POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: BM on November 20, 2009, 06:43:01 am
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I've noticed that I've all but lost the fat under my eyes (I have a handy twin to test these things on). My doctor says not to worry and that we should keep an eye on things, but I can't help worrying as I can only feel bone under my eyes and tops of cheeks. Is this the beginning of full facial lipoatrophy? Or could it be that it won't get any worse? I've always been thin, so if it's affecting the rest of my face, I can't say I've spotted it yet. Is there anything I can do to stop it progressing?
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How old are you?
Also like any of these subjects it's hard to tell in the absence of before and after pictures.
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Hi Miss P. I turned 30 in August.
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I see your cd4's were low when diagnosed and had PCP -- how do you know it's just weight loss from PCP as opposed to lipoatrophy caused from long term mitochondrial changes to your cellular structure. The meds you are on are not know to cause lipo. If it's simple weight loss you will gain this weight back over time and hence you may have little to worry about. Also many have deeper set eyes as they age into their 30's.
Many patients conflate the two separate issues of med-induced lipo with weight loss from an opportunistic infections such as PCP. I'd try to relax a little about this, though I will grant you it's very easy for your mind to play a trick on you.
Take care, BM (I keep thinking that means bowel movement) and best of luck.
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That helps. Thanks, Miss P. xx
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When I got my silicone treatment I ask the doc if he thought my thinning face was due to meds or age (I'm 53). He said it looked like meds (he's gay and has been treating side effects from meds for years so he's about as expert as you can get... done thousands of silicone treatments).
He said the "classic" pattern starts with thinning temples (which is exactly what I had first).
Next comes thinning cheeks with pronounced cheekbones. The thinning is especially characteristic in that it makes a V pattern from the corners of the eyes, down the cheeks, under the cheekbones. I didn't even notice the part of my face just from the inner corner of the eye to the top of the cheek, was sinking... until he filled it in with silicone. Wow.. what a difference just that little area made.
For me, now that I've decided to take the risk and use silicone, I'm not so worried anymore about lipoatrophy. Treatments are relatively affordable, long lasting, and can be done without anyone noticing.
Given that you're just 30 and had PCP, it sounds like you just need to put on weight... but as you get older, you might be one the look out for it. Even the so-called "good" meds are causing lipoatropy in some people (lucky me .. I take Sustiva, Epivir, Ziagen, but otherwise have all the risk factors).... just not to the extent that AZT and Zerit did.
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I am also on Reyetaz, and have noticed significant fat loss under my eyes. I am going to the doctor next week, and will ask about it. It has been bugging me a lot, to the point that I don't date or anything.
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I'm negative, I was infected twice in the last 3 years. I am loosing weight every where, can someone tell me what be going on?
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I'm negative, I was infected twice in the last 3 years. I am loosing weight every where, can someone tell me what be going on?
Wait, what? You are HIV negative?
What does it mean that you were "infected twice?"
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Candy, please clarify. Have you tested positive for HIV or have you had two risky incidents?
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I've been on Atripla for 4 months and have started noticing facial lipoatrophy. I didn't even realize it until i had three different friends come up to me within two weeks and say that my face looked thinner. Now I can see that my cheeks have deflated. I'm going to my doc tomorrow to switch treatments. The Sustiva in Atripla has been associated with lipoatrophy, which I had no idea until doing a ton of research this weekend. Damn!
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I've been on Atripla for 4 months and have started noticing facial lipoatrophy. I didn't even realize it until i had three different friends come up to me within two weeks and say that my face looked thinner. Now I can see that my cheeks have deflated. I'm going to my doc tomorrow to switch treatments. The Sustiva in Atripla has been associated with lipoatrophy, which I had no idea until doing a ton of research this weekend. Damn!
On 23 August 2020 you wrote (http://forums.poz.com/index.php?board=4.0): I've been poz for a little over a year now and I've noticed my weight drop ten pounds from 155 to 145 (I'm 5'8"). I haven't changed my diet or gym routine. I started Atripla about a month ago, but the weight was on it's way off before I started it. I asked my doctor and she's not worried about the weight loss at this point.
I've never heard of lipo developing in four months on this medication, as actual lipo is a slow process because it's a mitochondrial/cellular level issue and takes time to develop. Not to mention but you clearly stated that this issue started before you even began treatment with Atripla.
I'm also noticing the same weight loss issue (http://forums.poz.com/index.php?topic=35022.msg435880#msg435880) with the poster lmdo in a thread that you (spoon) also replied to.
Please take note that involuntary weight loss due to initial HIV infection is not the same as lipoatrophy. Simple weight loss, over time, can return -- lipo, as a cellular issue, does not return to original form. I'd hesitate to change HIV med regimens when doing a self-diagnosis, but I'll let your doctor decide that issue. If he let's you change meds it most definitely will be more along the lines of humoring you.
