POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Assurbanipal on December 11, 2011, 08:26:06 pm
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I've been on three different regimens, with varying amounts of norvir booster -- the details are in my sig line. While I can't isolate out just changes in the norvir booster amount with 100% certainty, I think norvir is giving me the following problems:
- high cholesterol
- loose stools
- erectile dysfunction
All of these problems went away when I was on a regimen that didn't have norvir (or any other protease inhibitor). Unfortunately that regimen had other problems.
The problems were worse on my first regimen (which had a higher amount of Norvir) than they are now.
The first two problems are at least partially susceptible to changes in diet and increased aerobic exercise. I've made changes to eat a healthier diet with less meat and more high fibre fruits and vegetables. I've also been increasing the miles I put in on a stepper or running to where I'm now at 25-40 miles per week. I also take a statin and there are pills for ED. But my cholesterol, while lower than it was is still high ...So I need to do something more with pills or lifestyle to either manage the side effects or to try to get at the root cause. At this point I think the root cause is norvir and I'd like to see if I can get a good regimen without it.
Since I'm on Epzicom, one option would appear to be unboosted Reyataz -- I've read that it doesn't seem to have the cholesterol problems.
Another would be to try to get in on a cobicistat trial.
(Another option would be to halve the amount of Norvir by going to once a day Prezista, but my doctor is not convinced I'm a good candidate for that. There was no resistance test before I started drugs, and I've a history of frequent low level detectable results mixed in with undetectable levels. This makes her nervous, plus she remembers and keeps reminding me how frail I was when I started HAART after I got out of the hospital)
I'm leaning toward Reyataz -- it is available without a fuss. I think the doctor would prefer I stay on Prezista if there is a way to access cobicistat, because of Prezista's strength. At this point I'm getting another viral load test in January, and if the viral load remains close to or goes back to undetectable we will probably try one or the other.
Comments? other suggestions?
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I can't see any problems with your viral load results since on Prezista, if you're using the new viral load test that has a cut-off of 20 copies (ie Roche Taqman version 2) you are gonna see lots of results over this figure, sometimes up to 200 or so. I would think this reflects the (over-)senstivity and (newer but to my mind less useful) technology of the test not your true rate of viral replication.
You can do 2 x day Prezista with just 100mg of Norvir. Personally, I believe if you have no PI resistance then either staying on the Prezista (1 or 2 x day) with less Norvir or going for unboosted Reyataz at 400mg both seem viable. The advantage of Reyataz 1st is that if you get resistance (for some reason, can't see why you would if you take it regular) then it will leave Prezista as a workable option as the resistance profiles of the two drugs are different. Your doc has a point that Prezista is the stronger drug.
Cobicistat you can try, but personally I would not see it as likely to help on the cholesterol front, the small studies to date show similar rates of increase (and GI upsets etc).
More soluble fibre, guess you done that already...
Hope this helps.
- matt
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The advantage of Reyataz 1st is that if you get resistance (for some reason, can't see why you would if you take it regular) then it will leave Prezista as a workable option as the resistance profiles of the two drugs are different.
Thanks Matt
I always learn something new from your posts. I was aiming for reyataz but hadn't thought through this additional argument.
Assurbanipal
(potential banana)
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But (I ask, cos is intrigued) what is wrong with your latest viral load results?
- matt
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I've been on three different regimens, with varying amounts of norvir booster -- the details are in my sig line. While I can't isolate out just changes in the norvir booster amount with 100% certainty, I think norvir is giving me the following problems:
- high cholesterol
- loose stools
- erectile dysfunction
All of these problems went away when I was on a regimen that didn't have norvir (or any other protease inhibitor). Unfortunately that regimen had other problems.
The problems were worse on my first regimen (which had a higher amount of Norvir) than they are now.
The first two problems are at least partially susceptible to changes in diet and increased aerobic exercise. I've made changes to eat a healthier diet with less meat and more high fibre fruits and vegetables. I've also been increasing the miles I put in on a stepper or running to where I'm now at 25-40 miles per week. I also take a statin and there are pills for ED. But my cholesterol, while lower than it was is still high ...So I need to do something more with pills or lifestyle to either manage the side effects or to try to get at the root cause. At this point I think the root cause is norvir and I'd like to see if I can get a good regimen without it.
