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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Steinway on April 16, 2011, 01:22:51 am

Title: Rilpivirine?
Post by: Steinway on April 16, 2011, 01:22:51 am
I saw my doctor yesterday and he was excited about this drug.  I always get a little nervous when someone talks about a new drug, especially when the one I'm on now, Atripla, works well for me.  I don't understand why he would encourage me to use this new drug.  It's not even on the market yet.  He said it will become available in August.
    His way to encourage me was to say that I wont feel the melting, or I wont have the weird dreams.  I told him that on Atripla and when I was on Sustiva/Truvada that I didn't have either side effect accept for within the first 48 hours or if I took the pill too long before I went to bed.  I've been lucky with no side effects on any of those pills. 
    I've only read a couple of articles about Rilpivirine and all that it really talked about was all of the drugs causing Vitamin D deficiencies.  Does anyone have any knowledge about this pill?  Any articles they might want to pass along? 
   Thank you.
Title: Re: Rilpivirine?
Post by: Miss Philicia on April 16, 2011, 01:31:38 am
Actually it's less likely to cause vitamin D drops

http://www.aidsmeds.com/articles/hiv_rilpivirine_tmc278_2581_20029.shtml
Title: Re: Rilpivirine?
Post by: newt on April 16, 2011, 02:55:26 pm
I would only take a non-approved drug after I'd burnt through the approved ones. I am enough of a guinea pig as it is.

- matt
Title: Re: Rilpivirine?
Post by: Miss Philicia on April 16, 2011, 03:43:55 pm
I'm quite sure I've read that it's on track as a one-pill/day (w/Truvada) FDA approval in May.

edit: "Dr. Bob" @ theBody wrote last week that it's due to be approved in May, but not yet as formulated as one pill/day, that will come later -- so of course you'd just combine it for now with Truvada.  But the May approval for Rilpivirine isn't just for "treatment experienced" like it first was 4-5 years ago when Prezista, Intelence, Isentress all first came out -- this will be FDA approved for treatment naive patients from the start (assuming Dr. Bob knows what he's talking about, of course).

It's also supposedly easier on your cholesterol and triglycerides than Sustiva is, which is a huge plus always.

But honestly, when something is mere months away from FDA approval I'd not really hesitate.  All around it sounds like a way better drug than Sustiva, which personally I've never been big on in the first place.  I mean, hooray for a drug that can cause mood changes and increased depression in a patient population already 12x predisposed to depression than HIV-negative people.  And it's not just a few patients that have that happen either.
Title: Re: Rilpivirine?
Post by: Hellraiser on April 17, 2011, 02:48:43 am
It's also supposedly easier on your cholesterol and triglycerides than Sustiva is, which is a huge plus always.

But honestly, when something is mere months away from FDA approval I'd not really hesitate.  All around it sounds like a way better drug than Sustiva, which personally I've never been big on in the first place.  I mean, hooray for a drug that can cause mood changes and increased depression in a patient population already 12x predisposed to depression than HIV-negative people.  And it's not just a few patients that have that happen either.

A-fucking-men
Title: Re: Rilpivirine?
Post by: austinguy on April 21, 2011, 11:32:07 am
I have actually been in trial taking this drug. It is a combination of Rilpivirine 25mg and Truvada. So Atripla with the Sustiva being replaced with a new NNRTI. I was asked by my Dr. to participate in this study because I really liked the Atripla and they wanted a strong opinion about this test drug. I was undetectable with Atripla and have been for the 7 weeks I have taken this trial med. The Atripla dreams do go away. I miss them. But the *fog* that I had around my head for about 45 mins in the morning on Atripla is now gone. This is a good thing. 4 weeks into the new drug trial I got very depressed. I am generally a very upbeat person. I would daze off in meetings at work and felt like I was walking through a dark journey in my mind. This went away after 2 weeks. I did not experience this on Atripla. I used to drink coffee every morning. Something I enjoyed doing. But the trial drug gives me serious heartburn if I drink coffee or alcohol. My other labs have been the same. If these are the only side affects of having to take such serious meds then I am all for it. But I will probably switch back to the Artipla when the test is over cause the super sonic technicolor dreams I had on Atripla ruled. Oh, the morning wood thing that happens with Atripla happens with this drug as well. I've left out that this pill is a one a day that they suggest you take on a full stomach. The pill is smaller than Atripla as well.
Title: Re: Rilpivirine?
Post by: mikeyb39 on April 21, 2011, 11:00:08 pm
yeap Austin, I can attest to the morning wood.  fun times.
Title: Re: Rilpivirine?
Post by: buginme2 on April 22, 2011, 01:01:38 pm
Ya know I have gotten so used to the Atripla that barring any necessity to change due to labs and such I don't think I would jump on the band wagon to switch yet.  I think ill stick with the A for awhile.  Besides the morning wood on A is awesome.