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error
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i know the difference between standard weight loss and a sinking in of my face. yes, the weight was lost before atripla started, but my face was fine. now my face is sunken in and i'm back up to 150 pounds which is close to my normal weight. i notice all over the boards that you take the "queen of the boards" approach and assume to know all. pause for a second before you correct everyone and consider the possibility that you don't know all. i almost didn't post at all to the boards after having read them over the last year and watched you and a couple of people terrorize everyone on here who you disagree with. these boards aren't just for you, they're for everyone facing these important issues. people shouldn't be scared to post on here for fear of your iron-fist approach to what you think is right. how about let other people communicate in peace? i'm not looking to start a flame war here with you, but people taking atripla deserve to know of the risks and don't need you strong-arming all the posts on the topic. lipoatrophy can be seen in as soon as 3 months. here are some links and quotes:
http://www.aidsmeds.com/articles/lipoatrophy_sustiva_kaletra_2021_13269.shtml
ED: Yeah, so there was this study called ACTG 5142 that was presented earlier this year where they did a head-to-head comparison, it was the first one, of those two first-line options using nucleosides, any one of a variety of them, with either efavirenz or lopinavir/ritanovir. And part of that study, and I think it illustrates how important it is to the investigators to define this issue, was to do DEXA scans to quantitate the amount of subcutaneous fat in the entire population of 750 patients for up to 2 years. And the surprise in that study was that people who received nukes with efavirenz had greater loss of subcutaneous fat…
PS: Efavirenz is Sustiva…
ED: Sustiva, and a higher frequency of what they defined as lipoatrophy than the people who received similar nukes with lopinavir and ritanovir.
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http://www.aidsmeds.com/articles/1667_11394.shtml
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i'm not finding the study on how quickly lipo can develop at this moment because i'm in the middle of my work day, but if it's necessary to get you to not hijack this thread, let me know and i'll find. it.
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from your link:
PS: So most patients who were started on the most common Sustiva regimen now, which would be the once-a-day Atripla, they probably have very little to worry about on the lipoatrophy front because of the nucleoside backbone that’s built in.
ED: I think that’s right. I think overall the risks are very low and the majority of people probably won’t suffer the consequences from that. And there’s very nice data, including another presentation at this meeting, following people for up to three years, and one of the pivotal trials for tenofovir, the 934 study, showing a continued increase in the overall population of subcutaneous fat, in people who are on tenofovir and efavirenz. I think for people who aren’t on tenofovir, these kinds of decisions and differences may be more important. And there may be a subset of individuals who are on tenofovir and efavirenz who may be developing lipoatrophy despite that. Where they may want to look at this kind of data to help guide decision-making in the future.
So this quotes your assertion in another thread that read: there's a fairly significant population of people experiencing facial wasting on atripla
But I will defer, naturally, to a diagnosis by your service provider -- right now you're just engaging in self-diagnosis, which is something everyone on these forums has witnessed over and over during many, many years. Trust me, I understand the concern and fear of this issue, but often that's what colors one's thought process when it's simple weight loss (yes, you've regained your weight but perhaps it went to your gut or ass and not your face, that still wouldn't indicate lipo caused from medications happening in a short period of time, as in four months). I'll be interested to see what your doctor says, or have you already discussed this with him/her?
Also from your second link:
As for the body fat parameters presented at CROI, a notable difference favored the use of Kaletra over Sustiva. After 96 weeks of treatment, 32% of patients in the Sustiva/NRTIs group had evidence of peripheral lipoatrophy – defined as a 20% loss of limb fat documented using dual-energy x-ray absorptiometry (DEXA) scanning – compared to 18% of patients in the Kaletra/NRTI group. In the Kaletra/Sustiva group, peripheral lipoatrophy was documented in 8% of patients.
While this difference between the Sustiva group and the Kaletra group is significant, it is important to note that the choice of NRTIs clearly played a role in the risk of limb fat loss. Among all patients using NRTIs in the study, lipoatrophy was documented in 42% of those taking Zerit, 27% of those taking Retrovir, and 9% of those taking Viread.
Among those combining Sustiva and Zerit, lipoatrophy was documented in 51%, compared to 33% among those combining Kaletra and Zerit. Approximately 40% of those pairing Sustiva with Retrovir experienced peripheral lipoatrophy, compared to 16% of those combining Kaletra and Retrovir.
As a whole, patients in the Kaletra/NRTI and Sustiva/NRTI groups who used Viread were not statistically more likely to develop lipoatrophy. However, in the comparison between the two groups, lipoatrophy was seen in 12% of patients taking Sustiva plus Viread vs. 6% of patients taking Kaletra plus Viread.
The key is that Atripla DOES NOT CONTAIN ZERIT, it contains viread -- which has the lowest incidence of lipo in the NRTI class. Also, 96 weeks is closer to two years than four months.
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Lipo can also occur as a result of the disease itself, can't it? Of course meds can be held responsible, but personally I noticed some facial changes prior to going on the meds that sped up once going on the meds.
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Lipo can also occur as a result of the disease itself, can't it? Of course meds can be held responsible, but personally I noticed some facial changes prior to going on the meds that sped up once going on the meds.
I've read of a couple cases, but it's not something that is seen very often. One would need to see pictures of before and after (which I doubt you're willing to post) as well as a discussion of the natural process of aging.
And you've been on meds as well for just four months -- you're really telling me you're seeing a marked difference in your face in that short period of time, and on Atripla which has the least (or one of) chance of developing lipo? What's your doctor say -- does he/she notice this or not?
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my post in this thread has links
http://forums.poz.com/index.php?topic=34840.0
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This is getting very confusing with your posting in so many threads -- maybe we should keep it all in one?