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Author Topic: My lipoatrophy story, just wanted to post this  (Read 14033 times)

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Offline poz4afewyears

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My lipoatrophy story, just wanted to post this
« on: April 07, 2009, 09:21:24 PM »
Hi guys! I just decided to finally make an account here after finding the site so helpful over the past few years.

I was diagnosed with HIV back in 2005. I have just turned 19 years old. I did not start medications the very next day, but very shortly thereafter.

I started on Truvada and boosted Reyataz because my doctor told me that that combo did not cause lipoatrophy or lipodystrophy. I decided to take pictures of myself the day before starting medications so I could see the progress, if any, of my body changes. Let me be the one to burst everyone's bubble and tell the world that Truvada and boosted Reyataz do cause lipoatrophy and badly, too. Literally 6 months after starting medications I had grade 3 lipoatrophy as diagnosed by 2 different plastic surgeons and a dermatologist. I was confused and angry, really I was. I felt so angry that I had been told that Reyataz/r and Truvada do not cause lipoatrophy/lipodystrophy. When I read more about it though I found that Reyataz actually can cause a significant degree of lipoatrophy, mostly facial wasting. I really was shocked because my doctor hailed these medications as having almost no side effects.
When I was younger, around 12 or so, I developed gynaecomastia. Before I was 18 I had the fat removed from my breasts and the surrounding area. Around 5 months after starting medications I had breasts again, and large ones at that probably a "B" cup. These two conditions were so unnerving that I decided to go see a plastic surgeon to have them corrected. My plastic surgeon asked me to bring in the photos I had been taking since I was on medications, and some photos from before I was HIV+ so we could compare them. He determined, like I said previously, that I had grade 3 lipoatrophy. I set up an appointment to have the fat in my breasts removed and to have fat transfered from another part of my body to my face.
I had these procedures done and I was happy with the results, initially. My plastic surgeon told me that grafted fat did not act like natural fat and that it would not waste away (again). Wrong. Within 10 months almost 80-90% of the fat grafted to my face had disappeared, and the way it disappeared was not even so on one side of my face I had more fat then the other and it looked weird. The fat in the breasts has so far not come back. After all of the fat in my face had been reabsorbed I tried to kill myself. I was so tired of being told I looked like I lost a lot of weight, and being asked if my health was okay. I would look at pictures of my old self from before I was HIV+ and even before I started medications. I looked like a monster. I looked 30 years older then I am.

In about December or January of 2007/2008 I switched my Reyataz for Isentress. I have noticed a slight, very very mild increase of fat in my face over the past year and some months.

In November of 2008 I had Sculptra injections. I know Sculptra has helped others, but I feel it was the most worthless product I ever used. The results lasted maybe, at the most, 1 and a half months and then they were gone. I thankfully got it through the patient assistance programme and my plastic surgeon administered it for a very cheap price since I was an existing patient. He normally did not participate in the patient assistance programme, but since I had been with his for years he decided to work with me. He told me for some people that Sculptra does absolutely nothing, and that the results I saw were likely due to the fluid injected along with the Sculptra. He said he had injected it into the faces of several women who came to his clinic who were not HIV+ and he did not have very good results with it.

I recently went to Clinica Estetica and I will post more about that when the results are realised.
« Last Edit: April 07, 2009, 09:30:34 PM by poz4afewyears »

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #1 on: April 07, 2009, 09:25:53 PM »
I am so sorry. I know this is a lot to read. This has been a nightmare for me. I hate how they are encouraging people to get on medications right away because supposedly the new medications have no side effects. I have never had a low CD4 cell count and the absolute longest I could have been HIV+ for without knowing is 4 months, since I used to have two HIV tests two weeks apart every 4 months.

I am so depressed about this. I am ashamed to show my face in public. I changed my job so that I don't have to interact with people anymore at work. I just work over the phone and the internet. I go home and I don't go out unless I am going to a doctors appointment. I have literally taken down all of the mirrors in my house. I don't want to even look at myself. I have been taking anti-depressants for awhile now, but they do nothing to change the fact that I look like a monster. I used to be considered a really attractive person. I got scouted as a model few times growing up. People would always tell me how cute or handsome I was.

I have basically given up my dreams of being a nurse. I still go to school, but I mostly do online courses. Anything that can't be taken online I just don't take or if it is just a lab section I take it at the local community college.
« Last Edit: April 07, 2009, 09:32:45 PM by poz4afewyears »

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #2 on: April 07, 2009, 09:41:59 PM »
I'm sorry that you are going through this and especially so young. Does your doctor have any idea what the reason is for your severe side effects from the Truvada/Reyataz? Is it tied to your earlier medical condition? It sounds like a rare case.

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #3 on: April 07, 2009, 09:50:56 PM »
It is just facial wasting I suppose. He didn't really offer any explanation, but he conceded that Truvada and Reyataz can cause lipoatrophy. He said in clinical trials about 2% of people on this combo experienced these side effects. I did not experience any increase in blood lipids, insulin, or blood glucose.

