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Author Topic: Weight gain on medication  (Read 2925 times)

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Offline Neon

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Weight gain on medication
« on: March 29, 2014, 02:32:20 PM »
Hi I was diagnosed positive in Sept 2013. At that point my VL was nearly 200,000 and CD4 550. Within a month or so my CD4 rose to 999 and without meds my VL had dropped to 25,000. I argued to start medication although my consultant was against this in principal. I won.

In Dec 2013 I started a combination of Rilpivirine (Edurant )/ Tenofovir Disporoxil and Emtricitabine (Truvada). In Feb my CD4 was just under 700 and my VL down to 500.

I have hated the side effects though. Tired, bloated stomach, bad gas and diarrhoea at times. It has impacted on my training and I really wasted expecting this. I have put on 9kg. This has made me feel really low about myself.

I stopped taking them about a week ago. If all meds cause side effects I really don't know how I feel about medication full stop. Is weight gain a side effect with all meds?

I'm not looking forward to telling them at clinic that I have stopped my meds. With my CD4 count as it is, will I see much difference if I stay med free??

Offline Jeff G

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Re: Weight gain on medication
« Reply #1 on: March 29, 2014, 02:44:06 PM »
Welcome to the forum . I will be blunt ... you need to decide if you can commit to meds before you start again . You cant wake up one day and decide without discussing a med change with your doctor and just quit or miss doses all the time . Not being adherent to your meds can cause and does cause resistance issues and you do not want that . Its better to stop cold turkey than hit or miss but either way you are going to have to commit to them or accept the consequences if you don't .

If you are serious about taking meds then let your doctor help you find the right combo for you or you may well not live to regret it . There are many of us here that were not fond of our meds and stopped taking them , some of are dead and some of are harmed for choosing to not take our meds correctly .

Im wishing you the best of luck and happy you found us .
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Offline zach

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Re: Weight gain on medication
« Reply #2 on: March 29, 2014, 02:48:51 PM »
No dude, don't just stop taking your meds, talk to your doc, work together to find an easier regimen. You are putting yourself at possible resistance issues.
I set into a downward spiral
Caught an illness that was literally viral
I heard some words of wisdom the other day
And they went in one ear and out the other one

I awoke from this beatific binge
With prismatic eyes, now lite is tinged
With all the vapors that the vile humans brew
Shining through the blight of you

Offline intaglio

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Re: Weight gain on medication
« Reply #3 on: March 29, 2014, 03:53:44 PM »
I had a lot of the problems you describe while I was on Truvada. My ID doc switched me to Epzicom and those problems went away.

You still have a lot of options as far as treatment combinations are concerned. Don't give up so easily.
Reality is frequently inaccurate.

Offline xinyuan

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  • Posts: 193
Re: Weight gain on medication
« Reply #4 on: March 29, 2014, 09:39:51 PM »
I was just mentioning the greater chance of developing viral resistance on Complera (riplivirine/ emtricitabine/ tenofovir) in another thread. Of all the meds to quit ...

If you develop resistance to one non-nucleoside reverse transcriptase inhibitor (NNRTI) like riplivirine, you have a chance to develop resistance to an entire class.

http://www.aidsmap.com/resources/treatmentsdirectory/drugs/Rilpivirine-iEduranti/page/1731269/

Offline mecch

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  • red pill? or blue pill?
Re: Weight gain on medication
« Reply #5 on: March 29, 2014, 10:24:51 PM »
Hi I was diagnosed positive in Sept 2013. At that point my VL was nearly 200,000 and CD4 550. Within a month or so my CD4 rose to 999 and without meds my VL had dropped to 25,000. I argued to start medication although my consultant was against this in principal. I won.

In Dec 2013 I started a combination of Rilpivirine (Edurant )/ Tenofovir Disporoxil and Emtricitabine (Truvada). In Feb my CD4 was just under 700 and my VL down to 500.

I have hated the side effects though. Tired, bloated stomach, bad gas and diarrhoea at times. It has impacted on my training and I really wasted expecting this. I have put on 9kg. This has made me feel really low about myself.

I stopped taking them about a week ago. If all meds cause side effects I really don't know how I feel about medication full stop. Is weight gain a side effect with all meds?

I'm not looking forward to telling them at clinic that I have stopped my meds. With my CD4 count as it is, will I see much difference if I stay med free??

1) We don't get to start and stop for petty annoyances like some kilos... Hello?  Try training with a destroyed immune system, thats what everyone gets eventually without treatment.

2) We do get to negotiate with our doctors to switch regimens, and in the meantime, to get treatment if possible to solve side effects.  It took me a few different combos before I found one that really does seem side effect free.

3) We can't predict how you will do off meds... Nobody can predict that for an individual. Why did you want to start?  Aren't the reasons still valid?  If you don't want to start - then get regular blood tests and wait until you are ready, or until the doc says you need to start, ready or not. 

There are ways to quit each different combo.  Your doctor will know them.  You didn't figure on that, did you?  You can't just stop like that on a whim.   Live and learn. 

Welcome to the forum by the way.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: Weight gain on medication
« Reply #6 on: March 30, 2014, 07:03:31 AM »
Welcome here!

