question about tolerance to meds and facial wasting.

[peterhelms]

as some of you may know, my boyfriend is hiv positive.
he hasnt started medication yet, and it doing great, but i guess in about 6 months or so( you never know) . he may have to start.
I have 2 questions.
1) i know this varies from person to person, but are hiv meds hard to tolerate , how many of you feel badly on a daily basis because of the meds ?
2) what is the porcentage of people taking the meds that experience facial wasting? i asked his doctor and she said that almost everyone does.

[DanielMark]

No facial wasting for me, Peter. I have in fact gained weight since beginning my med combo. And no, I do not feel bad on a daily basis (seldom ever in fact) due to my medications.

Of course, there is no one universal answer to your questions so I’m sure you'll get a variety of replies.

Daniel

[mjmel]

and here is one differing from DanielMark:
1. everyday..... feel a sense of fatigue everyday. It can be surmounted; stay active and it goes away--till the normal end of the day slumps.
The bitch is getting started each day. Use to deal with severe diarrhea but thats been successfully remedied.
2. your doc did not lie. almost everyone. I don't handle the facial wasting as stoic as some so I had some plastic injected under my facail skin and now I appear as cosmetically normal as anyone not having lipo. I absolutely hate it when people stare at people who have wasted syndrome.

some of what will contribute to the variety of responses is meds, previous lifestyles, current lifestyle, personal genetics (immune system), and state of mind (perception) of human personalities.
another thing.....this virus....it's so strange, strong and mysterious.
xxx,
Mike

[leatherman]

1) i know this varies from person to person, but are hiv meds hard to tolerate , how many of you feel badly on a daily basis because of the meds ?
2) what is the porcentage of people taking the meds that experience facial wasting? i asked his doctor and she said that almost everyone does.

in reverse order:

2)been poz and on meds (allll kinds!) since 94. Except for losing some weight during some "barf-y" times of my life, no wasting here. Actually I'm still the same weight I was when I graduated high school 27 yrs ago.

1)this one does vary alot from what I've read here. Personally, after 15 yrs I had about given up on all the meds. I was so tired of puking EVERY damned day of my life - either from just being sick, or as a side effect. Luckily the meds have gotten better, and I got a new doctor that worked with me to get a combo that didn't make me so sick and keep my VL down. I still have a few bad days a month (I was hanging onto the toliet this morning in fact) but it's so much better than years ago when AZT was the only thing to take.

[newt]

On the first, for me personally, apart from the odd day of Norvir nausea, no side effects. A few in the beginning, but minor.

On facial wasting, your doc should go read some papers.  This is related in almost all cases to d4T (Zerit) and AZT (Retrovir).

The d drugs (d4T and the discontinued ddC) plus AZT belong to a particular subclass of nucleosides and if you avoid these facial wasting is very very very unlikely. 

The other d drug, ddI (Videx) seems to behave differently.

It is of course difficult to tell for certain with the nucleosides since they are used in pairs, but it is well documented that the worst drugs are d4T and AZT, and other drugs are not generally connected to facial wasting.

Therefore I differ with the poster (2 posts) above on incidence. People starting on modern combos (ie no AZT, no d4T) almost never get facial fat loss.

Fat loss (lipoatrophy)

- matt

[DavidinCA92284]

On the first, for me personally, apart from the odd day of Norvir nausea, no side effects. A few in the beginning, but minor.

On facial wasting, your doc should go read some papers.  This is related in almost all cases to d4T (Zerit) and AZT (Retrovir).

The d drugs (d4T and the discontinued ddC) plus AZT belong to a particular subclass of nucleosides and if you avoid these facial wasting is very very very unlikely. 

The other d drug, ddI (Videx) seems to behave differently.

It is of course difficult to tell for certain with the nucleosides since they are used in pairs, but it is well documented that the worst drugs are d4T and AZT, and other drugs are not generally connected to facial wasting.

Therefore I differ with the poster (2 posts) above on incidence. People starting on modern combos (ie no AZT, no d4T) almost never get facial fat loss.

Fat loss (lipoatrophy)

- matt

I tend to disagree with the above.   While I noticed my facial wasting problems on a particular HAART regiment . . . it was noted by my doctor and others that it's quite difficult to actually pinpoint the exact cause of the wasting.  It could be because of being long-term survivor.  It could be because of particular drugs.  It could be because of combination of both - survivor and on meds.