I don't think having gynaecomastia is a risk factor for developing lipoatrophy. I don't think it is as rare as we would like to think. The drug companies perpetuate this myth that just because something doesn't increase blood cholesterol that it doesn't cause lipoatrophy/lipodystrophy. I have never abused alcohol or drugs, I smoked a joint once when I was 15 that's about it.

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #4 on: April 07, 2009, 10:06:16 PM »
I really don't buy into conspiracy theories, but..
    I have been experiencing huge hyperlipidemia issues from this combo although it is reported to be a good combo for lipids.  I guess I am just hypersensitive. But the truvada, boosted reyataz combo is the first one to maintain undetectable levels since I started way back when. Each body is different so not everyone is going to react the same. At least we have the drugs to keep us alive, thank the gods.  A bit bruised and battered from the battle, but still alive and kicking butt.

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #5 on: April 07, 2009, 10:15:20 PM »
Well, I may be one of the few but I am not thankful to be alive. I can't even show my face in public. I go to work and sit in front of the TV when I get home. The whole entire year of 2008 I did not go out and do 1 single thing. When it was my birthday I invited very very close members of my family over, people who know what I am going through and who do their best not to judge, and we just sat around the house.
I don't know how much longer of this I can take. I really don't.

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #6 on: April 07, 2009, 10:35:24 PM »
Are there any support groups where you live? I tried around where I live, but I didn't feel like I had anything in common. I ended up traveling to the SF bay area to join a club with long timers but the group disbanded.

    I'm certainly not going to lecture you on secluding yourself. I did that for many many years. I found out that I was poz in high school in the mid 80's. There was absolutely nothing in the terms of support for teens and it was "a death sentence" at that time. Yeah I have battle scars, Yeah I have had that "AIDS face" several times (especially at my high school reunion looking like death warmed over). I stopped caring about what people thought or think. But that took time.

Offline Miss Philicia

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Re: My lipoatrophy story, just wanted to post this
« Reply #7 on: April 09, 2009, 05:58:47 PM »
Dear poz4afewyears -- first of all, as someone that has had lipo (from meds used in the 90's) for over a decade my heart goes out to you both physically and mentally.  However, and I know this gives you little comfort, I find that your doctor's advice is what was provided on good faith.  By your own admission you have ahd PRE-HIV body changes, and perhaps this simply indicates a genetic disposition to such things.  I suppose there is little comfort in this, but all HIV meds can cause body shape changes, and if combined with a preexisting situation of body dysmorphic disorder than yes, there's the potential for HIV meds to do things that in most cases they will not do (i.e. with the "best case" meds like Truvada and Reyataz.

I guess what I'm saying is that there are other HIV meds that most likely would have made your situation that much worse.

My heart does out to your, really -- this is not ideal at the age of 19.  I suppose you could try and change to something like a Isentress and Fuzeon (injection) regiment, but most likely that will still be combined with Truvada.  I hope your results at Clinica Estetica find you some happiness.

Furthermore, it's hard on a forum to take stock of how you are, in fact, seeing yourself -- if you should so feel willing there's a group of us that would be more than willing to look at your before and after pictures if you should feel so inclined.  For my self, I know that I somewhat was more sensitive of body shape changes than I should have been, and yes, mine started back in my 20's which of course is very different mentally than from those folks who encounter such changes in their late 40's or 50's.

Best of luck.
"I’ve slept with enough men to know that I’m not gay"

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #8 on: April 09, 2009, 10:06:46 PM »
Thank you, Ms. Phillicia.

I know it could have been MUCH MUCH MUCH worse. Like, I have thus far not developed any kind of lipodystrophy belly or a buffalo hump. I have not lost weight in my arms or legs. It is just my face and breasts. I know that had I been taking AZT/£TC and Crixivan I would have likely experienced those side effects as well. My doctor is considering an NRTI sparing regimen for me to take.

....But it was my face. The first thing people see when they look at me. The thing that differentiates me from the person standing next to me. I would not recommend anyone do fat grafting to the face with HIV associated lipoatrophy. It is not a permanent solution, no matter how permanent your surgeon tries to make it look. I forked over $20,000 for fat grafting to my face, suctioning of fat from my breasts, and a masectomy. I do not have this kind of money, but considering I have had severe lipo I do not do anything so I saved up $20,000 very quickly. I moved out of my apartment in a posh area of Montomgery area to go live in a small studio flat, got rid of my car, all so I could get this surgery.

I actually thought I looked better then I did. When I looked in the mirror I did not think I looked so bad, at first. But when I took pictures and video of myself I looked terrible. My face was drooping. I really looked like I was in my late 40's, no joke. I really hope this PMMA works. I feel really hopeful based on how everyone else has rated their results.

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #9 on: April 09, 2009, 10:15:35 PM »
Ms. Phillicia,

My biggest problem is is the fact that the drug companies try very hard to perpetuate this myth that Truvada and Reyataz do not cause lipoatrophy. You are right though, all meds can cause lipid problems. Except for, I think, Nevirapine. I hope so badly that Norvir is soon replaced. I really wanna stick to those bastards over at Abbott.

