POZ Community Forums
Main Forums => Living With HIV => Topic started by: PLWASouthCarolina on January 16, 2018, 04:39:25 pm
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After problems with Triumeq leading to extreme weight gain and pre-diabetes, I’m preparing to consult with a law firm to initiate a lawsuit against the makers. If anyone else is interested in joining such a suit after it has been established, please touch base with me.
Thanks.
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Hi
Welcome to the forum.
Sorry to hear about the prediabetes, and truly hope you are working on reversing this to prevent diabetes of developing with your doctor. I wish you all the best with that.
Must say that first post here, very little details and trying to recruit people for a class action lawsuit ... It is customary for new members to introduce themselves to the forum in a "introduction" thread of sorts. No mater I have moved your thread so it can act as that. The lawsuit is an idea that personally I'm struggling to get my head around or be supportive about if i am honest. It prehaps does not help that so very little detail in your first post.
What do you mean with weight gain? What part of the medication are you linking it to and why? Not being funny but if you thought this was causing unwanted weight gain why did you not switch? Why did you stay on it as long as you did and on that note is this the first medication you were taking or is it you switched from something to this and why the switch in that case?
To be frank some additional gain can happen, and its included on package inserts as well. Better fat than dead is my take on things. The treat all recommendations are because the benefits by far and large outweigh any issues. Also large gains in weight is not a common issue or major concern with modern meds, we simply don't face the same issues from what was a common side effects of easier generation of antiretrovirals but changes in body fat, can happen for a few.
I gained weight when starting treatment, mostly healthy as I was simply too skinny from untreated HIV and that is to be expected, of course ageing plays a role with me as well being middle-aged means adjusting my diet is needed and definitely if i want to avoid diabetes. I already cut out sugar and drink but the move more, eat less approach in my case is needed as I can now add weight too easy.
Not specifically but generally speaking i can't help but think drug companies are stuck between a hard place and a rock, don't produce & release treatments with less side effects get sued, don't do it quickly enough get sued or accused of holding back and finally release the product under medical supervision and you still get sued if someone experiences a side effect you warned about... :o
Anyhow welcome to the forum.
Jim
https://www.poz.com/basics/hiv-basics/changes-face-body-lipodystrophy-wasting
http://www.aidsmap.com/Weight-gain-after-starting-ART-predicts-survival/page/1438184/
http://www.catie.ca/en/practical-guides/hiv-drug-side-effects/3-body-changes
https://us.tivicay.com/
https://www.poz.com/basics/hiv-basics/hiv-nutrition
https://www.poz.com/basics/hiv-basics/hiv-aging
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I'm not on Triumeq, although I am on one of the components (Dolutegravir). I have put weight on since diagnosis, and am pre-diabetic.
I don't blame that on the meds though. The meds stopped my body fighting a rampaging virus and allowed my metabolism to return to normal, which meant I started gaining weight, and unfortunately at my age (40s) that weight gain, coupled with a fairly sedentary lifestyle can push one towards pre-diabetes.
I can't comment on your specific case, or if you have rock-solid scientific evidence that the meds directly caused weight gain or pre-diabetes, but I would urge you to consider what meds were like not that many years ago, where side-effects were horrible and in many cases permanent but were tolerated due to the one amazing side effect they brought (not dying). Before the mid-90s, there were no drug combos to contain the virus at all. That really isn't that long ago, and obviously many many people died of the condition.
So, my view is that pushing a class action against a drug company for side-effects which can be addressed by the individual seems somewhat petty compared to the good they are doing and the ease in which they allow people to live normal lives nowadays. I'm also uneasy that any costs associated with defending such a case could impact research or push the cost of drugs up even higher.
All that said, I don't have the context regarding your situation or knowledge of the evidence you have, so I may be totally off base.
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Welcome fellow South Caolinian! Whereabouts in the state are you? I live up here in the top of the state just south of Charlotte.
Why did you stay on it as long as you did and on that note is this the first medication you were taking or is it you switched from something to this and why the switch in that case?
In the early days, as we were going through an array of those first meds, the rule of thumb - especially if you could tolerate your regimen, whatever it was - was to not fix it, if it wasn't broke. But these days, people shouldn't hesitate to switch meds to get the right regimen for them. Two yrs ago, after 25 yrs of varying meds, I switched to something "new". For me it was a really hard to break my old thought habits about sticking with what barely worked; but heck, all the new kids are getting cool new meds with no sides, why couldn't I have that too?! So, I just marked two years with zero side-effects for the first time in decades. :D
I would urge you to consider what meds were like not that many years ago, where side-effects were horrible and in many cases permanent but were tolerated due to the one amazing side effect they brought (not dying).
being diagnosed when there was only AZT, I've always accepted the side effects as just something to deal with. I certainly didn't appreciate throwing up 6-30 days a month for 20 yrs; but it sure beat the option of not having meds and dying.
