POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: kjonyou on June 22, 2008, 10:25:29 pm
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I have had wasting in the past mainly in the legs and arms, so I know what my body used to look like. My last round of drugs seemed to stop the progression of they effect. Unfortunatly, my doctor decided to swith me to raltegravir caliming it has very few side effects but in just a few weeks I have noticed dramtic fat loss in the leg and arms. Anyone else notice this? I have found a couple of sites that seem to list it as a "non serious" side effect but when you talk to the doctors, and other AIDS sites there seems to be this perfect drug praise about it and no mention of possable lipo.
Here is one site that seems to back up my theory
http://www.drugs.com/mtm/raltegravir.html
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1) wasting and lipo are separate issues
2) lipo is generally not "instant" but takes years to see the effect from an HIV medication, so it may be a drug you took some time ago
3) isentress was only approved 8 months ago -- I seriously doubt you're going to find out much about side effects like this (metabolic profile) from that drug at this time.
4) the link you provided says "less serious side effects" and all of those are mentioned for pretty much every HIV medication
5) if you are on isentress then I must assume you have a large resistance profile and don't have many options anyway. Even if you could prove what you are saying what exactly do you plan to switch to anyway?
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I know the onset of Lipo usually takes years, but when you have lived with it for that long you can see changes a lot quicker. I am not a doctor, so I can't prove anything, that was not my point here, I am just stating the facts as I have experienced them. Everyone body is different, some people are resistant to every med they try and are on salvage therapy while others have been pos for 20 years without any AIDS diagnosis, or symptoms.
Your assumption about my not having any other options is NOT correct. While I have been on several variations of meds, I was changed to this new combo because my new doctor wants to focus on quality of life, not just saving my life. My old meds had me at 535 t-cell with an undetectable viral load. I didn't have to change, in fact I kind of fought the idea because of the old school thinking that consisted of not trying any new meds until the old ones failed.
So I guess just to play devil's advocate, since your so sure this is unlikely, what facts do you have to support your opinion with regards to this drug? Lack of discosure is not a fact. Just because Lipo is not listed means nothing. Can you point to a study about this med and Lipo? Or are you referenceing vuage comments by the manufacture? In other words, if you dont know either way shouldnt you be nutural of this posability instead of making assumtions. You said yourself you doubt there are any side effects listed about the metabolic profile of this drug since its been out only 8 months.
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That's my point kjonyou -- you can't prove a negative, so asking me to prove that Isentress does not cause lipo is an absurd request. One would need to prove the reverse: that Isentress causes lipo. You have not done that, nor has anyone else.
What HIV meds have you been on previous to Isentress, and what is their lipo potential profile?
I believe most thinking on Isentress having a very low potential for causing lipo is based on early findings of the drug having a very favorable lipid profile:
http://www.thebodypro.com/content/treat/art38256.html
That write up is a bit old now, but I believe at the recent Sydney conference current data was presented that reinforces that with larger amounts of patients, for an extended 48 week period.
http://www.aidsmeds.com/articles/1667_12618.shtml
So, in short, I stand by my comments. If you're not on Isentress (like me) as a last resort then go ahead and switch. It's your life, not mine.
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I've got to agree with Philly. I have been on Isentress (with Truvada) since December, 2007. No adverse side effects that I can determine so far. The only possible one that I have noticed is an inability to fall asleep if I have taken it too close to bed time. But that could have been caused by a lot of things. I have remained undetectable and my T-Cells have stabilized in the 450 range. My lipid counts are marginally better, particularly cholesterol. Compared with Kaletra, it is like night and day for me. No runs, no high lipid counts. My quality of life has significantly improved under the Isentress regimen. Like you, I did not have to make the switch but took a chance to improve my quality of life. As to lipo, I already experience it (from over 20 years of AZT etc) so it is impossible to quantify what effect (detrimental or beneficial) Isentress has on this unfortunate side effect of being a long time survivor. Based on my experience with other drugs in the past, visually, I would not expect to see anything after such a short period of time. What you may be seeing in your own body may be the result of cellular damage manifesting from drugs you took a long time ago. It is difficult to say, without knowing what you have been on.