I think that HIV prevention should focus on the side effects of ARVs. Like I read in another thread, there is this "5th Avenue" vision of what life with HIV is like now that we have meds. And the drug companies are partly to blame for that. Gilead is doing a casting call for Truvada and they don't want anyone with signs of lipoatrophy/dystrophy. Pffft.

Offline next2u

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Re: My lipoatrophy story, just wanted to post this
« Reply #10 on: April 09, 2009, 10:49:37 PM »
man,

i hope this works out for you. i know some of the others here have said good things about the clinic you are looking at. when is your appt?

best,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Miss Philicia

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Re: My lipoatrophy story, just wanted to post this
« Reply #11 on: April 10, 2009, 07:33:55 AM »
I hope so badly that Norvir is soon replaced. I really wanna stick to those bastards over at Abbott.

Look into the phase 3 trial of GS-9350 that I've discussed in this thread:

http://forums.poz.com/index.php?topic=26258.0

I'll be going on this in a few months -- but really it's more geared towards visceral fat, not lipoatropy in the face as you are experiencing, but perhaps it's worthwhile.  Considering that you have had gynaecomastia at the age of 12, pre-diagnosis, it may be that you have an odd genetic disposition to these metabolic dysfunctions.

Please keep us posted.
"I’ve slept with enough men to know that I’m not gay"

Offline mjmel

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Re: My lipoatrophy story, just wanted to post this
« Reply #12 on: April 10, 2009, 10:10:26 AM »
poz4afewyears, it takes awhile so patience is required of you. collegen will build around the particles of Precise. it's so gradual that intitially you may experience disappointment, discourgement. do not choose to allow this to rule the day, so to speak. it'll do it's thing over time. transition time factor = a full 3 months.
 
pick a setting you can recreate  (light & background)
take a self-pic now; then self-pic in early Aug.
(pics: one frontal, one side, other side)

:)
chin up and consider wisdom/encouragement offered by other posters in this thread.

Mike

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #13 on: April 10, 2009, 10:31:46 AM »
Yes please keep us posted.

And let us know how you are recovering from your procedure.  Just hang in there, we're here to listen.

Big Hugs,
Sharkie

Offline Peter Staley

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Re: My lipoatrophy story, just wanted to post this
« Reply #14 on: April 10, 2009, 10:59:48 AM »
My biggest problem is is the fact that the drug companies try very hard to perpetuate this myth that Truvada and Reyataz do not cause lipoatrophy.

poz -- actually, you shouldn't blame Gilead for this.  Most AIDS advocates and researchers also feel the evidence thus far shows that Truvada and Reyataz are close to being the most lipo-friendly meds on the market.  Yes, ALL the HIV meds can cause lipo, and all their labels say this.

Gilead doesn't hide this fact.  Here's their side effects page on Truvada.com:
http://www.truvada.com/pat140_possible_side_effects.aspx

See the 2nd paragraph:

Quote
Changes in body fat have been seen in some people taking TRUVADA and other anti-HIV-1 medicines.
If you notice any symptoms of infection soon after you start HIV treatment, talk to your doctor right away.

This is the standard language all the HIV meds carry.

My concern here is that your highly unusual story will scare folks unnecessary who are currently taking or thinking of starting Truvada + boosted Reyataz.  If someone is afraid of lipoatrophy (and who isn't?!), then this combo is one of the safest to take in this regard.

I'm not negating your experience, but for our larger audience, it needs to be put in perspective.

Finally, Philicia mentioned body dysmorphic disorder (BDD) as a possible cofactor in your situation.  Has this ever been raised by any of the physicians you've dealt with?  I hope you won't be offended by this question.  But your very young age, multiple cosmetic procedures, and severe social isolation are all classic symptoms of BDD.

Offline so_out_of_things

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Re: My lipoatrophy story, just wanted to post this
« Reply #15 on: April 10, 2009, 08:22:33 PM »
Poz4yrs

sorry for your experiences.

I tested poz in '97 aged 28, CD4 was 380 went on treatment in 04, (stavudine, lamivudine and nevirapine) CD4 was 162. I was in my native Southern Africa. within 2 years I had lost my hips.....i kinda noticed but it hit me so badly when I went shopping for underwear one day. I knew I had gone from an XL to M for most styles but it did not feel that bad...i did not acknowledge it somehow, didn't want to, i guess. When it hit me how bad my situation was, was when the shop attendant measured me to make sure I was buying the right thing (coz of no returns on underwear policy). My hip measurement was smaller than my waist! I agreed with her that it was strange....i was not thinking abt my poz status so we took several measurements...then i had a light bulb moment. I was depressed. There was nothing my doctor could do becasue the med combination i was on was the most affordable and widely available. Other than wasting it was working for me it terms of CD4 counts etc.

I relocated to Europe temporarily (4yrs+) for further studies and changed stavudine for AZT.  I still do not have my hips. my skirts, jeans look and feel funny esp because i have belly fat (coz of the meds). Shopping is a bit of a drag really. At some point I had huge boobs, which i did not like. My boobs have subsided I do not know why but am happy. I have learnt to live without my hips...i miss them v much. Its no good 4 myself esteem. I think the situation kinda changes but i do not know the ext of change. My EU medical team tells me that there is no guarantee that a diff combination will restore my hips and of course the problem that whatever new combo they give might not be avail back home. So... ???