Not specifically but generally speaking i can't help but think drug companies are stuck between a hard place and a rock, don't produce & release treatments with less side effects get sued, don't do it quickly enough get sued or accused of holding back and finally release the product under medical supervision and you still get sued if someone experiences a side effect you warned about
"don't do it quickly enough get sued"
don't do it quickly enough and people die. Been there, done that; not fun.
Sometimes my clinic has nursing interns sit in on our CAB (client advisory board) meetings. (the ryan white care act has always had CABs as a part of every provider's obligations; but no one ever enforced it. However HRSA is now pressing providers to get on the stick and help get clients involved in this advisory role). I enjoy talking about the history of the epidemic to these new-to-the-system health care providers and highlighting the positive things that have happened through the years - one being the fast-tracking of drug trials we all enjoy now thanks to a bunch of intrepid, determined PLWHA activists a few decades ago.
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In the early days, as we were going through an array of those first meds, the rule of thumb - especially if you could tolerate your regimen, whatever it was - was to not fix it, if it wasn't broke. But these days, people shouldn't hesitate to switch meds to get the right regimen for them.
Exactly. Asides for settling time prehaps, hanging onto a medication until you are not feeling well is simply not needed. Nobody should have to manage major issues with modern meds and there are a wide range of possible combinations available. That said checking with a doctor for any underlining issues is advisable.
Look I did a few months with Truvada, it works for millions of people no major issues at all but the that combo nearly ended me, I was the rare exception and hence i switched. No drama needed.
"don't do it quickly enough get sued"
don't do it quickly enough and people die. Been there, done that; not fun.
I enjoy talking about the history of the epidemic to these new-to-the-system health care providers and highlighting the positive things that have happened through the years - one being the fast-tracking of drug trials we all enjoy now thanks to a bunch of intrepid, determined PLWHA activists a few decades ago.
Very true, and anyone on treatment today should be thankful for the push made back in the day and continued push for fast-tracking.
Jim
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After problems with Triumeq leading to extreme weight gain and pre-diabetes, I’m preparing to consult with a law firm to initiate a lawsuit against the makers. If anyone else is interested in joining such a suit after it has been established, please touch base with me.
Thanks.
I lived through those gut wrenching years the same as Leatherman and we were damned grateful for every new drug that came along no matter how sick it made you. It's bullshit like what you're proposing that slows down the FDA from approving new treatments on the horizon, do a med switch if necessary and count your blessings.
Wade
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Agree with Jim, Leatherman, and Wade. I also lived through those awful early days when options were few. Aside from body fat re-distribution, I received Diabetes over 20 years ago as a parting gift after using Crixivan. Been able to manage it so far.
(https://i.imgur.com/J3h7rou.png)
Back then I said: "I'll take Life 2+ Years for the Win Alex!"
Now going into 34 Years HIV Positive.
Best,
OT
P.S. on the B.S. The Bull should be coming out of the toilet stall shortly. ;)
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PLWASouthCarolina
1) welcome here
2) please clarify if you have any feedback from any doctor that your suspicions are true. Or, have you seen any scientific reports on this. Or, do you know ANYONE who has reported the same thing.
3) I am on this combo and will see my specialist at Geneva Switzerland University and Hospital next week. I will ask about your worry about these two "casual" side effects, and we can see what she says, for example if she has ever heard of such a concern.
She is new. The doc who put me on it just retired. He put me on it last year really really encouraging me to switch from Isentress. I don't think he would push me off the new one to the even newer one Triumeq unless he was confident as a doctor "to do no harm."
best!
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Nice post, with no real facts to back it up, if you want to mess things up for others on HIV meds, think of the consequences of your actions , so you want everyone to sue the drug companies who have saved our lives, we all know the risks of side effects, if you wish to take a lawsuit go ahead on your own, the world is full of witch hunts.
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I cannot support such an action. Saw too many friends die in the 1980s and early 90s. They would have loved to gain weight or get diabetes.
There are plenty of other drugs, switch. Move on.
And don't waste anymore oxygen here with your class action bs....
Cheers.
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Isn't that rather like biting the hand that feeds you. Sue the drugs company, drugs get taken off the market and we all go back to the dark ages of the 80's and 90's.
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Where's your proof? Where's the scientific evidence that there's even a link? No decent lawyer will take this case without any evidence.