But there are other drugs such as Epzicom, Reyataz and others that in the literature provided explain possible side-effects as being Lipoatrophy OR lipodystrophy. 

My response to the intial question is that AIDS drugs are very powerful and toxic.  The body handles these chemicals in a variety of ways and some people seem to be more sensitive to reactions than others.  For instance, my stopping taking Zerit over 4 years ago has not lessened the impact of facial wasting or loosing fat on my particular rear end.  In fact, my doctor has said that stopping these medications is no guarantee that the lipoatrophy will not continue.   

I had facial injections 3 years ago - supposedly permanent that binds with the collagen under the skin.   And today, my face is probably in need of a few more visits - not for touch ups - but for a complete new procedure.   The permanent solution is probably there, but over time, my face has reverted back to some of the lipoatrophy state that was present back then.   So, yes, procedures can help, but while the injection material lasts forever, the fullness in appearance may not!

So, my take on Lipo is that it may or may not rear (excuse the pun) its ugly head.  However, we are all still guinea pigs with these drugs and still do not understand or know the full long-term ramifications of any of them. 

[pozattitude]

yep everyone is different, my story is

no Fat loss (lipoatrophy) of any kind, no hump, no skinny face nor legs, no belly and I still have my bubble butt.

now for side effects....i feel nausea every single day of my life.  It is not that bad,  maybe I just got used to it or is it that I learned how to manage the nausea? anyway, the nausea is still part of my everyday life.  I also have dangerously high cholesterol (and it is 100% due to Kaletra, as my cholesterol was extremely low all my life and there is no history of high cholesterol in my family).  To top it, I have peripheral neuropathy on my fingers and feet and 1/2 the energy I should have.

OK, so I've been on meds for 10yrs now and I've taken Zerit, Epivir, AZT, Sustiva and now on  Videx, Ziagen, Kaletra.

having said all this, I feel I am a lucky person.  My meds work very well fighting the HIV and I don't have the horrible side effects some of my friends have.

the bottom line is that although there are some characteristics that are more common than others, everyone reacts differently.

Rich
(who worships the medicine he takes to fight off the side effects of HIV meds)

[Bucko]

as some of you may know, my boyfriend is hiv positive.
he hasnt started medication yet, and it doing great, but i guess in about 6 months or so( you never know) . he may have to start.
I have 2 questions.
1) i know this varies from person to person, but are hiv meds hard to tolerate , how many of you feel badly on a daily basis because of the meds ?
2) what is the porcentage of people taking the meds that experience facial wasting? i asked his doctor and she said that almost everyone does.

The side effects eventually dissipate, or at least they did for me.

I've experienced a mild amount of facial wasting. It's changed my face, for sure, but it's actually rather subtle and the compliments haven't slowed down much (if any).

Hope that helps-

Brent
(Who is pretty open about most things)

[aztecan]

Well, let's see.

Yes, I have some lipoatrophy. This year I developed some lipohypertrophy - a buffalo hump. Actually, its not that big, maybe I should call it a "humpette."

I have been on meds for more than 11 years and have been positive for at least 22 years. I have seen people who developed lipoatrophy without ever having been on meds. Never saw them get a hump, though.

There are some meds I could not tolerate, even after taking them for more than two months: Saquinavir and Sustiva.

There are meds I had initial side effects from, i.e. nausea and diarrhea, but that no longer cause those problems: AZT, Epivir. (Although AZT may continue to play a part in the lipodystrophy.)

There are meds I take that, so far, have caused me no side effects, not even nausea: Reyataz and Norvir. (Again, the Norvir could contribute to more lipo issues.)

I am also getting older and, frankly, my days of looking like Brad Pitt are numbered. (The first one who makes a snide remark gets their Birthday Swats with my Cat-O-Nine-Tails!)

So, I have decided two things. One - I am extremely happy to still be breathing, a situation that might not be possible without these meds. Two, I will wear my hump proudly, along with the skinny legs, etc. Like gray hair, they are a sign I am still in the fight. My battle scars, if you will.

The new meds may not cause many of the lipo issues now seen. We'll know more in another decade or so.

To answer your questions, Peter, aside from the two I couldn't tolerate, I have no problems with my meds once the initial period of side effects had worn off. I sometimes find myself with diarrhea, but usually I can trace that back to a slip in my gluten-free diet rather than the meds.

And, yes, I have some facial wasting. But, that's OK too. It isn't so bad I feel discouraged or deformed. I'll let you in on another secret about the lipo. I have people at the gym asking me what diet I use to keep my fat ratio so low. I look "cut" to them, they say.