If it's any comfort....i try to make peace with new body shape. I take comfort in being undetectable, CD4 over 650. I struggle with irritable bowel syndrome thanks to stresses of adult learning. I cannot afford plastic surgery...i do not know i'd have tried it if i had a chance. :)

Ciao
Soots







Offline Inchlingblue

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Re: My lipoatrophy story, just wanted to post this
« Reply #16 on: April 10, 2009, 09:36:29 PM »

Re: the fat transfer to your face, what's a real shame is that any plastic surgeon worth his salt knows better than to think this could be successfully done on someone who is HIV+ I'm not saying you should dwell on that fact, the doctor may honestly not have known this and you need to move forward but it's a known fact that fat transfer is a procedure that doesn't work on individuals who are +

PMMA is a different story of course. It seems to be the best thing out there, so many people are happy with the results, I'd take comfort in that if I were you. May I ask: how did you decide on Clinica Estetica?


Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #17 on: April 10, 2009, 10:21:28 PM »
Peter Staley,

I have had BDD considered, but the rating scale I used was based off of what 3 different doctors told me.

I know it really sounds extreme, it really does. But I took pictures of myself right before I took meds. I also referenced pics of me before I was poz and I looked about the same before I took meds. I was told about 6 months after taking Reyataz and Truvada that I had grade 3 lipoatrophy. I actually thought I looked better then I did, but when I had pictures taken of myself I looked awful.

The worst part about the fat grafting was that when they fat was leaving my face it was leaving evenly. The right side of my face was much more sunken then the left and it looked really strange. Also, I lost oxygen to my brain while in surgery. I was able to sue the anaestheiologist and I actiually won, but for a while after that I had memory deficits. I am just still so upset that I wasted $20000 on fat transfer and breast reduction surgery when I could have just gotten PMMA in my face and "smartlipo" on my chest.

Also, like I have stated, I know things could be much worse. Being on Truvada and Reyataz probably prevented me from getting a buffalo hump and a belly. I can honestly say I have no seen any increase in belly fat other then from the small amount of weight I have gained.
« Last Edit: April 10, 2009, 10:33:48 PM by poz4afewyears »

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #18 on: April 10, 2009, 10:22:41 PM »
I chose Clinica Estetica because of all of the reviews I have read on here and "thebody.com". That is why this site has been so helpful for me. I would have had no idea where to go had I not read this stuff. This is also why I decided to post my testimony about the clinic, because I feel like personal testimony is all people have to go on with some of these places.

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #19 on: April 10, 2009, 10:28:35 PM »
Peter Staley,

What really makes me upset about these meds is that people are recommending they be started earlier and earlier. People act like these meds have no side effects or something. They may have less side effects hen before, but they are definitely not without side effects. I would have liked to have started meds knowing what I was getting myself into. I did NOT need to start meds at the time. Even by current recommendation I did not need to start meds. I just feel like HIV/HAART has ruined my life and I am trying so badly to get it back. I am really so angry at myself for allowing myself to have bareback sex. If I had known my life would be destroyed I would seriously have never have had bareback sex. But guys my age don't worry so much about HAART/HIV. It is "manageable" for us. You just need to take "one pill a day" now. No one tells you that you will never be beautiful again and that people will look at you like a disease. No one tells you that you will look 30 years older then you really are. No one tells you that you will develop man tits. No one tells you any of this.

Offline Inchlingblue

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Re: My lipoatrophy story, just wanted to post this
« Reply #20 on: April 11, 2009, 01:47:34 AM »
  I did NOT need to start meds at the time. Even by current recommendation I did not need to start meds. 

Do you remember what your CD4 & viral load were when you started?

Offline Peter Staley

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Re: My lipoatrophy story, just wanted to post this
« Reply #21 on: April 11, 2009, 07:47:14 AM »
Peter Staley,

What really makes me upset about these meds is that people are recommending they be started earlier and earlier. People act like these meds have no side effects or something. They may have less side effects hen before, but they are definitely not without side effects. I would have liked to have started meds knowing what I was getting myself into. I did NOT need to start meds at the time. Even by current recommendation I did not need to start meds. I just feel like HIV/HAART has ruined my life and I am trying so badly to get it back. I am really so angry at myself for allowing myself to have bareback sex. If I had known my life would be destroyed I would seriously have never have had bareback sex. But guys my age don't worry so much about HAART/HIV. It is "manageable" for us. You just need to take "one pill a day" now. No one tells you that you will never be beautiful again and that people will look at you like a disease. No one tells you that you will look 30 years older then you really are. No one tells you that you will develop man tits. No one tells you any of this.

poz4afewyears -- I thought you had the gynecomastia ("man tits") when you were 12, and had a procedure to reduce them when your were 18.  All of this occurred before your HIV diagnosis when you were 19.  Then after starting therapy, you think the gynecomastia got worse.  This history doesn't really point a finger at the meds you took.

I'm worried about your reliance on diagnoses from plastic surgeons -- that profession doesn't have the best record of medical restrain and of being able to give non-financially influenced diagnoses.