Great new pic mikey
Title: Re: Rilpivirine?
Post by: flip408 on April 29, 2011, 12:57:47 am
Yea I am on that study also.  Switched from reyataz, norvir, epzicom, 2/2011. 

They really look at the labs, its reduced my bilirubin, all else within normal.   I like the one pill, I take it after a full breakfast.  No lasting side effects at all, I did have kinda like a "msg" (post cheap chinese take out) headache at night for 10 days or so, it faded away and easy street since then. 

My results have been essentially consistent.  If all continues well, I plan to stay with it.
Title: Re: Rilpivirine?
Post by: austinguy on May 12, 2011, 10:09:00 am
To update, I am almost 12 weeks in to the trial. I have taken this pill at all different times of the day without any side effects. It is as if I am taking a multi vitamin, meaning any side effects I had before with this drug are now gone. I would never have been able to take Atripla at 6 in the morning before going to the gym and work because of the "hazy head" I would get. I still really miss the Atripla dreams, but I feel so rested when I wake up now. I am still undetectable. I said earlier I would probably switch back to Atripla, the 2 week depression I went through with this test drug was really rough, but I probably will not switch back. I like this new drug. We are really blessed that treatments have come so far.
Title: Re: Rilpivirine?
Post by: mikeyb39 on May 13, 2011, 02:58:29 am
I'm kind of liking the outcomes of this new drug.  Don't get me wrong, the Atripla is doing quite well, but i cant help but wonder if my bad mood swings are getting worse due to the sustiva.
Title: Re: Rilpivirine?
Post by: Hellraiser on May 13, 2011, 01:57:25 pm
I'm kind of liking the outcomes of this new drug.  Don't get me wrong, the Atripla is doing quite well, but i cant help but wonder if my bad mood swings are getting worse due to the sustiva.

It's been my experience that I have become a lot more prone to moodiness probably associated with the extreme swings in anxiety I've been going through.  I have got to get off of Atripla.
Title: Re: Rilpivirine?
Post by: Rev. Moon on May 13, 2011, 02:15:14 pm
It's been my experience that I have become a lot more prone to moodiness probably associated with the extreme swings in anxiety I've been going through.  I have got to get off of Atripla.

Girl please, you're just a histrionic queen; don't try to blame it on chemistry  ;D
Title: Re: Rilpivirine?
Post by: Hellraiser on May 13, 2011, 02:18:16 pm
Girl please, you're just a histrionic queen; don't try to blame it on chemistry  ;D

HOW DARE YOU?!?!?!

I mean, nuh uh.
Title: Re: Rilpivirine?
Post by: buginme2 on May 13, 2011, 02:23:16 pm
Have they said how well rilpivirine crosses the blood brain barrier.  I have been told that one of the reasons Atripla causes so many CNS side effects is due to Sustiva being able to saturate the brain and cns so well.  I wonder how well rilpivirine does.  I dont want any HIV in me brain. :-)
Title: Re: Rilpivirine?
Post by: mikeyb39 on May 14, 2011, 09:48:29 am
I was wondering though can you stop taking Atripla for another drug like this and go 'back' to Atripla if you dont like it or it doesn't work out for you
Title: Re: Rilpivirine?
Post by: flip408 on June 05, 2011, 08:00:15 pm
They told me I could go back to my previous, but i have had no issues and no complaints and no side effects, I can't see any reason to go back.