Since I'm on Epzicom, one option would appear to be unboosted Reyataz -- I've read that it doesn't seem to have the cholesterol problems.
I use unboosted reyataz (400mg) with epzicom, cholesterol is down, triglycerides fell from 195 to 145, lost weight, cd 4s up, no loose stools, undetectable. I cannoy be happier. For me a big improvement from norvir/truvada...
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But (I ask, cos is intrigued) what is wrong with your latest viral load results?
- matt
Today (and since Prezista) nothing -- she (the doc) and I both agree on that.
Since she is very cautious, she wants one more good set of results to persuade herself that things are ok on the viral load side before we switch to something that is better for cholesterol.
Does that make sense to me? Not entirely. I sometimes have difficulty connecting her caution to what I have read of the science (and what I recall from a flirtation with genetics when I was looking at grad programs years ago).
But since I am not personally quite as risk averse as perhaps I should be, I've purposely kept a doctor who is quite cautious (so cautious that she drives me nuts on occasion).
She is somewhat worried that there might be some underlying resistance that was potentially showing up in the earlier results when I was on Kaletra. She has used that as a reason not to try daily Prezista -- not sure that makes sense -- but I'd rather drop norvir than halve it anyway, so I've not argued too strongly.
It seems rather odd to me -- and not at all congruent with my own self image -- but the doctors who saw me during that year after I had pcp in the hospital are all quite protective. Objectively I know I must have looked pretty vulnerable back then (strangers were coming up to me on the street to ask if I needed help carrying my briefcase -- which had never happened before or since) but after the first few months I didn't feel particularly weak. It's really quite sweet; but occasionally frustrating.
I use unboosted reyataz (400mg) with epzicom, cholesterol is down, triglycerides fell from 195 to 145, lost weight, cd 4s up, no loose stools, undetectable. I cannoy be happier. For me a big improvement from norvir/truvada...
Yes, please -- I'd like some of that 8)
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Ah yes docs who are concerned and cautious, very good thing generally.
You are, my man, like many I believe, between a (small) rock and (modestly) hard place balancing metabolic effects v effective HIV treatment. As we all get older, me included probably, this will become more a current discussion.
My clinic sets a rather high bar on what is an acceptable blood cholesterol level for HIV-positive people, the reason being HIV-positive people tend to have higher blood cholesterol for some reason (and yer the smoking us 66% of HIV-positive folk do is a factor often...), and because cholesterol is just part of a clinical picture about risk of heart disease, and it's the overall risk of this that counts.
Even tho I have a cholesterol measurement (non-fasting) around 5.5-6.5, like somewhat high for my age (without HIV), all the other factors still give me a low risk of heart disease in the next 10 years, so my doc, and I guess me, we are happy.
If you haven't examined the more soluble fibre (including supplements) route, perhaps do this, when I remember and do this for a few months my total cholesterol drops to normal levels, when I forget, which is often, it rises to near 6 (or more). I am sure your cautious doc will be nervous, even if they don't say, about you doing an unboosted PI if you have possible underlying PI resistance (but personally I think unboosted atazanavir 400mg worth a go, you can always return to a boosted PI if need be).
- matt
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Well -- got the repeat blood test and I'm back to undetectable, so today is the day I go back to the doctor to see if I can talk her in to trading out prezista/norvir for reyataz 400 mg.
Given the data on cobicistat being similar to norvir for cholesterol, it doesn't really sound like a great option.
and I like the idea of going to once a day too. Every so often arranging the second meal with drugs is inconvenient.
So, fingers crossed...
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With luck, I just took my last dose of norvir.
I picked up the Reyataz at the pharmacy on the way home 8)
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Well, a rather dizzy, hard to focus day yesterday; couldn't seem to settle down to anything for more than a half hour. Didn't help that it was pulmonologist day and they wanted to see what happened when they made me hyperventilate.
A little itchy and feverish today, but feel more focused. No bright yellow banana look yet. (Given my somewhat ruddy complexion I'm worried I'll turn out a John-Boehner-on-a-really-bad-tan-day orange.)