If you don't think that Isentress works for you, I suggest getting off it and trying something else, if possible. "Buyers remorse" is not helpful in a treatment context. Clearly, though, with anything new (as with Isentress) there won't be time tested data to rely on. However, in the final analysis, I think you should be in control of your treatment and not your doctor. When I switched to Isentress, my doc and I went over the pros and cons and we started with the premise of do no harm and not rock the boat if my current treatment was working. He did tell me (I believe) that if it didn't work out, I could go back on Kaletra (God forbid) because it didn't have the resistance issues associated with other drugs. In the end, though, weighing the promise of a relatively unknown drug was my risk and my decision to live with. Now there are even more possibilities from an alternative drug standpoint if Isentress fails. For me though, at least for the time being, I have no complaints about Isentress.
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Philly,
I know that you speak from a lot of experience, and so I am hesitant to jump in here, but I would just remind everyone that we don't know a lot about these drugs. I agree that it's unlikely that one would see a manifestation of lipo after only a few weeks on the drug, but really, who knows? Each person is different, and I wouldn't necessarily dismiss kjonyou's question out of hand.
I'd also note that what kjonyou considers "dramatic" fat loss might not be so dramatic to the rest of us. There is a degree of subjectivity here, so bear that in mind as well.
In my own experience, the only thing that I can say with certainty about lipo is that we certainly don't understand it.
John
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Thanks John,
I guess I should have said noticeable, not dramatic. To me of coarse any change is dramatic, but to others it is probably consided noticeable if I pointed it out. Hard to tell since my friends always say "its not so bad" so as to not hurt my feelings. But really, what do you say to someone with Cancer wearing a wig? Do you say Oh my god, you look like crap? or do you say, It looks good on you?
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Kjonyou,
I suspected that you didn't really mean "dramatic." Noticeable is more like it. I will say that my own experience is that lipo can progress fairly quickly. After I first realized that I had lipo, my partner went away for a week or so, and when he came back, he told me he could tell that my condition had gotten worse.
So if you're noticing something, I think you're probably experiencing some fat loss. Now, whether it's caused by the drug or not is really a different question. For all we know, this could be due to HIV itself. The point is that no one, including doctors, understands this condition. Anything anyone tells you about it is, at best, educated guesswork.
John
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Anything anyone tells you about it is, at best, educated guesswork.
John
Which includes you (though, I doubt yours is very "educated.").
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Hey kyonyou,
First, I am going to assume you are talking about lipoatrophy, not lipohypertrophy, since you alluded to loss of fat in your arms and legs.
You may well be experiencing lipoatrophy, but I think it is unlikely it is being caused by the Isentress.
While it is certainly possible Isentress could cause lipo, none of the meds thus far, even the most brutal ones, have caused lipoatrophy in such a short time period as a few weeks.
I took some of those brutal meds and have both lipoatrophy and lipohypertrophy. Mine took about seven or eight years to show up. The lipohypertrophy took even longer to show up, about a decade. But that was me.
It is more probable the loss of fat in your arms and legs is a leftover side effect from an earlier med or from the HIV itself, although the latter is quite rare.
It is also possible the Isentress is continuing to damage the mitochondria in your individual cells started by a previous meds.
Most people don't recover their lost physique.
If you feel Isentress is causing this problem for you, I would tell my doctor I wanted to switch. As you have stated, you didn't start the Isentress because of resistance or a viral breakthrough, but rather because your doctor's wish to put you on this new med.
Have your discussed this issue with your doctor? You may have mentioned that you have and I overlooked it. But if you haven't, that should be your first step.
Good luck and I hope you find a solution.
HUGS,
Mark
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Which includes you (though, I doubt yours is very "educated.").
