POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Solo_LTSurvivor on February 21, 2012, 06:22:52 pm
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Currently in addition to the meds I take daily for teh AIDS, I am also on shit to regulate the cholesterol and triglycerides because at one time a few years back they were sky-high alarming.
So now after a few years the levels have remained somewhat steady within the normal ranges, with occasional blips of elevation (nothing alarming, but just a little in the high range -- like 1 point: i.e., being 108 and the normal range is 100 - 107) but then at next labs, things are back to normal. I haven't seen the triglycerides that high since I was initially put on the pills - and I know it was because at that time I was eating a shitty diet chock full of sodium and all sorts of junk.
I was wondering if anyone who has been on these type of drugs in the past been successful in going off of them?
I have my quarterly labs coming up on Friday and I was seriously thinking about asking if I could go off the Crestor and Trilipix and just stay on Lovaza.
I re-adjusted my entire eating habits so it's not like I eat unhealthy any more and I'm honestly having feelings that I'm only on these drugs just because, if that makes any sense? You know, there was a need for them at one time but somehow the doc seems to think that it's a lifetime commitment now in order for things to remain under control and is hesitant about making any drastic changes, like me ceasing them altogether.
Any input would be appreciated.
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I dunno what advice I could really give you here, but, I've been on lipids for the last 12 yrs. they are somewhat high, but not anything I need to worry about ( so says my ID-Doctor)
but my nephrologist ( kidney doctor) keeps telling me that, if your ID Doc would just get rid of your Aptivus, you probably wouldn't need to be on any lipids, but my ID-doc disagrees with THIS due to me still being UD for the last 7 yrs.
it's actually kinda funny & sad as I'm still in the middle of this argument for the last 3 yrs. with both doctors, and I really don't think it will EVER be resolved, my ID-doc tells me that "I'm keeping you on these so you won't have a stroke or heart attack" and that you will be on these until I say other-wise"
the nephrologist isn't looking @ the big picture like I'm doing, all they see is your kidneys and nothing else, and I can tell you that they don't know everything....
and so the saga continues on ::)
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I was wondering if anyone who has been on these type of drugs in the past been successful in going off of them?
I would be curious to know the same thing myself. The nutritionist, at the VA, told me it was very possible (after closely examining my health records ) that I may be able to drop the Hydrochlorothiazide, , and possibly the Simvastatin, somewhere down the road.
I would really like to do that.
I only take the BP and the cholesterol medication , 5 days a week off two.
Ray
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Similar situation to you .I had my Statins dosage reduced due to side effect,s and they had helped bring the numbers down, that was fine , then we cut out one off them [ sorry cannot remember which ] and the numbers increased after three months so I was back on both.
Until reading your post I had assumed statins once started where for life , and now I am asking why??
mhtv
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I also tried for years to get my lipids under control. Different medications and such. Even after being on Pravastatin for 3 years, I didn't see much improvement. I radically changed my diet and achieved awesome numbers.
I discontinued the statin in December and haven't had a retest yet. I'll let you know if there was any change due to discontinuing the statin, but it'll be another month before that. I also phased out my metropolol. Now I'm just down to my AIDS meds.
Wolfie
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I was able to get off statins once my combo switched from Kaletra/trizivir to Isentress/Truvada. The Kaletra had the cholesterol through the roof. Six months off, it returned to normal.
So yes, I was able to get off, but was on them, obviously, because of other meds.
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So yes, I was able to get off, but was on them, obviously, because of other meds.
Yeah, this has been my problem for the last 12 yrs. it's my meds, it certainly isn't my diet
I'm only 188lbs and I eat right and all that, work out 4 to 5 times a week :-\
kidney doctors tells me to loose the Auptivs, and then you could get rid of the Tricor & Pravastatin
and maybe even the Quinapril...........but my ID-Doc isn't buying any of this :-\
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Thanks everybody for your advice and insight.
I think what I'm gonna do is mention that I want to go off the Crestor and Trilipix on Friday to see what type of reaction I get. Do the bloodwork/labs.
Pick up my new 'scripts, as I'm due for refills. Stop taking the Crestor and Trilipix, if I'm met with resistance -- and then when I go back for labs in 3 or so months, we'll see how the lipids are with just the Lovaza.
I'm all for lessening the number of pills I take daily -- and I really do not believe that once on statins, always on them - and periodically things need to be re-evaluated, just like if it were necessary to consider a new regimen of ARVs.
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I was on the BP medication Lotrel for over 5 years but was taken off of it as a precaution when I developed Bell's Palsy last year (after previously having it 30 years ago). The doctor said that although he had seen women over 60 mostly affected with the facial palsy when taking Lotrel, there were a few men. I am on Atenelol now.