If my doubts upset you in any way, I apologize.  We would be more than happy to provide you with a well-informed take on this, since Tim Horn and I have been following all the science behind lipodystrophy since it was first characterized in the 1990's.  You could send us your before and after antiviral treatment pics to editors@aidsmeds.com.  We know exactly what grade 3 facial lipoatrophy looks like (I've had exactly that grade myself, and corrected it, like you, with PMMA).  Mine was diagnosed by a doctor with a huge HIV practice, and then a leading researcher in the field (one of the perks of attending lots of AIDS conferences where the latest research on lipo is discussed). 

Offline Miss Philicia

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Re: My lipoatrophy story, just wanted to post this
« Reply #22 on: April 11, 2009, 02:31:41 PM »
Coorelation does not mean causation.  I find it hard to believe that a grade 3 would progress within 6 months without some underlying genetic component pre-diagnosis.  This is sending all sorts of red lights up for me, though certainly I sympathize with your mental plight.
"I’ve slept with enough men to know that I’m not gay"

Offline minismom

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Re: My lipoatrophy story, just wanted to post this
« Reply #23 on: April 11, 2009, 08:09:06 PM »
Small off-shoot of the original post, but what exactly are the "grades" of lipo?  Are there only 3 and how are they defined?

Sorry if this messes up the progress of the thread.

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Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #24 on: April 12, 2009, 02:06:40 PM »
Honestly, I really don't know if having had gynaecomastia prior to be diagnosed HIV+ predisposes someone to developing lipoatrophy. I don't know whether or not studies have even been done on it.

Peter Staley,

I understand your concern with my reliance on a plastic surgeons opinion. However, I also consulted a dermatoligist about Artefill and asked her the degree of my lipoatrophy and she said about a grade 3. I see why they would have incentive to dramatise things, but they really had no reason to. I was in for a free consultation and was under no obligation to choose any of them to fix my face. I personally can also look at pics for before and after and see a profound difference.

I believe I read an article, a long time ago, that said that Reyataz was a drug that was very likely to cause lipoatrophy, but it did not raise lipids or blood glucose levels.

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #25 on: April 12, 2009, 02:42:49 PM »
Here is a link for the aidsmeds.com site

http://www.aidsmeds.com/articles/hiv_aids_lipodystrophy_1667_13903.shtml

"Although certain drugs were associated with either fat accumulation—Crixivan (indinavir), efavirenz (found in Sustiva and Atripla), Viracept (nelfinavir) and abacavir—or fat loss—Reyataz, Sustiva, Viracept and abacavir—the authors caution that association in this study does not mean that any of these drugs can be seen as the cause of the fat accumulation or loss."


Use of Reyataz was associated with fat loss, although they can't say that Reyataz actually caused the fat loss (presumably because they would be sued or because there are a high amount of HIV+ who go to doctors to get fat sucked out of their faces to make it look like the drugs are causing it).

Offline David Evans

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Re: My lipoatrophy story, just wanted to post this
« Reply #26 on: April 13, 2009, 12:08:55 PM »
I looked into the data from the article that you referenced, and realized that I (the writer) should have referenced the data differently. When the researchers did the most simple and crude analysis (called a univariate analysis), Reyataz showed up as being associated with fat loss. When they did a more complex analysis, however, which is the gold standard and tries to factor in anything that might affect the outcome, Reyataz was no longer associated with fat loss.

A univariate analysis would be something like saying that in a large study of lung cancer in the U.S. population, having blond hair was associated with lung cancer. A multivariate analysis would factor in smoking, which would allow the researchers to see that blond people in their study were a lot more likely to smoke. Therefore, when you factor out smoking (a multivariate analysis), being blond is no longer associated with lung cancer.

It's the same here. When all they did was a simple comparison of physician-assessed fat loss, they found that more people (than average) who were taking Reyataz appeared to have fat loss. However, when they factored in gender, body mass index, use of Zerit and Retrovir and the like, they found that taking Reyataz was no longer associated with fat loss. I've updated the page to reflect this.

In all the large lipoatrophy studies that have been done, Reyataz and Truvada have been found to fairly neutral in terms of fact loss and accumulation. I can totally understand, however, why that would seem like nonsense (and probably very frustrating) to you if you only started experiencing fat loss after starting a combo on those drugs.

Unfortunately, when it comes to both fat loss and accumulation, we still don't have a perfect understanding of their causes. We know for sure that Zerit, and to a lesser extent Retrovir, are strongly associated with both peripheral fat loss and probably central fat gain. Moreover, studies have shown that when people switch off of those two drugs and onto Viread or Ziagen, they seem to gain back some of the fat they lost in their limbs. There are some basic science studies that seem to say that protease inhibitors, as a class, can disrupt fat metabolism, but this has never been conclusively proven in clinical trials. Unfortunately, we don't have better data than that.