I tell them its the AIDS diet plan. (For those who remember, there was an actual diet plan called that, but it was spelled AYDS.)

HUGS,

Mark

[AlanBama]

I am extremely happy to still be breathing, a situation that might not be possible without these meds. Two, I will wear my hump proudly, along with the skinny legs, etc. Like gray hair, they are a sign I am still in the fight. My battle scars, if you will.

Very well said, Mark!

[ndrew]

Hi,

Been taking Atripla since October.  No wasting issues.  Feel great and undetectable, however I do get high at night (especially if I eat, which is typical with Sustiva), but I actually like it : )  No weird/vivid dreams, probably because I am weird to begin with.

Drew

[StrongGuy]

As usual Newt said it the best...

I had some sides onn earlier combos, butthey were manageable. On my curent regiment I have none (and I've been on it for a few years now). No facial wasting, as the regiment I am on is very low risk for that side.

[Miss Philicia]

Facial wasting often takes YEARS to become noticeable -- it took me a good 6 years of those early line HIV meds for it to become apparent, and another 2 for it to be extremely noticeable to other people..  I don't see how anyone, be they a doctor or someone on this board, can make any claims about the newer drugs with absolute certainty.  I certainly HOPE they don't cause facial wasting, but really we won't know for another few years.  Hell, just five years ago they couldn't even safely say which early HIV meds from the 90's were actually causing this. 

Color me skeptical.

[giorgio76]

Well... i started Kaletra + Truvada 3 months ago... a hard compo and i have no side effects at all... with or without food. I have notice that if i have a bad day... (junk food, or more than 2-3 drinks...) i have a bit diarrhea, but nothing to worry about.

I had asked my doctor ( one of the best in my country) about lipo, and she had said that... they are not sure if meds cause lipo or the virus itself. Of course the problem was more common in people who were on d4t and azt, and especially to those who were well tolerated on these meds.

I haven't seen any young people develop lipo . Does age make a difference?

And something else... we don't take aspirin or vitamines ... we take a hard stuff, everyday...

[indyguy]

I have also gained weight. No wasting yet. Wrinkles from worry but no wasting.

[hart]

I've had trouble with AZT making me sick.  I took it for 3-4 years in the very early days, and was nauseated all the time.  I just thought it was the HIV, never thought it could be the meds!  Now I only have trouble with Norvir if I take it on an empty stomach.  I take all my meds after eating something, usually a meal, and I generally have no trouble.

I have both lipoatrophy and lipohypertrophy... my legs, butt and arms have lost all their fat, and my upper body, especially my back, belly and buffalo hump, and fat pad in my pubic area.  Plus I have facial lipoatrophy, my face is slowly losing fat, noticeable to me, especially when I look at pictures, but strangely not so much when I look in the mirror.  I certainly have hyperlipidemia.  I'm sure there is some affect on the fat from the drugs, the facial lipoatrophy, buffalo hump, but I'm not sure about the fat on my back and belly, pubes, the hyperlipidemia etc. ... I feel that some of that has to be related to getting older.  I think there must be an action of HIV or the meds, or both, that speeds up the 'aging' of the metabolic processes of the body, so that what would normally happen, happens earlier and perhaps to a greater degree.

So quick answers to your questions:
1) depends on the person and the situations they are in, whether or not they are made sick by the medications.
2) I think there is a complex metabolic process that entails loosing and gaining fat in different areas of the body.  There are three interplaying components:  HIV/AIDS, MEDS, and AGE.

[Miss Philicia]

I began getting lipo at the age of 33, so I don't find the "aging" argument convincing in the least.  I will say that if you start getting lipo at a later age it will be emphasized somewhat, but I dare say it's still mostly meds.

I'm quite sure I've read articles attributing it partly to genetic make up as well, or a predisposition for it to happen.  Something like it's seen more in white males... I may be flaking on this fact though so don't hold me to that, and I'm too lazy right now to research it. 

[cokaine]

The answer to your question is - Only time will tell.

Everyone experiences meds differently just ask any of your girlfriends or sisters who are the birth control pill. lol.