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Still vaguely itchy, but no more dizziness.
and I think its working on eliminating at least two of the side effects... I'd forgotten that 5:30 AM feeling ;D
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Please keep us updated on how this goes. I'm on Truvada and Reyetaz 300 with Norvir 100 and I would love to be able to simplify down to just Truvada and Reyetaz. I had a little jaundice when I started the meds, but it didn't last long and certainly didn't make me look anything like Boehner! In fact, I just looked a slight bit tan. I'd say it went away within the first week or two. Hope this goes well for you bud!
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It's going well -- no yellowing or anything. Bathroom time is somewhat better too. And ... although maybe I should post this in that "tardy to the party" thread instead -- the erectile dysfunction problem is fixed! I'm still 55, but... hurray
Just hoping the blood work comes out ok.
As a note, though, I don't think the studies show that a truvada/reyataz combo would work without norvir. Truvada reduces the amount of circulating reyataz and so you need the norvir booster -- epzicom doesn't.
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Ohh bummer. Is Epzicom the same stuff that's in Atripla that has all the psych side effects?
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Ohh bummer. Is Epzicom the same stuff that's in Atripla that has all the psych side effects?
No that is sustiva AKA efavirenz.
Epzicom is an alternative to Truvada (2 drug combo -- same drug classes, just different drugs). Some people have an allergic reaction to Epzicom, but there is a genetic test that can tell most of those who will have a reaction.
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Oh yeah, my doctor ran that test but the stupid lab lost the blood sample! And I've been doing well on Truvada so I guess he decided not to try testing for the thingy again. Someday probably.
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The results are in from my 6 week tests after moving to (unboosted) Reyataz / Epzicom. They are great.
Viral load undetectable, tcells at a high (since we started measuring) of 788 and every cholesterol measure has dropped significantly and is now well into the normal range except for HDL (the "good" kind which remains at a high level protective against heart risk)!
On the down side, my blood sugar is now slightly above normal -- guess I will need to work on that. If these results continue at 12 weeks, perhaps I will talk to the doctor about dropping the statin, which could help. In the interim I am dropping half the fish oil dose (down to one capsule per day from two).
As far as new side effects go, there's been no noticeable yellowing -- the only new thing I've noticed is the need to belch for a rather alarmingly extended period several times a day. ( Some days I find it a bit funny, to be entirely truthful :D.)
Getting rid of the norvir has also helped somewhat with the stools and with erectile function -- things aren't perfect but they are noticeably improved.
So I'm very happy. I think I may keep this combo for a long time.
Cheers
Assurbanipal
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A final update -- I'm really happy with this combo of unboosted Reyataz and Epzicom. My cholesterol levels are now all in the low range, and the doctor who manages my cholesterol problems has told me that I can drop both the statin and the fish oil. The erectile problems are down to "natural aging". The only concern is that it does seem to raise my blood sugar levels a tad.
Its convenient too -- while it does need to be taken with food, it is only once a day, and it is pretty easy to find one mealtime a day that doesn't vary much.
As far as side effects, the only thing I've noticed is that alcohol seems to kick in a little faster if I go to the bar. And that's not all bad...
The only change I'm planning on making now is that I may ask my doctor to give me separate scrips for the two drugs that are in Epzicom -- one (epivir) has already gone generic in the US and the other (Ziagen) is poised to go generic soon. And swallowing two pills instead of one doesn't seem like a big hardship for the cost savings.
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I thought I'd post this update, in part, because I wanted to encourage people who are newly diagnosed to realize that you don't need to stick with the first set of drugs the doctor gives you if it has side effects that concern you.
Many, perhaps most, people have pretty manageable side effects on modern drugs after the first week or two. But if you are on Atripla and depressed or on Kaletra with outrageous diarrhea ask your doctor if there is something else you can change to.
There are so many drugs available today, that there are usually options you can change to that will be equally effective in stopping the virus, without stopping you.
You may have to push the doctor a little. It is human to develop favorite ways to deal with work problems and our human doctors tend to have favorite drugs. But it can be very worth much worth it.
Cheers
Assurbanipal