den2542 - Starting Genvoya

[den2542]

I wanted to know how your Genvoya is going.  Originally started me on Sustiva/Combivir for about 6 years, then Atripla about six years, and now they want to start me on Genvoya. Never had a prob with any combo, always adhered to it 100%. Each time they want the change, they said it was because the newest one they wanted me on was the better one and the older one was not as good. So here we go again. I mean with Sustiva combivir it made me tired and sluggish, Atripla made me feel dizzy, and so now I look at Genvoya and I am hearing digestion probs and diarrhea. What's your take?

Doc recommended me take that because he said it was better than Atripla. Been on Atripla for 6 years and before that Sustiva/Combivir for total of 12 years, all 100% compliant and UD and just humming right along. Just sort of wondering about the side effects and if they go away for the Genvoya. I mean I expect side effects but not to the extreme that I am not able to function.

[Jim Allen]

Hi

Welcome to the forum.

Ill be honest other than a few days perhaps of you body adjusting you should not be expecting any problems at all when you do switch to Genvoya.  Now if you look around you will also find someone who does have a problem, same can be said for aspirin millions take it daily a few can't, it does not mean anything.

But in anycase don't take my word for it, if you are unsure speak to your doctor and if I am honest your doctor should have also explained this to you when dicussing the new therapy so if any doubt ask them.

Also I merged your posts of sorts and removed them from the other threads
Best to ask your own concerns and questions in your own thread and not to hijack or piggyback in other people topics/threads.

Jim

https://www.poz.com/drug/genvoya

[harleymc]

If you get side effects that affect your quality of life you can change back. It's that simple.

[Mightysure]

I went on Genvoya from Stribild, so they're essentially the same so there weren't any side effects.  When I started Stribild there was a bit of nausea and gas for about a week or so, but that was it.
Since you're switching from Atripla, there's a two-drug difference (some would say only one) so it may not be as bad for you.  I've heard good things from people who've gone to Genvoya from Atripla, so I think you'll be fine.

[den2542]

Thank you Mightysure. I appreciate your comments.

[Wade]

Hi, I have been on many combos through the years and switched to Genvoya about a year ago. It is probably the easiest med I have ever taken, the only problem I had was remembering to eat as it must be taken with food.

Wade

[Grasshopper]

Hi, I have been on many combos through the years and switched to Genvoya about a year ago. It is probably the easiest med I have ever taken, the only problem I had was remembering to eat as it must be taken with food.

Wade

I totally agree.

Started with AZT in 1992. Also many different combos. The previous one was Stribild. Since past April 1st on Genvoya. It's like popping a multivitamin pill.....NO side effect whatsover. Dinner time is pill time for me. Genvoya a gift from heaven.

[harleymc]

Hi Grasshopper, good to see another AZT veteran on here. I get bored with people telling me that  anyone who ever was on AZT is dead.

[leatherman]

tots off-topic  sorry Genvoya-users 

Hi Grasshopper, good to see another AZT veteran on here. I get bored with people telling me that  anyone who ever was on AZT is dead.

i was just talking to someone about this the other day. I, too, took AZT in 92-93 (9 months). and I realized in the discussion that I had taken 4 100-mg pills 6 times a day for a total of 2400 mg a day of AZT and I had actually lived through it.

2400 a day X 30 days X 9 months = 648,000 mg and that's a lot of AZT 

after 18 other meds, just a little over a year ago, I switched to Isentress/Prezcobix and couldn't be happier after 23 yrs of meds.

[Wade]

Hi Grasshopper, good to see another AZT veteran on here. I get bored with people telling me that  anyone who ever was on AZT is dead.

I was on AZT, and plenty of it too....and I'm not dead either

[giomanach]

I got started on Genvoya after I was diagnosed. Yeah, I seem to have some issues with my gut. But it is manageable. I am currently week 3 into the treatment and I seem fine so far. Not sure about the potential long term effect though.