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Fast update: I went in Friday morning and basically told the doc that I wanted to discontinue the Trilipix and Crestor, and only remain on the Lovaza - but phrased it in a semi question so she'd think that I was asking her advice. We have a great relationship and I know how to work her.
She had no problem with it, as I told her we'd see one another in a few months to follow up with the results from my labs (as I was having them done) so we'd see if taking only the Lovaza was keeping things in check.
Of course the fucking nurse blew my vein and had to keep jiggling the needle because I absolutely refused to let her stick me again.
It was awful: as she was filling up the 3rd of many vials my arm started puffing up at the site of the stick, but she managed to finish and as soon as she withdrew the needle, it was as if it never happened :o
Mark, I know you're having a time of it with your lipids so I feel shitty bitching and whining about trying to get off extra pills if I really don't have to take them :-[ My heart goes out to you.
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Mark, I know you're having a time of it with your lipids so I feel shitty bitching and whining about trying to get off extra pills if I really don't have to take them :-[ My heart goes out to you.
No reason to feel badly, these things happen.
I was thinking about the statins while reading this. I have tried several of them, all with the same result, very elevated CPKs with corresponding aching, cramping and weakness. The weakness is the worst. Had trouble walking and getting around. It even happened when I tried red yeast rice. Apparently, it contains a natural statin.
Anyway, not to veer off target here, keep us posted on how your next set of labs turns out. Hope you can ditch the statins, etc., permanently.
HUGS,
Mark
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Solo, you haven't mention if you take any 'good' lipids. I take capsules of flaxseed oil and burpless fish oil every day. I also eat some avocado most days (the fruit, not a dip with added fat).
I take pravastatin & Fenofibrate(for triglycerides). I'm curious, do you object to the pills or do you have to pay for them out of pocket? In MA ADAP pays for all of my prescription copayments, not limited to hiv drug copayments. My pension plan pays for my Medicare Part D (drug) plan. Hugs, Deiby
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Solo, you haven't mention if you take any 'good' lipids. I take capsules of flaxseed oil and burpless fish oil every day. I also eat some avocado most days (the fruit, not a dip with added fat).
I take pravastatin & Fenofibrate(for triglycerides). I'm curious, do you object to the pills or do you have to pay for them out of pocket? In MA ADAP pays for all of my prescription copayments, not limited to hiv drug copayments. My pension plan pays for my Medicare Part D (drug) plan. Hugs, Deiby
Lovaza = prescription only omega-3 (fish oil capsules)
To answer your question, I just have never been of the mindset that just because I had sky high lipids at one time means that I have to be on meds to control them for the rest of my life. Sure I am quite aware that the ARVs can cause levels to be elevated, but at the particular time that I had off the chart triglycerides, it was because I was eating a horrible diet. I modified my diet, exercise - and don't even think about eating bad foods - so I know that I'm doing all I can to keep things under control.
And yes, I have co-pays for each of the statins, as they are all brand names. I'm not worried about the cost, I just would like to lessen the number of pills that I take daily, especially if they are not necessary to continue to take them. My cholesterol and triglycerides haven't been anywhere near the point they were when I was started on them -- and the levels have been consistently normal for quite some time now. I just know that if I hadn't brought up the subject to my doc, I would still be taking them.
I go back the first week of April to get the results from the last labs, so I'll see what the levels are then and plan to keep them under close watch. And when the time comes, if I have to resume taking them, I will ;) And thanks for chiming in, Deiby.
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The results are in for the first set of labs after reducing pill regimen (for Philicia ;) )
Last labs collected in November (while still on Crestor, Trilipix and Lovaza)
Triglycerides: 166
Total Cholesterol: 165
HDL: 62
LDL: 70
CD4: 818/21% UD VL
Labs collected at end of Feb (Lovaza only)
Triglycerides: 55
Total Cholesterol: 140
HDL: 68
LDL: 61
CD4: 964/22% UD VL
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So, you're doing well on less medication; your chol & triglyceride levels are much better than mine, with all the meds I take for them. I hope that the levels stay normal. ;)
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The results are in for the first set of labs after reducing pill regimen (for Philicia ;) )
Last labs collected in November (while still on Crestor, Trilipix and Lovaza)
Triglycerides: 166
Total Cholesterol: 165
HDL: 62
LDL: 70
CD4: 818/21% UD VL
Labs collected at end of Feb (Lovaza only)
Triglycerides: 55
Total Cholesterol: 140
HDL: 68
LDL: 61
CD4: 964/22% UD VL
Well, those numbers are wonderful!
HUGS,
Mark