I asked 2 different doctors, a nurse and a couple of HIV positive people who have lived with the disease for a number of years if they have experience facial or body wasting or if they believe I will confront it in the near or far future and they all seem to tell me it will most likely be less than those who took medication in the 80's and 90's. Looking ill is one of my biggest concerns besides getting ill but if I try not to think about it because I believe in the "law of attraction". If you think it will happen to you then it most likely will. We have no control over the way our bodies tolerate the meds over a long period of time. My advice is, keep a positive mind set and have FAITH that minimal side-effects will occur to you on meds. Having this type of mindset helped me have very little side-effects to Kaletra which is well-known to be difficult to tolerate. Good luck to your bf.

[Christine]

Hello,
Side effects are an individual thing. Personally, I have experienced pretty many. Generally, they would last about 2-4 weeks. Some never went away, so I had to discontinue the meds.

I was diagnosed in '93, and did not loose any noticeable weight until 2005. The past year, my face has looked pretty thin, but at this point I am just glad I am  able to get out of bed every morning, so I can deal with the weight loss.

Christine

[Oceanbeach]

Hey Peter,

I have been taking meds for 11 years.  When I started, I was taking 30 pills every day.  Times have been better and have been worse.  I have gone from throwing up every day, being so sick, standing to heat a can of something, and trying to eat it has been a problem.

Now, I take 3 pills per day, do feel crappy sometimes but feel like I am in better control.  My last labs showed a 133 increase in T-cells, still undetectable VL, some decent precentage but, my blood pressure was high.

Doctor made a point at that follow-up meeting... He said, when I started meds, the object was to keep me alive for lets say... 5 years.  Now there is 11 years and reason to believe I may reach "old age" (unless I get hit by a bus).  The trick is to be very careful around public transportation.

Facial wasting is becoming an issue with me.  Last year, I was asked to be on the local news channel for the 25 Years of AIDS show.  When I saw the tapeing, I recognized the clothes I wore, recognized my voice and the discussion on employment opportunities for people living with HIV in Sonoma County... I did not recognize my own face and wrote about it in the Lipodystrophy Forum.

Recently I was talking with our ADAP clerk.  He was on the same regimen as I was... His doc changed his prescriptions, he has no side effects, and his face is fiilling out nicely. 

I asked for what Danny was taking and can not because of all my years on meds, I have built up a resistance to one or more of the meds.  Outside of paying approximately $12,000 for three vials of Sulptura and refills as needed, there is not much which can be done.

With the loss of Title I funding in Sonoma County, there are many more pressing issues and needed services which are being cut in terms of HIV care for approximately 500 client/patients.  With our first cut this year from $1.6 million to $728,000 programs such as Complimentary Alternative Medicines, which include Chiropractic, Accupuntcure and Massage Therapys are already cut.  We can jot bitch about the loss of physical beauty when othere are on waiting lists for meds and services.  Now is a good time to begin looking at all possible services in your community.  There is an ASO Finder link at the front page of this site.  Have the best day
Michael

 

[GSOgymrat]

I've been on a variety of meds. Some the side effects go away and some don't. I'm currently on Reyataz, Norvir and Truvada and while it's the best combo yet I still have yellow eyes at times. I'm not complaining though. I was on Kaletra for years and almost never had a normal bowel movement.

I've got severe lipoatrophy and my partner has hump and dorsal fat. It varies from person to person.

[AustinWesley]

On the first, for me personally, apart from the odd day of Norvir nausea, no side effects. A few in the beginning, but minor.

On facial wasting, your doc should go read some papers.  This is related in almost all cases to d4T (Zerit) and AZT (Retrovir).

The d drugs (d4T and the discontinued ddC) plus AZT belong to a particular subclass of nucleosides and if you avoid these facial wasting is very very very unlikely. 

The other d drug, ddI (Videx) seems to behave differently.

It is of course difficult to tell for certain with the nucleosides since they are used in pairs, but it is well documented that the worst drugs are d4T and AZT, and other drugs are not generally connected to facial wasting.

Therefore I differ with the poster (2 posts) above on incidence. People starting on modern combos (ie no AZT, no d4T) almost never get facial fat loss.

Fat loss (lipoatrophy)

- matt

Hey Matt,

Thanks for posting this.  Pretty much what I understood from my doctor.

In response to the poster who started this thread.

I have no side effects from my meds whatsoever.   I'm on Sustiva/Truvada and feeling just fine now.   I haven't lost any weight at all.  I've been on them for just about 5 months and go back in August for new labs.  I anticipate they will be much improved because I definitely feel great.

A good attitude has a LOT to do with your health in my opinion.   