Betty,
Not sure why you felt impelled to interject a snide comment. If you read what I wrote, you'd see that I don't claim to know the source of this person's problem.
As for being "educated" about lipo, I'm fairly educated as far as laymen go. But as I pointed out in my earlier post, no one really understands this condition, including doctors, so "education" has its limits.
Next time perhaps you'll have something constructive to contribute to the discussion.
John
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Bobino, with all due respect you should keep in mind that most of our members don't read your older postings so that they can adequately deduce that your lipo, which you claim is from HIV itself (as you are not on meds and never have been) falls so way far outside the bounds of scientific reason that perhaps you shouldn't be so insistent with folks who are looking for information.
In fact, when pressed you fully admitted that your doctors didn't wish to record your happenings in any study or journal, though they gratefully indulged your wishes to get facial fillers (though you had to go to Mexico for non-US approved fillers) and, when I inquired, you could only come up with one vague, anecdotal other person who believes that they too got lipo from non-med sources.
Yet you insist on entering into EVER lipo oriented thread to pimp your own experience. I mean, I do feel some empathy towards you as I do to anyone that suffers from lipo, but seeing as how your own situation is way, way, WAY outside what is to be expected might I suggest a slight bit of humility on your part might be in order? These people like kjonyou only get further confused with your well intentioned but over-the-top ramblings.
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. . . your lipo, which you claim is from HIV itself (as you are not on meds and never have been) falls so way far outside the bounds of scientific reason that perhaps you shouldn't be so insistent with folks who are looking for information.
As for being outside the bounds of scientific reason, please note the following comment by Dr. Ben Young, taken from thebody.com:
"Again, the common misconception is that it's only the drugs that are responsible. So therefore, if you just switch out the drugs, everything will get better. Again, we have seen lipodystrophy and lipoatrophy develop in patients who have never been on medication."
The full interview may be found here:
http://www.thebody.com/lipo/byoung.html
John
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John, Philly didn't say you don't have lipo. He just stated it's outside the norm. You seem to be quite defensive.
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I agree that it is outside the norm, and I have never contended otherwise. The quote from Dr. Young is simply intended to illustrate that there exists a group of HIV-positive, treatment-naive people who experience lipo.
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Yes, but my point all along is that -- say it's been seen in even FIVE people -- the manner in which you go into every lipo thread and state this it causes newly diagnosed people on the board to freak out and think it happens all the time. My point to you was to keep in mind the context of posting on a message board.
In fact, just during this recent discussion I've received a PM from a board member, who I won't name, that actually said you totally freaked him out unnecessarily when he first started reading on this board.
I swear, it's like you're on some sort of personal jihad or something, bobino.
ps: what Dr. Young states still doesn't rule out non-med lipo being some sort of genetic aberration or something else. I don't see where it pinpoints anything especially in YOUR specific case, as you were recently diagnosed -- he specifically discusses non-med lipo happening with advanced HIV disease. You've only been infected for 4 years, correct?
I still maintain that your situation is so utterly specific and a complete outlier that it isn't worth the alarmist tenor you employ in ALL of your posts, and I say that with all due respect knowing full well how whacked out lipo can make someone mentally -- been there myself.
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Kjonyou,
I would be interested to hear from you further in the months ahead on this issue. I will be starting on Isentress on Monday and while the early data on safety (particularly on lipids) looks good, there is still a lot we can't know since the drug is so new.
When dealing with the issue of lipo and drug therapy, I have always believed that we have to go with what we know. We do know the atrophy is linked to mitochondrial (sp?) destruction and that this is linked to a number of NRTIs. We also know that a number of the PI's are linked to metabolic changes (lipid elevations, hyperglycemia etc...). If you have the option to choose drugs that are less implicated in these issues, I believe you have a much better chance of avoiding serious lipo issues. It is true that HIV itself could play a role here, but the best thing any of us can do about that is to control the replication of the virus with effective treatment. There is a lot in this area we don't know.....but go with what you know!....
Just my two cents here.....Good luck! ;D