Sincerely,
David

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #27 on: April 14, 2009, 11:01:45 AM »
Oh okay, thank you, Dave Evans. Like you said, however, we are not entirely sure what causes either lipoatrophy or lipodystrophy. I read an article in a scientific journal that said that theory that they are caused by mitochondrial dysfunction may be wrong and that it may be a disorder of the sympathetic nervous system. They said that the theory of mitochondrial dysfunction doesn't explain all cases, because patients on seemingly benign drugs still develop it at times.

http://www.aidsmap.com/en/news/D7D62CC4-A94E-4EA2-AD52-7322822EBB77.asp

Offline moskimo

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Re: My lipoatrophy story, just wanted to post this
« Reply #28 on: April 14, 2009, 04:14:23 PM »
i read scary stories of side effect of these drugs and i am suppose to start taking them anytime from now, honestly i am scared.please what do i do,i cant imagine taking medications everyday for the rest of my life, i am only 35 i ve laboured all my life to make my life comfortable,i think i can cope if it will keep me alive,but  these side effects,lipotrophy.or ipodystrophy, fat restribution what are these things !they sound strange to me,i hope i wont resort to wearing a mask one day.i am very confused.

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #29 on: April 15, 2009, 10:06:52 AM »
i read scary stories of side effect of these drugs and i am suppose to start taking them anytime from now, honestly i am scared.please what do i do,i cant imagine taking medications everyday for the rest of my life, i am only 35 i ve laboured all my life to make my life comfortable,i think i can cope if it will keep me alive,but  these side effects,lipotrophy.or ipodystrophy, fat restribution what are these things !they sound strange to me,i hope i wont resort to wearing a mask one day.i am very confused.

moskimo,
    everyone is different and there is no guarantee that you will or will not have noticeable side effects. You probably have enough on your plate tfocusing on starting meds (that will save your life) as well as handling your situation of disclosing your status to your wife, girlfriend (or both...whichever it is) and dealing with that.

Offline Miss Philicia

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Re: My lipoatrophy story, just wanted to post this
« Reply #30 on: April 15, 2009, 11:34:15 AM »
Newly diagnosed and/or new to treatment individuals should always take care to note that the large majority of lipo issues derive from those patients that were on treatment in the 1990's -- things like Zerit and Hivid that aren't used much anymore.
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Offline Inchlingblue

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Re: My lipoatrophy story, just wanted to post this
« Reply #31 on: April 15, 2009, 01:54:29 PM »
Small off-shoot of the original post, but what exactly are the "grades" of lipo?  Are there only 3 and how are they defined?

There's a website www.facialwasting.org that's very informative and they describe 4 Grades of facial lipoatrophy and show pictures.

I'm pretty sure I've read accounts of individuals having Grade 5 but facialwasting.org seems to only describe up to 4 Grades.

Offline Tower311

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Re: My lipoatrophy story, just wanted to post this
« Reply #32 on: April 15, 2009, 02:26:28 PM »
Yeah, I'm with Moskimo!

This sounds HORRIBLE!  I mean, come on...

I have so many questions.  I'm all over the road with this.  I mean, I haven't had any tests done at all (that's Friday morning - HURRY UP FRIDAY!), but - do we really have to take this stuff that messes up our bodies so badly?!  Maybe I should not read this stuff until I know what's up with me.

I'm trying to get prepared for everything that's coming, but I've talked to people that say I may not need medicine for years and years.  I'm prepared to say NO to the doctor is they recommend treatment right away.  I'm obviously going to take their advice under careful consideration, but oh my god...  In addition, I have absolutely no insurance - I know there are funds out there to help with $ (ADAP, etc) but I'm not really going to be able to run all over the place asking for additional opinions.  I don't have money and no insurance, so I'm going to be at the mercy of the medical profession. 

I'm gonna start looking at other options...eastern medicine...? 

Offline sharkdiver

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Re: My lipoatrophy story, just wanted to post this
« Reply #33 on: April 15, 2009, 08:49:17 PM »
Yeah, I'm with Moskimo!

This sounds HORRIBLE!  I mean, come on...

I have so many questions.  I'm all over the road with this.  I mean, I haven't had any tests done at all (that's Friday morning - HURRY UP FRIDAY!), but - do we really have to take this stuff that messes up our bodies so badly?!  Maybe I should not read this stuff until I know what's up with me.

I'm trying to get prepared for everything that's coming, but I've talked to people that say I may not need medicine for years and years.  I'm prepared to say NO to the doctor is they recommend treatment right away.  I'm obviously going to take their advice under careful consideration, but oh my god...  In addition, I have absolutely no insurance - I know there are funds out there to help with $ (ADAP, etc) but I'm not really going to be able to run all over the place asking for additional opinions.  I don't have money and no insurance, so I'm going to be at the mercy of the medical profession. 

I'm gonna start looking at other options...eastern medicine...? 


Consider the alternative if you need to go on meds and you don't. An AIDS death is not quick and definitely not pretty.    Yes it's a big and important decision to start medication. There has been a lot of changes and improvements since HAART was available.

Offline freaky_dream

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Re: My lipoatrophy story, just wanted to post this
« Reply #34 on: April 16, 2009, 09:18:35 PM »
I'm prepared to say NO to the doctor is they recommend treatment right away. 