Wesley

[Dachshund]

I tend to agree with Philly about genetic makeup but then again it could just be the luck of the draw. (course I guess that would be genetic makeup) I see on a regular basis a group of HIV+ men at least a couple of times a year socially. Their backgrounds and times diagnosed vary from 20+ years to the present. I would say close to half of the group (75) appear to have visible signs of facial wasting. A smaller percentage with expanded necks and humps. Mind you this is all just my observation of a group that I see on a semiregular basis. The one common denominator we all seem to have (young and old) is the protruding belly. My advice to you...if it is important to you, enjoy your looks now while you have them, cuz aids or no aids they will eventually fade.

[GSOgymrat]

The one common denominator we all seem to have (young and old) is the protruding belly. My advice to you...if it is important to you, enjoy your looks now while you have them, cuz aids or no aids they will eventually fade.

I've managed to avoid any protruding belly. I think genetic make up, diet and exercise, and medication history all play a part in what you are going to look like years down the road.

[AustinWesley]

I tend to agree with Philly about genetic makeup but then again it could just be the luck of the draw. (course I guess that would be genetic makeup) I see on a regular basis a group of HIV+ men at least a couple of times a year socially. Their backgrounds and times diagnosed vary from 20+ years to the present. I would say close to half of the group (75) appear to have visible signs of facial wasting. A smaller percentage with expanded necks and humps. Mind you this is all just my observation of a group that I see on a semiregular basis. The one common denominator we all seem to have (young and old) is the protruding belly. My advice to you...if it is important to you, enjoy your looks now while you have them, cuz aids or no aids they will eventually fade.

This was interesting that you brought up personal observations from the group you belong to.   I belong to one of these as well here.  It seems to be some have the signs of AIDS, while others have no issue whatsoever.   I hadn't thought about that, but I suppose a few did have the belly while some are way thin and a bit gaunt looking.   

I suspect that people who use drugs like meth are accelerating the damage.   I've had a couple guys tell me they felt that it contributed to their lipo issues.   

Of the members of the group I belong to many are older so part of it could just be aging or those old harsh meds.   I hadn't really thought about it much, but I think I notice those signs more simply because it's a positive group.  If I met these folks on an individual basis I don't know that I would really pay any attention.

I still think genetics plays the biggest role.   It seems logical to me that proper diet and exercise are also important.

Wesley

[aztecan]

I think how people respond to the meds - and what side effects they have -  is influenced all of the above: Meds, genetics, longevity with the virus, aging, diet, exercise, nutrition, drug abuse, alcohol abuse, and the list goes on. All of these things affect how our bodies work and how we respond to medications.

Nobody really knows what responses the body will have to long-term use of the meds now available or of the newer drugs already being prescribed, or those coming down the pike. It is a crap shoot. Yes, some of the old, first-line drugs caused some serious side effects, but I still see people taking them with great results and without exhibiting the long-term side effects.

That's just the way it is. We will learn as we go, just as we have since the beginning of this pandemic.

I don't want to sound too Pollyannaish, but that is also what usually gives me hope, because I have seen first-hand how things have improved and continue to improve.

HUGS,

Mark

[mjmel]

Hello again, peterhelms and partner. So far, quite a variety of responses! Hope it has helped you to understand how each case has the ever common HIV virus yet each is as unique as the individual response(s). 
One of the risk of any meds is allergic reactions. This had not been mentioned so I'd like to touch on it. I have been on a couple of different regimes since starting AIDS meds in 1999. My doc would change drugs for one reason or another but not because they were failing--mostly for managing dosages better. Example: when combo pills are introduced on the market or a liquid goes to pill or capsule form.
But......once, I had an allergic reaction when doc switched me to Ziagen (abacavir). After 3 days of taking Ziagen a body rash appeared then went away on it's own. This started on a Friday. At first, I ignored the symptoms in an effort to give the drug a chance as each may or may not have unpleasant side effects that go away in relative short time. But this persisted and other stuff started to happen so I gave my doc a call after weekend of weird symptoms and ailments. By the time I could finally reach him by on Monday morning, the skin on my hands were cracking and bleeding and the proton pump in the stomach was pushing out so much acid I could not lay down so therefore I could not sleep unless sitting in a chair. I also had a severe sore throat.
I immediately went off the Ziagen and was placed on Steroids (prednisone) and Nexium and in three days I felt comfortable again. Allergic reactions are a BITCH.
They are not common. Normally not life threatening. Have a good understand of your meds through your doctor and your own research and your boyfriend should ask about a possible allergic reaction and have a number he can call, in such event.
xxx,
Mike