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Author Topic: I am on Norvir + Truvada + Prezista, anyone on these meds with facial wasting?  (Read 11499 times)

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Offline mexguynyc

  • Member
  • Posts: 5
Dear All,

First of all, I would like to apologize to all of those who might think that I am sounding totally shallow in this post. I am actually grateful to be alive, have a job, have support when dealing with this and to be able to meet, even if only through the internet, amazing people like all of you, who actually take the time to answer the questions that I have asked since I found out I am positive.

I only started taking these medications 4 days ago. I take one NORVIR+two PREZISTA+ one TRUVADA. I got infected less than 7months ago. I am on the thin side, I have always been. I can eat anything I want and in any amount and still keep my very thin waste.

I used to be very happy with being thin, people have always make remarks about how lucky I am to be able to eat so much and to look as if I never ate anything. I am now very scared of being so thin. I wonder if the fact that I am so thin is going to be some kind of downfall. In particular, I am very scared all the side effects of these medications and  especially of face wasting, the loss of fat in the body and any other signs that will give me "the look".  Is there anyone out there who is experiencing lipodystrophy, or who knows more about this who could give me some information on this that could make me be better informed of the future? I would also appreciate any information on things that you think I should do to prevent any side effect. I don't smoke, do drugs and I hardly ever drink (so if I have to give it up, it will be extremely easy to do). Just for extra background, this "fear" came to my mind because I met someone who was very thin, started taking medications similar to mine 4 years ago and the loss of fat on his face is already rather obvious. If someone can share with me his experience with facial wasting and the loss of fat (muscle?) in the body, I will be very grateful.

Since I am newly infected and already on medication, I have decided to take the bull by the horns. I have started working out. I have only done cardio in the past but I am even afraid now of just doing cardio. Should I also try to lift weights? I wonder if anyone could give me any other ideas on what I could do to continue with the same quality of life as long as possible? (still reading the section on nutrition).

I want you all to know that I truly appreciate your comments and your ideas on this. I appreciate and value all of them.

Thanks in advance.

Best of luck for everyone!  :)
 

Offline Miss Philicia

  • Member
  • Posts: 24,211
  • celebrity poster, faker & poser
I'm on these exact same meds, and while I have lipo in my face, it all happened PREVIOUS to this regimen.  In fact, it all stems from stuff I took in the early/mid-90s that are no longer on the market and/or prescribed widely.  I have not experienced any further lipo issues while on this regimen.

Btw, you're confusing wasting issues with lipo issues.  If HIV meds cause lipo in someone its a cellular dysfunction, and no amount of gym time will reverse it.  Wasting, as in losing body weight, is a separate medical condition.  If anything you may experience some weight gain below your abdominal muscles, probably from Norvir.

I'd really try and relax.  This med regimen is one of the least likely to cause any lipo issues.  Frankly all of the people I personally know that have had lipo issues in their face and/or buttocks got it the same way I did -- from stuff like ddi that they too in the mid-90's.
"Iíve slept with enough men to know that Iím not gay"

Offline negativelypositivenow

  • member
  • Posts: 1
Hello Mexguynyc,

I recently got diagnosed and I am on the exact drug regimen as you were, Truvada+Prezista+Norvir.  I am 28 and have been on the thin side. I wanted to check with you if you saw any side effects with weight gain/loss or any other because of this drug regimen. Any information is greatly appreciated.

Thanks,
Positivelove

Dear All,

First of all, I would like to apologize to all of those who might think that I am sounding totally shallow in this post. I am actually grateful to be alive, have a job, have support when dealing with this and to be able to meet, even if only through the internet, amazing people like all of you, who actually take the time to answer the questions that I have asked since I found out I am positive.

I only started taking these medications 4 days ago. I take one NORVIR+two PREZISTA+ one TRUVADA. I got infected less than 7months ago. I am on the thin side, I have always been. I can eat anything I want and in any amount and still keep my very thin waste.