So you are going to make your decision just because you want to be a contrarian? Why don't you inform yourself and read up on the lessons on this site or thebody.com. Or better yet read some of the stories from people who refused to start HARRT and ended up in the hospital with nasty OI's and then spent years trying to salvage their immune systems. Food for thought.

Looks like this thread did exactly what Peter feared would happen.

Offline Ann

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Re: My lipoatrophy story, just wanted to post this
« Reply #35 on: April 17, 2009, 07:19:32 AM »

but - do we really have to take this stuff that messes up our bodies so badly?! 


No, we don't HAVE to take the meds, but as Sharky and Freaky have pointed out, hiv will mess our bodies up a helluva lot more than the drugs will. It's absolutely your choice, but I'd venture to say that you'd be even more displeased with KS lesions on your face or other visible parts of your anatomy.

Lying in a hospital bed with tubes coming out of every orifice of your body isn't a good look either.

The new combos used today are "fairly neutral in terms of fact loss and accumulation" (as Dave Evans points out) BUT...

Hiv is definitely NOT NEUTRAL where OIs are concerned!


I'm gonna start looking at other options...eastern medicine...? 


You can "look at other options" all you want, but the ONLY proven thing to keep hiv under control is the anti-retroviral medicines.

Don't let one person's isolated experience deter you from taking hiv meds when your numbers say it's necessary.

Ann
« Last Edit: April 17, 2009, 07:22:02 AM by Ann »
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Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #36 on: April 17, 2009, 11:42:17 AM »
So Ann, are you suggesting that I am the only person to develop lipoatrophy/lipodystrophy while taking Reyataz and Truvada? The problem is is that there is no standard definition for what constitutes lipoatrophy or lipodystrophy. Many studies of Reyataz's effect on lipodystrophy look only at cholesterol levels, blood sugar, and fasting insulin. I did not have any of those problems.

Offline Tower311

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Re: My lipoatrophy story, just wanted to post this
« Reply #37 on: April 17, 2009, 12:05:36 PM »


You can "look at other options" all you want, but the ONLY proven thing to keep hiv under control is the anti-retroviral medicines.

Don't let one person's isolated experience deter you from taking hiv meds when your numbers say it's necessary.

Ann


You make a really good point.  You're right, and of course that's what I meant when I said I would take my doctor's advice under consideration.  From the reading I've done, I know you're right.  It just scares the shit out of me. 

I went today for my first lab and met with all the nurses and got set up with a counsellor.  I'll find out what my jucie is made of in 2 weeks.  I'm hoping my numbers are awesome. 

Offline Peter Staley

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Re: My lipoatrophy story, just wanted to post this
« Reply #38 on: April 17, 2009, 12:15:59 PM »
So Ann, are you suggesting that I am the only person to develop lipoatrophy/lipodystrophy while taking Reyataz and Truvada? The problem is is that there is no standard definition for what constitutes lipoatrophy or lipodystrophy. Many studies of Reyataz's effect on lipodystrophy look only at cholesterol levels, blood sugar, and fasting insulin. I did not have any of those problems.

Actually, as a few of us have already expressed, we have serious doubts that you actually have facial lipoatrophy.  You have all the signs of an equally challenging illness:  body dysmorphic disorder (BDD).

So no, I have never heard of someone starting therapy for the first time (no prior history of HIV meds) at your age, using Reyataz + Truvada, that's developed grade 3 facial lipoatrophy.  I also don't think there's been a single study with this combo that's shown this to happen when used as first-line therapy.

If you want to put my suspicions to rest, it's very easy.  You could send me your before treatment and after treatment pictures that you've mentioned a few times already to editors@aidsmeds.com.  If you are worried about anonymity, you could crop the pictures first, sending only the bottom half of your face pics (everything below the eyes).  If indeed these pics show even grade 2 facial lipoatrophy, I will publicly apologize for doubting your story.

However, I'm betting the pictures will never be sent.  A person with BDD typically seeks out information and opinions that only reinforce or confirm their self-diagnosis.

I'm sorry for the harsh nature of this reply, but my worst fears about this thread have started coming true.  It is unnecessarily frightening other newly infected individuals in these forums.  They have enough to deal with without reading about unsubstantiated side effects.

Offline Ann

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Re: My lipoatrophy story, just wanted to post this
« Reply #39 on: April 17, 2009, 12:26:13 PM »
Thanks, Peter, you took the words right outta my mouth! ;)
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Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #40 on: April 17, 2009, 12:39:09 PM »
I will send them later on today. I just have to figure out how to cut out the eyes, since that is what would identify me. :-)

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #41 on: April 17, 2009, 10:48:37 PM »
I sent you 4 photos. I wonder what you are going to tell me after you see those. Maybe you will tell me that I was mistaken and that I couldn't have been taking Reyataz and Truvada. You will see my face looks MUCH different before HAART and after. There is just no two ways about it.

And what you said about me is wrong. You said that I was looking for reassurance that I had lipoatrophy when I did nothing of the sort. I didn't ask for anyone's confirmation. 3 doctors is enough to convince me. I did not ask anyone on here to evaluate my photos and tell what they thought or anything of the sort. I would suggest you quit trying to play amateur psychiatrist. I have never been diagnosed with BDD or an eating disorder or anything else of the sort. Yet you, over the internet, seem to think you can shove my posts into the DSM criteria.