I hope you will keep posting, because I hope you can maintain contact with this patient oriented ressource

If you post again here, I'll throw in some numbers that will make you feel better with regards to the ' I'm not looking forward to telling them at clinic' issue

I look forward to hear from you again

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline Neon

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  • Posts: 2
Re: Weight gain on medication
« Reply #7 on: March 30, 2014, 01:44:27 PM »
Thanks for the advice. I need to reflect on my commitment to taking medication. Perhaps there's some denial that I need to hit on the head.

Offline mecch

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  • red pill? or blue pill?
Re: Weight gain on medication
« Reply #8 on: March 30, 2014, 05:00:02 PM »
You met the diagnosis head on and argued for treatment soon after. So you're not in denial there.  What do you think you are denying?  Maybe we could hash it out a bit.

Please try hard not to judge the future by your crappy experience the first months on your combo.  Usually its possible to have a better result than you did. But it can take a while and a considerate doctor to really find the neutral treatment. 

Also try not to put onto HIV more than necessary.  All sorts of experiences can cause fatigue and weight gain - yeah being HIV+ or the first months of getting used to HAART.  But also depression, etc.  (Which of course might be related to being HIV+).

What I am saying is that it would be good to keep a frame of mind that some things are givens, mandatory, required in life, and you work around those things to build a quality of life.  Its not all HIV's fault, if life goes out of whack, though its common to feel that way.

If HIV treatment is a confirmed choice, and when it is anyway, eventually, mandatory, we just work around it to accommodate...  If you put on weight, figure out a way to lose it, that that actually works.  and so on. 

We all have to do this stuff and not only about living with HIV, about lots of other demands or encumbrances we have in life.
« Last Edit: March 30, 2014, 05:04:03 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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  • Posts: 1,361
Re: Weight gain on medication
« Reply #9 on: March 31, 2014, 09:48:26 AM »
Welcome back...

I've tried to find a way to ease your apprehension to tell people at the Clinic.

Why would you fear to go there ? Have you done something wrong ? ...
In fact, in managing this issue you did a lot of Good things.

Good things:
You got tested : Good
You handle the diagnosis OK : Good
You discussed meds with Doc : VERY Good
You pushed for meds : Good
You took your meds (non erratically) : Good
You decided to stop : it is Okay... You are not going to die to morrow
You are going to the Clinic : Good
You discuss things here as well : Good too

Most important in the 'Cascade' : enter and retain in care.

Well in my humble opinion, the one mistake your are doing is to state that you stopped drugs because of the weight gain. it makes you sounds frivolous. Diahreas and fatigue are conditions that the medical community can accept better

Have you read the Manufacturer Label for your drugs ?

Does it say anything like : you should not stop ?

Edurant labels says:
Patients should be informed that EDURANT is not a cure for HIV infection. Patients must stay on continuous HIV therapy to control HIV infection and decrease HIV-related illness

(IMHO : the label here, subtly addressed many issues, including erratic adherence, and is not specific enough about stops : it does not say Patients must stay on HIV therapy). If they had phrased it: Patients must not stop therapy, it would be clear: they did not (this is very arguable, but, if labels are not easy to understand...)

But apart from that very general statement it does not give enough of a clue that treatment cannot not be stopped, nor does it states how to stop.

Did Doc specifically said that you cannot stop ?
Did Doc explain how to stop ?

So what

- The label is not clear
- your doc was not clear

Then who is at fault ?
- You
- the manufacturer (and regulating agency FDA)
- Your Doc

If the people knowledgeable enough about No-Stop and about how-to-stop and do not warn you, then they are at fault : not you

Except for not reading the manufacturer label in detail and not seeking information on how to stop/switch safely (to avoid resistance, which is not that common in people who stop cold turkey...), your management of the issue has been very good thus far. It is not my preferred and I do not advocate stops

So the last thing you want to do is miss your appointments

That you should not do.

You want to manage... Then do it in a controlled environment

All this to encourage you to go to your appointments

Hope this helps

Eric
« Last Edit: March 31, 2014, 09:52:05 AM by eric48 »
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline RobbyR

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Re: Weight gain on medication
« Reply #10 on: April 02, 2014, 01:45:22 PM »
I've wondered this too. Before meds for years, I couldn't ever put on weight. I was tall & skinny & just couldn't gain. I started Atripla & put it on, although much of that was belly fat. I went from like 140 to 170 pounds in 3 years. Again that was deceiving because most of it was belly fat.
"I survived because I was tougher than anybody else".--Bette Davis

Atripla
2010-2015

Stribild
2015-2016

Genvoya
2016-

Offline mecch

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  • red pill? or blue pill?
Re: Weight gain on medication
« Reply #11 on: April 02, 2014, 05:44:31 PM »
I've wondered this too. Before meds for years, I couldn't ever put on weight. I was tall & skinny & just couldn't gain. I started Atripla & put it on, although much of that was belly fat. I went from like 140 to 170 pounds in 3 years. Again that was deceiving because most of it was belly fat.
How many of those years before antivirals, were you HIV+?
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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