I used to be very happy with being thin, people have always make remarks about how lucky I am to be able to eat so much and to look as if I never ate anything. I am now very scared of being so thin. I wonder if the fact that I am so thin is going to be some kind of downfall. In particular, I am very scared all the side effects of these medications and  especially of face wasting, the loss of fat in the body and any other signs that will give me "the look".  Is there anyone out there who is experiencing lipodystrophy, or who knows more about this who could give me some information on this that could make me be better informed of the future? I would also appreciate any information on things that you think I should do to prevent any side effect. I don't smoke, do drugs and I hardly ever drink (so if I have to give it up, it will be extremely easy to do). Just for extra background, this "fear" came to my mind because I met someone who was very thin, started taking medications similar to mine 4 years ago and the loss of fat on his face is already rather obvious. If someone can share with me his experience with facial wasting and the loss of fat (muscle?) in the body, I will be very grateful.

Since I am newly infected and already on medication, I have decided to take the bull by the horns. I have started working out. I have only done cardio in the past but I am even afraid now of just doing cardio. Should I also try to lift weights? I wonder if anyone could give me any other ideas on what I could do to continue with the same quality of life as long as possible? (still reading the section on nutrition).

I want you all to know that I truly appreciate your comments and your ideas on this. I appreciate and value all of them.

Thanks in advance.

Best of luck for everyone!  :)

Offline mewithu

  • Member
  • Posts: 160
  • mewithu
 First , off they do not know for sure what causes wasting . The virus or the meds or a combination of the drugs and the medicine. Something that you need to discuss with a good Hiv DR.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline MASTERMAT

  • Member
  • Posts: 5
BEEN ON THAT MED... LOTS OF MEDS CAUSE FACIAL WASTING, AND OR LIPODISTROPHY... I HAVE BOTH.. IF U HAVE THE MONEY U CAN GO TO A GOOD COSMETIC SURGEON... CHECK HIM OR HER OUT FULLY AND THEIR WORK.. AND GET FILLERS FOR THE FACE THERE ARE DIFFERENT OPTIONS...ALSO I HAVE CHANGED MY HAIR STYLE AND GROWN A GOTEE/ BEARD TO HELP ALTER THE LOOK.. IT DOES WORK.. IF U DO STUFF THE CHANGE YOUR LOOK PEOPLE WON'T NOTICE... AND I THINK WE NOTICE THINGS THAT OTHER PEOPLE DON'T...REMEMBER WE ARE ALL AGING AND I THINK WE FOCUS ON CHANGES TO OUR BODIES TO MUCH... WHAT WE SEE ON TV  ARE NOT REAL PEOPLE.. THEY ARE THE RARE FEW AND THEY HAVE LOTS OF MAKEUP ON... IF U DRESS WELL AND INTERACT WELL WITH PEOPLE THEN U WILL BE POPULAR... PEOPLE LOVE ME AS I AM... ALSO I WEAR A HOODIE DOWN TO HIDE MY  HUMP.....

Offline bubba53

  • Member
  • Posts: 81
Hi,I have been on this regiment for quite some time,but experienced the opposite,weight gain,lots of fat around my breasts,under my arms and around my back.everybodys different,so don't worry till you have to,you may have no side affects at all, stay well !!

Offline Oceanbeach

  • Member
  • Posts: 3,565
I am currently on Norvir, Truvada and Presista, a recent change of medications with 1st labs due in a week or so.  My facial wasting began in the past 7 years but my body weight dropped from 155lbs. to 130 lbs. in 1996 when I was admitted into the AIDS ward at St. Mary's, (Long Beach).  In 16 years of eating everything in site, I currently weigh 140 lbs.  Went to a Nutritionist at UCSF recently with a complete list of foods in my diet to find, I am eating a healthy, balanced diet and should eat more.

Over the past few years, I have had an increasing lack of mobility.  At a small non-profit where I had been receiving health care, they sent me for an MRI and an EKG, couldn't find anything wrong so, they referred me to Physical Therapy.  My Therapist knew nothing of AIDS or PN and I was recommended to buy a gym membership.  There was no gym in the entire county at that time.

In recent years in another clinic, it was found I had PN, Osteopenia and Chronic Leg Syndrome and sent for Physical Therapy (same Medical Center, different facility).  We made some improvement, they recommended a gym membership and there wasn't a gym within 25 miles.  Insurances were used up.

