After 17 Years on HIV Meds, It's Still Hard to Gain Weight
Part of the Series Other Sides of HIV: People Taking HIV Meds Share Stories About Side Effects
December 10, 2013
I started meds back in 1996. They really did a number on my body. I was never sick from HIV; I volunteered for an HIV protocol. It was a triple combo; 3TC was one the other ones did not make it past the study. One was eight pills, three times a day; just the smell of that made me lose my cookies. I was working at the time and my coworker came in every day with a box of doughnuts and a bucket for me.
When I started meds my weight was 198 pounds; when I stopped working I was at 130. That was after almost a year of meds.
Some 17 years later I am at 150 pounds; it's hard to gain weight. Still looks like I have wasting syndrome. I get strange looks, people keep their distance, but I am still here and that is what counts.
Tested positive in 1985; to all those health care workers who said I could have only three years left: Well, HELLO!
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Read other stories in this series.
This article was provided by TheBody. It is a part of the publication Other Sides of HIV.
Comment by: Jim
Mon., Oct. 20, 2014 at 8:27 pm UTC
I was diagnosed in 2002 and was a bit depressed at the time due to a dysfunctional relationship I was in for 8 years leading up to that. I was in the poorest shape of my life weighing around 160 lbs, the only exercise i got was walking my dog and work. the meds I was on was Combivir and Viramune which i stayed on up until 2013. My savior was my neighbor that decided I should start juicing and starting to exercise in the gym 3 to 4 times a week no fail even on vacation. i gained weight to 200 lbs of muscle, before I decided that gee it would be better to be a bit lighter, which my body decided to make really hard when I changed over to a new drug Complera.
The Juice i make is a protein shake with Trader Joes Whey protein two scoops, Lactose milk and a Frozen Fruit I get from Walmart that has strawbery Mangos and pineapples. I add in blueberries for antioxidents. Plus water to keep it from being too thick. It taste great. Stay away from any protein mix with artificial sweetners.
Comment by: Edwin Barker
Fri., Jan. 17, 2014 at 10:41 pm UTC
I'm sorry about your weight issues. My problem is I have huge amounts of fat around my belly and man breast and I look like a twig in my arms and legs and face. The body image is as you said a psychological difficult thing to go out and face the world with everyday.
Comment by: Joe Brown
Tue., Jan. 7, 2014 at 10:53 pm UTC
Jim Delaney I have friends who look emaciated and I have friends who have crix belly's and backs. I started treatment in 95 immediately when pro-tease inhibitors came out for HIV and Hep C which I managed to clear the HEP. Have you tried to take megace, marinol? There are other drugs which increase your appetite in the benzo area even though doctors don't prescribe them for weight gain. Some weight loss comes for people naturally with age. Glad to see someone adress this stigma.
Comment by: Tom
Tue., Jan. 7, 2014 at 9:10 pm UTC
It would be easier to comment on this if you said whether you've been taking the same medications for the last 17 years. You say two drugs were discontinued, but you don't tell us what they were, or what, if anything, you took after that. If you want us to reflect on the affect of the medications you've been taking then you need to inform us what those medications are or were. Otherwise, it just sounds like you haven't been taking any medications for many years, so it would be no surprise that you're thinner. I was diagnosed in 1989 after several years already positive. At that time I was at around 160 pounds. I took AZT, DDC, DDI, and 3TC at various times in the following decade. I didn't get thinner, although I'd heard that that was a potential side effect of some medications. From 1999 I completely stopped medications for six years. Nowadays I've been on Atripla for 9 years and I feel great, and I weigh around 190 pounds (now 50, and 6 feet tall). Because of lack of information from you, I don't know if this could be an option for you. I'm assuming that your doctor would have recommended some kind of therapy for what you've described.
Comment by: Annie
Thu., Jan. 2, 2014 at 6:54 pm UTC
Hi, I'll tell you this I'm now 197 I was 145 . Now after meds for 6 yrs my arms legs, neck all thin can put two thumbs around thighs but my belly that's where it is. As a woman it bothers me yes but I'm catholic and I don't allow these things to bother me . As far as my health is good and I wake up everyday I know I must put up with whatever comes my way. I lift it all up to god . I'm content by doing this I don't worry or get stressed over it. Comon you're alive isn't that much better than worrying about how much you weigh and if you are too thin and your health is at risk there is something they can give you so don't let things stress you out . Live!!!
Comment by: T.C.
Thu., Jan. 2, 2014 at 3:47 pm UTC
For most of my life I've been on the thin side - and taking those early meds (since June 1992 for me) didn't help, although I have gained a few pounds in the past 22 years and now weigh 147. Not sure how long that will last with the new meds I'm now taking causing diarrhea. On top of just aging like everyone else, I'm concerned how the disease and all the meds have affected my body.
Comment by: Jim H.
(Fort Lauderdale, FL)
Wed., Dec. 18, 2013 at 10:12 am UTC
Hey Jim, Well hello to you too :-). Your experience was similar to mine and it's good to see someone acknowledging what that was/is like. I started meds in 1997 and those early cocktails (DDI/Videx- AZT - D4T/Stavudine) etc. really did a number on my body. By the end of 1999 I'd lost all of my subcutaneous fat and had what people referred to as "the look". It does make some people uncomfortable to see that but I see the badge of a fighter and a survivor.
Cheers to thriving and best regards from Florida. Jim
Comment by: NELSON R VERGEL
Tue., Dec. 17, 2013 at 10:37 pm UTC
You may want to talk to your doctor about testosterone plus nandrolone:
Men with small mid arm circumference aging with HIV had an increased risk of mortality:
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