Offline Inchlingblue

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Re: My lipoatrophy story, just wanted to post this
« Reply #42 on: April 18, 2009, 02:31:43 AM »
I was diagnosed with HIV back in 2005. I have just turned 19 years old. I did not start medications the very next day, but very shortly thereafter.

I'm curious about something if you don't mind my asking: from what you write above, you were diagnosed when you were 16 or 19? I can't tell from the wording.

Do you know what your CD4 count and VL was when you started meds?

I hope the PMMA worked out for you ;)
« Last Edit: April 18, 2009, 02:33:22 AM by Inchlingblue »

Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #43 on: April 18, 2009, 10:49:28 AM »
I'm sorry. I meant that at the time of my diagnosis I had just turned 19, not that I just recently turned 19.

Offline Peter Staley

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Re: My lipoatrophy story, just wanted to post this
« Reply #44 on: April 18, 2009, 11:06:08 AM »
I sent you 4 photos. I wonder what you are going to tell me after you see those. Maybe you will tell me that I was mistaken and that I couldn't have been taking Reyataz and Truvada. You will see my face looks MUCH different before HAART and after. There is just no two ways about it.

And what you said about me is wrong. You said that I was looking for reassurance that I had lipoatrophy when I did nothing of the sort. I didn't ask for anyone's confirmation. 3 doctors is enough to convince me. I did not ask anyone on here to evaluate my photos and tell what they thought or anything of the sort. I would suggest you quit trying to play amateur psychiatrist. I have never been diagnosed with BDD or an eating disorder or anything else of the sort. Yet you, over the internet, seem to think you can shove my posts into the DSM criteria.

poz4afewyears -- thanks for sending the pics.  Tim Horn, Ann and I all gave them a look.  Between the three of us, we've seen a huge amount of facial lipoatrophy over the years among many long-term survivors with HIV.  I myself have suffered from it, and like you, have traveled to Tijuana for PMMA fillings.

I'm sorry Poz, but all three of us don't see evidence in the pics you sent of the kind of facial lipoatrophy we've witnessed over the years in people with HIV.  Granted, we are NOT medical professionals, but we are all long-term AIDS advocates (and have all been living with HIV for many years).  We believe these are your pictures, and that you were taking Reyataz + Truvada.  It's just the facial lipoatrophy we're not seeing evidence of.

I've edited the pics you sent us to black out your eyes and mouth, and sent them back to you in case you'd like to post them in this thread for others to see.  With the editing I did, the pics couldn't be more anonymous.  But obviously, that's your choice.  We can only offer our opinions, for what they're worth.

I can tell you're a really nice guy, Poz, and I'm very glad you decided to start posting in our forums after years of lurking.  I realize you and I are just going to have to disagree on your lipo diagnosis, but that doesn't mean I don't want to you to keep discussing it and other issues in our forums.

I've said my piece about BDD, and promise not to bring it up again or play "amateur psychiatrist" with you anymore.



Offline poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #45 on: April 18, 2009, 11:17:45 AM »
Okay, so my face from 4 months before being diagnosed with HIV looked identical or very similar to my face 6 months after? My face changed a lot over those 10 months.

Offline Assurbanipal

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Re: My lipoatrophy story, just wanted to post this
« Reply #46 on: April 18, 2009, 11:56:42 AM »
I'm sorry you are feeling unhappy and don't want to make you feel like people are piling on.  But just factually, well ... peoples faces do change in spurts sometimes.  Some people's faces change very gradually over time and other's tend to do so all at once.

Here's what the FBI experts say (the one's who do all those facial aging analyses):
"Aging is a highly individual phenomenon. How this process manifests in a given individual is determined, in large part, by genetics and general human variation (Loth and Iscan 1994; Neave 1998; Novick 1988; Orentreich 1995). Like biological development, aging in different people does not take place at a uniform rate (Subtelny 1959), may occur in spurts, and is unpredictable with regard to the specific numerical age of an individual (Bulpitt 1995; Feik and Glover 1998; Loth and Iscan 1994; Neave 1998; White 1991). Differences in the rate of aging between men and women have been documented by many researchers, who attribute the seemingly faster onset of age in females to sex-specific characteristics such as skin thickness (which also varies racially and regionally) and hormonal activity—especially with relation to menopause (Callens et al. 1996; Dumont 1986; Feik and Glover 1998; Neave 1998). In both sexes, however, individual hormonal changes as well as diet, skin pigmentation, and level of physical activity play a significant role in the onset and visibility of physical aging (Kadunce et al. 1991; Landau 1989; Neave 1998; Novick 1988; Orentreich 1995)."
http://www.fbi.gov/hq/lab/fsc/backissu/april2000/taister.htm#aging:%20biology%20and%20chronology

Hope you feel better
A


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 poz4afewyears

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Re: My lipoatrophy story, just wanted to post this
« Reply #47 on: April 18, 2009, 12:08:01 PM »
Yes, well I still trust the opinions of 2 different cosmetic surgeons and a dermatologist who I had been seeing since I was 16.

 


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