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before anyone else piles on, I would like to point out that the OP hasn't been back since posting this one post and that's been nearly a week now.
When this was originally posted, I had suspicions that we were being trolled (the giveaway was in the screen name. no one uses "PLWA" anymore, especially not a newbie. Few people add their state in their screen name, and no one spells out such a long state name. not to mention that no one sues for known side effects) However, since I'm a PLWH advocate in SC, I thought I'd reply to see if I could help if the situation was real
Quite frankly, there's little else anyone can add and I suggest we hold off on any more comments until PLWAinSC returns.
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Where's your proof? Where's the scientific evidence that there's even a link? No decent lawyer will take this case without any evidence.
There is actually proof recently that people switching from Atripla to Triumeq gained weight specifically abdominal fat. It is is attributed to integrase inhibitors
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Yeah its also a side effect of eating ... or so I've been told.
Look the study does not prove the OP gained weight because of his meds and even if he did what the hell was he doing staying on this med?
Its on the label of the drug as possible side effect, and rather fat than dead. The OP gained weight if it was to a point that it was causing problems than work with their doctor and switch if needed.
Jim
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yeah I think leatherman is right and I doubt he will return.
No lawyer would take this on, it would be a futile exercise if someone did and could only do more harm than good.
I'm sure there are people out there who are mad at some of this kind of potential side effect (if it is directly caused by the drug, or through re-balancing peoples metabolisms) but frankly they just need a reality check, not to mention a history lesson.
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I'm on Triumeq, I've got prediabetic numbers, I'm overweight.. I wouldn't sue over these "side effects" but thinking of sueing the baker who made that donut I had this morning.
(https://media-cdn.tripadvisor.com/media/photo-s/07/5d/0e/a9/singing-donut.jpg)
Without those arv's I wouldn't even had had the opportunity.
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Those donuts look good. What one was the best?
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Those donuts look good. What one was the best?
That pic is from the internet's but I did have a raspberry glazed and a maple bacon this morning with my coffee.. didn't think of taking a photo though😐.
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The left one in the second row looks like a really messy ashtray... and i can't unsee it now :D
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There is actually proof recently that people switching from Atripla to Triumeq gained weight specifically abdominal fat. It is is attributed to integrase inhibitors
First, a study of that kind doesn't show what you conclusion states. How do we know that it's not the other ingredients in Triumeq. And where is the control group for comparison? This is why when someone asks for studies, it's nice to provide links.
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Here you go
http://www.thebodypro.com/content/80687/weight-gain-when-switching-from-efavirenz-to-an-in.html
Virally suppressed people who swapped an efavirenz (Sustiva, Stocrin) regimen for one based on an integrase inhibitor (INI) gained significantly more weight over 18 months than those who stayed with efavirenz or switched to a protease inhibitor (PI), according to results of a single-center retrospective analysis. People switching to single-tablet dolutegravir/abacavir/lamivudine (DTG/ABC/3TC, Triumeq) gained the most weight over 18 months, an average of 5.3 kg.
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Thanks for posting the link and I think you had a thread on this finding
https://forums.poz.com/index.php?topic=67982.msg735555#msg735555
Some weight gain was observed but the conclusion was more study is needed, and getting back to the OP's posting it does not prove the OP gained weight because of this or excuses that he is taking this med under medical supervision and if experiencing problems can switch.
Jim
After 18 months, those who switched to an integrase inhibitor–based regimen gained an average 6.38 pounds versus 1.98 pounds among those who stayed on Atripla. There was no statistically significant difference between the average weight gained on a protease inhibitor–based regimen (1.54 pounds) compared with that gained on Atripla, meaning any apparent difference on that count may have been driven by chance.
Those who switched to the integrase inhibitor–based Triumeq (dolutegravir/abacavir/lamivudine) gained more weight (11.66 pounds) than those who switched to regimens based on the integrase inhibitors Isentress (raltegravir) or Vitekta (elvitegravir) (6.16 pounds), but this difference was not statistically significant, meaning it could have been driven by chance.
Those who switched to an integrase inhibitor–based regimen saw their average hemoglobin A1c, a marker for diabetes, rise from an average 6.4 percent to 6.5 percent. However, this shift was also not statistically significant.
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As a MOD note:
I do not think the OP will be back as I also had two spam emails from his address so all in all if he is not back after the weekend I think we might lock the thread and leave it to rest.
This does not mean if someone wants to discuss the topic they can't as they can but by opening a separate thread from weekend onwards. I just have to be mindful of who opened the topic and original direction.
Jim