I cant comment on the blood brain thing or the "moodiness" of Atripla.  This one a day rilipivirene/truvada has worked great over 12 weeks now. 
Title: Re: Rilpivirine?
Post by: austinguy on June 17, 2011, 11:25:00 pm
Update. I am 16 weeks in to the trial. This medication is great stuff. I am still UD and my CD4 is has been close to 900. I have been going to the gym 3-4 times a week. I have dropped 13 pounds since starting the trial. My mind is clear and focused and I am generally all around happier. The only, and this is so minor, side effect is that an hour after I take the pill my mouth gets dry for about an hour...that's it! I still miss the Atripla dreams, I really enjoyed them. But I wake up refreshed and ready to go now because my brain was not in technicolor Atripla land. I also still do not have the "hazy head" when waking, or after taking that I did on Atripla. I sent my Dr. an email before I started the trial asking if I would build a resistance to Atripla if I stopped taking it for the trial drug. He told me no and "that you can not build resistance to a medication if it is working." Also, the morning wood on Atripla is still very evident on this trial drug and I have noticed an increase in my sex drive since starting the trial. My skin and eyes look healthier and I just feel better all around. This new drug, I'm told, has a higher resistance profile and that is great in itself. I believe, Ladies and Gentleman, that I am taking the new wave of HIV medication, and speaking from my limited experience taking it, this is going to be a very good thing for the HIV community.
Title: Re: Rilpivirine?
Post by: mikeyb39 on June 18, 2011, 04:35:04 am
Hi Austin,
What else are u taking with it?  truvada?  I've been talking to my doc of a possible switch due to the sustiva part of the Atripla.  Thats great news
Title: Re: Rilpivirine?
Post by: austinguy on June 18, 2011, 03:55:06 pm
Yes, Truvada and Rilpivirine. The one a day pill is much smaller than Atripla. It is best to take it with food. I have taken it at all times of the day to see how it affects me with no problems. Other than the depression and dark moods I experienced early on for a couple of weeks this has been a cake walk.
Title: Re: Rilpivirine?
Post by: Betelgeuse on June 20, 2011, 04:45:35 am
What I find most interesting about this drug is that, in the sea of 300-600mg drugs out there, this one's a mere 25mg's.

I am sure there are other ART's out there with such a small dosage, I'm kind of a less-is-more kinda guy.  I like it.
Title: Re: Rilpivirine?
Post by: jb1973 on June 28, 2011, 08:43:01 am
Update. I am 16 weeks in to the trial. This medication is great stuff. I am still UD and my CD4 is has been close to 900. I have been going to the gym 3-4 times a week. I have dropped 13 pounds since starting the trial. My mind is clear and focused and I am generally all around happier. The only, and this is so minor, side effect is that an hour after I take the pill my mouth gets dry for about an hour...that's it! I still miss the Atripla dreams, I really enjoyed them. But I wake up refreshed and ready to go now because my brain was not in technicolor Atripla land. I also still do not have the "hazy head" when waking, or after taking that I did on Atripla. I sent my Dr. an email before I started the trial asking if I would build a resistance to Atripla if I stopped taking it for the trial drug. He told me no and "that you can not build resistance to a medication if it is working." Also, the morning wood on Atripla is still very evident on this trial drug and I have noticed an increase in my sex drive since starting the trial. My skin and eyes look healthier and I just feel better all around. This new drug, I'm told, has a higher resistance profile and that is great in itself. I believe, Ladies and Gentleman, that I am taking the new wave of HIV medication, and speaking from my limited experience taking it, this is going to be a very good thing for the HIV community.