[WowThatWasLifeChanging]

I switched from Truvada/Isentress to Genvoya a week or so ago. The only side effect I had that I noticed was bad headaches. They have since stopped. I have a horrible appetite and when my Infectious Disease doctor "encouraged" me to change to this med he assured me that even though it says take with food that it is not necessary. Guess we will see at my next lab. Also, I never had problems with previous meds but similar am told this is new etc. I usually say no because it makes no difference to swallow 2 pills once a day or one once a day or 3 twice a day but this time he got me to agree by telling me that Genvoya has less effects on liver and bones so less potential for long term effects there with osteoporosis, etc. #hopeful

[leatherman]

he assured me that even though it says take with food that it is not necessary

http://www.gilead.com/~/media/files/pdfs/medicines/hiv/genvoya/genvoya_pi.pdf
Throughout the package insert it states that Genvoya needs to be taken with food. Genvoya results were calculated on light meal=~400 kcal, 20% fat to high fat meal=~800 kcal, 50% fat.  Food absorption changes the amount of medication absorption so without taking this med with the required calories you risk not getting the right amount of medication needed against HIV. This could lead to increased viral load, illness, and resistance to medications.

Your doctor has no right to assure you that taking a medication improperly will result in successful treatment.

[den2542]

Dear Forum. First time posting and not sure if I'm doing it right. I have a question. I am being switched from Atripla to Genvoya. CD4 is 473 and UD. Poz since 93. My past combos were Combivir/Sustiva then Atripla. Only started meds in 2002. Am also on Fortesta testosterone. I heard Atripla has a protection for low HDL but Genvoya can cause LDL and triglycerides to rise. Has anyone had this issue? Also looking to raise my HDL and would like to know how to do so. My HDL is 20 and LDL is low and together LDL, HDL and Triglycerides are at or below 150. I do not smoke bc smoking raises LDL and Triglycerides. Please advise me.  Please share. Please forgive if I didn't post this right.

[Jim Allen]

I see the switch has not happen yet than.

Have you discussed the concern with your doctor? Anyhow sure Genvoya can cause LDL levels to rise. Does not mean it will for you or will to a level of any concern.

Jim

[den2542]

Jim I did discuss that, but my LDL is rather low and the HDL is in the 20s so he wants to get that higher. I guess the ratio is what is important. The doctors said if Genvoya has a bad effect on LDL he'd give me another pill. So I was looking for ways that might bring HDL ip quick. I know that meds have a different effect on everyone but was wondering if anyone say an anecdotal effect like the drug speaks of. Maybe the use of Genvoya is still too new yet.

[Jim Allen]

Hi

Ok, so if I get you correctly, you want to increase your good cholesterol and next to this your are also concerned about LDL levels and possible side effects from Genvoya when you do switch, the doctor however is not concerned about the later.

On the LDL and Genvoya look stressing about a possible side effect you don't have  is not really helpful but enough people on this med so maybe they will chime in, anecdotally.  From the 104/111 pooled studies results, 11% of adults on Genvoya experienced fasted LDL-cholesterol levels >190 mg/dL. That's reassuring to be honest or it is to me. (Having a hard time finding a good reference but included the studies finding announcement, ping me if you want a better one and ill dig it out) 

On the HDL did you speak to the doctor about this? I mean normally its a lifestyle change and hard work. better diets long term and more exercise next to cutting out any bad habits, reading your post I see you don't smoke so that is not a concern at least. 

Mine own cholesterol levels did get better 2-3 years ago after adopting a better lifestyle with more exercise, no drinking and better diet. I had to however changed things for other reasons, the improvement in cholesterol was just a side effect of that.

Anyhow, hope you find what you need.

Take it easy.

Jim

https://www.poz.com/basics/hiv-basics/hiv-heart 
http://www.gilead.com/news/press-releases/2017/2/gilead-announces-144week-data-evaluating-safety-and-efficacy-of-genvoya-for-treatment-of-hiv1-in-treatmentna%C3%AFve-adults

PS. 

I know that meds have a different effect on everyone

Not sure I agree with that fully  I had one guy claim it made his left leg shrink  anecdotal is not fact of course, but I get what you mean.

