from Philly about low testosterone levels leading to easier bone fractures (and never having broken ANYTHING until my arm this winter) I got that checked too -- it's at the very bottom of the normal range (249 ng/dL where normal is 241-847)  :(.

Of course, no one test and all that . . . maybe the cups of coffee or the funeral that day put the numbers off.  So, I've settled back into research mode, looking about for a cholesterol-friendly long term regimen to switch to now that I'm down to undetectable in case June continues the trend (but hoping that June's results will show up better   :) ). 

Well. . . waiting to post hasn't made this any less whiny . . . Sorry about that. . .but any and all suggestions for cholesterol friendly long term regimens for me to research gratefully accepted

Cheers

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

 


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