Austinguy! I think you have made my mind up!!!  My doctor suggested this combo when i was saw her last week.   I was discussing starting meds and had mentioned Atripla.  She said that was a fine choice but this combo, she felt, would be a better choice since it has less side effects than Atripla.  Also, she said right now it is not available in one pill a day, but should be by august.   :) ;) :) :) ;)
Title: Re: Rilpivirine?
Post by: austinguy on July 03, 2011, 04:57:27 pm
jb1973,

I would be interested to get your thoughts about it if you start taking it. In the trial I participate in there are 4 of us in the trial. I had the other 3 participants over for dinner last week. None of them went through the 2 week funk that I did, and across the board the side effects are minimal compared to Atripla and I like Atripla. Please keep us/me posted.

Title: Re: Rilpivirine?
Post by: jb1973 on July 15, 2011, 10:49:52 am
Well, I will definately keep you posted.  Although, now I'm not sure if I will start taking meds as soon as i thought.  My latest CD4 is 642 so I really have time to wait before I start i guess......me and my partner are discussing when I should start and I think I may wait a little bit, but, when I do< i plan on choosing this combo......
Title: Re: Rilpivirine?
Post by: RobT on July 15, 2011, 04:28:43 pm
My doctor is switching me over to Rilpivirine and Epzicom after hearing about my recent bout of side effects on Atripla. I have been taking Atripla since it came out, so I thought all of the side effects would diminish. Is there anything I need to be concerned about with this change in medication?

Rob Tripp
aka RobT (aidsmeds)
Title: Re: Rilpivirine?
Post by: surf18 on July 15, 2011, 06:40:34 pm
rob-it seems to be well tolerated.i was looking to make the switch to it but am unable to with me being on acid reflux meds. so if your on acid reflux meds your out.
Title: Re: Rilpivirine?
Post by: RobT on July 16, 2011, 01:19:43 pm
I'm going to switch when my Atripla runs out. I already had the resistance test, and no cross resistance.

Rob Tripp
aka RobT
Title: Re: Rilpivirine?
Post by: kellybryana on July 16, 2011, 02:27:25 pm
yeah, I'm taking it with truvada, and I have absolutely no side effects. Its been only a week, but so far so good. I had a minor stomach ache for a couple days, but that went away very quickly. Good luck!
Title: Re: Rilpivirine?
Post by: stealthy81 on July 17, 2011, 06:00:06 am
Hi from Milano.

Me too in to the rilpivirine trial since july 4th.  :) Before rilpivirine I used to take truvada-reyataz-norvir. With the first therapy i had no real side effects except jaundice and a sense of swollen belly. Now i feel better since i started this new therapy.

Ciao. ;-)
Title: Re: Rilpivirine?
Post by: flip408 on August 11, 2011, 02:41:12 am
I got my 24 week results from the Rilpivirine/truvada trial, about average, 443 <50 21%.  I was hoping for over 500 cd4, but I am good with the 1% increase.

I am more desirable now,    uh er,  I mean my levels for cholesteral 149 and LDL 98.   
They said I was borderline hi, ( reefer reference here),    but they  were talking about my triglycerides, 158
My HDL was so low.....how   so low I cant mention.    Hey, thats not funny.

Continue with no side effects or med issues or any other health issues.  Dont really notice any difference from my previous Rtaz,norv,epzic.  One pill is more easy. 

Regards.
Title: Re: Rilpivirine?
Post by: fitguy on August 19, 2011, 10:10:51 pm
I just got back from seeing my doctor and I start Rilpivirine and Truvada tonight with dinner.  I've been on Atripla for four years and even though my numbers are all excellent, the mood swings, mild depression, anxiety and sometimes foggy mornings were just too much.  This forum has been very helpful with my decision and my doctor and I are hopeful that switching meds will make a difference.  I'll keep everyone informed as the days go by.  Thanks to all of you who have contributed their thoughts and experiences.
Title: Re: Rilpivirine?
Post by: surf18 on August 19, 2011, 10:49:57 pm
let us know how you make out fitguy.