Jim

[den2542]

Ok yall.need your help and reassurance. Today on 18 Dec I took my first Genvoya. Took it at 5 pm. Had no other meds in the day. Had 2 Activia yogurts and  two corn tortillas. By 630 pm had an two episodes of diarrhea. Lots of gas. Obviously this is one side effect. Will this side effect go away in time as the body adapts and how long is the adapt period? One week, two weeks? Is there a way to avoid the diarrhea or gas? Oh btw I had no other good during the day. Just wasn't hungry. Please share ur experiences.

[Jim Allen]

Just wasn't hungry and in less than 90 mins from taking the pill having the runs, more likely it would be something else. That would be my thinking at least for what its worth.

This is a "Take with food" medication so I am not sure if you took all the food you mentioned that day when taking the meds but if not you should be eating a meal when taking this medication. Diarrhea and gas is a common enough settling in issue there is no denying that however you should not be expecting to live with it for ever and can do a lot to mange it if the meds is indeed the cause.

Anyhow whatever I think if it continues for more than a few days I would say do speak to your GP as diarrhea can be signs of all sorts of issues that need to be checked and addressed, in the meantime you could try a balanced diet (Not eating all day is not healthy) or a dry diet for a few days and adding probiotic Lactobacillus acidophilus - Live yogurt until it settles down, this link goes into some basics on managing it

https://www.poz.com/basics/hiv-basics/nausea-vomiting-diarrhea

Hope the link yields something useful for you and hope you feel better soon

Jim

[den2542]

JIM when you say "probiotic Lactobacillus acidophilus" - Live yogurt. You Specifically Do Not Mean Over The Counter Pills right?
You mean actual yogurt. That's why I used Activia yogurt by Dannon. It says on there probiotic yogurt with Bifidus. Bifidus Regularis. In addition to the live bacterial cultures used to make all Activia contains Bifidus Regularis, a trademarked name for an organism normally present in the human intestines called Bifidobacterium lactis DN-173 010. So I figured that was ok. Just wondering if this side effect goes away promptly. I took some vacation in the event something happens. I suppose I could use a Brat diet for a while.

[den2542]

JIM when you say "probiotic Lactobacillus acidophilus" - Live yogurt. You Specifically Do Not Mean Over The Counter Pills right?
You mean actual yogurt. That's why I used Activia yogurt by Dannon. It says on there probiotic yogurt with Bifidus. Bifidus Regularis. In addition to the live bacterial cultures used to make all Activia contains Bifidus Regularis, a trademarked name for an organism normally present in the human intestines called Bifidobacterium lactis DN-173 010. So I figured that was ok. Just wondering if this side effect goes away promptly. I took some vacation in the event something happens. I suppose I could use a Brat diet for a while.

[Jim Allen]

Yeah, look personally I ate 500 grams of the stuff (17.5 ounces) when I had adjustment bowl problems of natural live yogurt, the small Danone pots we get here at least would not cut my needs at the time.  I had this BTW with every combination of meds I tried for a few days to a few weeks.

How long it will take to adjust if the meds are the cause, depends and i suspect varies per person if they do have this issue, could 1 day, a few days or weeks. (Not that I would wait weeks to check with the doctor as diarrhea is not always as innocent as it seems)

I suppose I could use a Brat diet for a while.

You could, again don't wait weeks or months to check in with the doctor if the issue continues.

My point is no need to worry if its just the body adjusting to the meds its not something you should be expecting to live with and if it last too long talk to the doctor, with todays medication and range of combination possible neither you or anyone else should be expecting to have to put up with any side effects beyond a brief adjustment time.

Truly hope it settles down soon for you.

Jim

 

[den2542]

So for the benefit of those that are considering Genvoya just wanted to report on my second day and report some anecdotal stuff. Well so I took the pill but this time I made SURE that I ate small meals often in the day. Well what do you know... no nausea, no diarrhea, no loose stools. I had no issues sleeping. I seemed to feel headachy but I would attribute that to taking my sinus meds Claritin in the AM instead of at night. I moved all my vitamins in the am and only take Genvoya at 6 pm. I ate two bagels and a two tuna sandwiches while enjoying my pill. Now one thing that I noticed. I seem to urinate more often with Genvoya... what's up with that. Also I have more energy and not as tired. Also I am more hungry.