Since I moved to SF, last year with a new HIV Provider at UCSF referred me to the Physical Therapy Department at the new Mission Bay Campus.  Got off the Muni for my first appointment last year, and fell (have a history of falling through the past two PT Depts.)  Fell again in front of the new building located at the back of the campus.

My new Therapist was trained for both aging and HIV patients, she put me on a daily, at home exercise program and got a cane.  Moving my healthcare back to a Title I EMA is the best thing I have done in years.  I am healthy, mobile, and living in a happy place.  Now, if I could just get Medicare to pay my Sculptra charges so the Doctor could finish his work, I would be a happy camper.   ;D  Have the best day
Michael

Offline bubba53

  • Member
  • Posts: 81
Hi Michael,Good luck with your med change,I gained weight on that combo,hope you do the same and get strong again ! What meds were you on previously ? I was diagnosed in 95 and also lost all my fat,Those drugs were harsh to say the least.Stay Well,Wade

Offline NY2011

  • Member
  • Posts: 141
I started with that regimen after being diagnosed during acute infection.  It got my viral load from over 500 k to undetectable quick, but it also did a number on my stomach. GI issues almost every day. My dr said it was probably the Protease inhibitor, prezista.  I switched after about three months to atripla, and things are alot better. I still notice dark circles around my eyes in the morning, but they go away after being vertical for a few minutes and after eating bkfast. Protease inhibitors get a bad rap when it comes to facial lipo, but when you read more closely, all drugs have at one time or another been attributed to causing facial wasting.  Recruit a close friend or family member to take notice of your face, or record a monthly video blog to monitor facial features.  Ive done both.  So far, im okay.
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline Oceanbeach

  • Member
  • Posts: 3,565
Hi Michael,Good luck with your med change,I gained weight on that combo,hope you do the same and get strong again ! What meds were you on previously ? I was diagnosed in 95 and also lost all my fat,Those drugs were harsh to say the least.Stay Well,Wade

Hey Wade,

I was on Sustiva since 1998 and my VL went from 36,000 to undetectable and remained so for many years.  At one point I was taking Trizivir but within the past year, my viral load went from undetectable to I think 250,000.  I was switched to Atripla (very briefly), but in 17 years, I have developed resistance to many of the currently available medications.  If the Norvir, Truvada, Presista combo does not perform as expected, there are a couple of other combinations that may work until there is something new.

I took Norvir early in my treatment.  Back then, you took 6 Norvir, three times each day and the patient was to drink an entire large glass of water with each dosage, and the pill form had to be refrigerated.  My Case Manager bought and delivered a used one with a crew but... I had to drink 3 large glasses of L.A. water daily and to this day, I have a mental issue with tap water.  I don't feel any side effects of the Norvir, I take now.  I prefer to take all medications at bedtime and with no food requirement.  But that's just me being me.   

The Positive 360 Clinic at UCSF specializes in the aging HIV population and the services are remarkable.  Both my current Provider and my past Provider agree that I will live to the average age for Caucasian male and die of a heart attack because of the national averages in that peer group.

Having favored the small locally owned and operated Pharmacy with HIV savvy, the change was made to one of the major chains located on Market Street, in the Financial District.  They have an identical store a block away.  Their computer network gets refill authorizations and calls my phone when they are ready and daily until the melds are picked up.  I go there once a month for a few minutes, the Pharmacist and her Tech Staff recognize me and this is in a city with almost 3/4 million inhabitants and the millions of tourists every day.  I am impressed with the choice for Walgreen's.   8)  Have the best day
Michael

Offline Rockin

  • Member
  • Posts: 494
I was on a similar combo as this but changed the Reyataz (Atazanavir) for Fozamprenavir because of jaundice.

Last weekend I visited my grandmother and she said my face looked a little thinner. And today I had to take some pictures for documents and I did think my face looked a bit thinner, even though my general body weight is the same as it ever was. I don't think I'm having lipo issues, my belly and my butt look the same.

But I got a bit worried about my face. Could this be from all the months on Reyataz or from the just-switched Fozamprenavir?

 


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