Let me start over !

[Billy B]

Hello fabulous forum members. I have posted a few times, but I have not properly introduced myself. My name is Billy and I live in Western NC. I have known about my + status for over 15 years. It was discovered during a physical for a life insurance policy. At that time, I contacted Wake Forest University Medical Center/Baptist Hospital - Infectious Disease Clinic and was luck enough to be assigned to Dr. Peacock. He had recused two of my friends from the jaws of death so I knew I was in competent hands.
My first two sets of labs returned results of cd4 550 & 590 and vl of 2500 & 2700. Judging by my numbers, Dr. Peacock told me that I had been + for a few years. I thought that I had done everything right as far as safe sex, but somehow I screwed up.
Anyway, as the years passed my labs stayed stable. My doctor said that I had time on my side and an unusually good immune system. After 15 years my numbers started to slip and my cd4 fell to 350 and my vl went up to 8000.  Dr. Peacock told me that it was time to attack my virus and the good news was that the new meds were so much better and lacked a lot of the side effects of the old ones.
I started on Atripla, but it was not my friend and after two weeks I called it quits. I was dizzy,fatigued and unable to function. I lost 6 lbs in two weeks because I could not eat. My doctor perscribed a weeks worth of Truvada to take until the Sustiva was out of my system. I waited a few months to get my head in the right place and started on Isentress & Truvada. I have not had ANY side effects with this combo and have worked everyday. It has been 7 weeks since I have been on these meds and I am going Friday to have my first labs since starting them. I am praying for good numbers and success with this treatment option.
Peace & Love,
Billy
BTW- I failed the physical for the Life Insurance !
 

[Matty the Damned]

'sup Billy.

Atripla is potent stuff. I'm sure your numbers will be pleasing.

MtD

/edit: coz I have teh dumb/

[Moffie65]

Welcome I guess.  Been on Issentris for about three years now, and seems like I have a new lease on life because of it.  Good luck and see you in the fora.

[Billy B]

Yes Matty, the Atripla kicked my ass! I guess it is easier for younger people to take.
Billy

[Matty the Damned]

Yes Matty, the Atripla kicked my ass! I guess it is easier for younger people to take.
Billy

Heh. I didn't read your OP properly and thought you were still taking it.

I took efavirenz (the nasty shit in Atripla) back in 2003 and it sent me nuts, so I know what you mean.

MtD

[skeebo1969]

  Welcome to the forums Billy.  I had no luck with Atripla either, it kicked my ass.  Glad the new regimen is working well for you and I look forward to seeing you around.

  Thomas

[Billy B]

Welcome I guess.  Been on Issentris for about three years now, and seems like I have a new lease on life because of it.  Good luck and see you in the fora.

Moffie65- If I can ask, what else are you taking with the Isentress?
Billy

[Inchlingblue]

I'm also on Isentress/Truvada and doing great; not experiencing side effects and the numbers are excellent (UD and ~700 CD4s).

[Jeff G]

Welcome Billy . I'm on Atripla and want to change to Isentress / Truvada . I cant sleep at night and feel fatigued all day . So far my docs have talked me out of changing because they say I'm doing so good on Atripla . My docs say I have been on Atripla so long they doubt that's the cause of my problems but I'm not so sure .  I may need to grow a pair and insist on the change .

[leatherman]

welcome Billy from just south of Charlotte, down in here SC. (I'm between Tega Cay and the Charlotte-Mecklenburg/NC state line that is just behind the neighbor's house across the street). I was born a Tarheel; but lived up with the yankees in OH for the last 25 yrs. I recently moved back to the Carolinas and ended up here in SC to escape those high taxes up in Charlotte.

That's good to hear that you were able to go so long without any meds; and good to hear that you're doing much better on the newer regimen. I was stuck on Sustiva (part of Atripla) for about 9 months back when it was new and there wasn't much of anything else. it definitely can be an ass-kicker.

Hope to see you around the forums!

[Hellraiser]

Welcome Billy . I'm on Atripla and want to change to Isentress / Truvada . I cant sleep at night and feel fatigued all day . So far my docs have talked me out of changing because they say I'm doing so good on Atripla . My docs say I have been on Atripla so long they doubt that's the cause of my problems but I'm not so sure .  I may need to grow a pair and insist on the change .

Have you tried changing the time you take your dose?  I'm thinking of changing mine to like 4 or 5pm, after work.

[Billy B]

Thanks for the warm welcome to the forum.  Inchlingblue, if I can get your numbers I will be a happy person.  jg1962, my doctor said that most people are started on Atripla because it is once a day, but to tell you the truth twice a day dosing is not a big deal and I sleep so good and can eat when ever I want.  And Leatherman, I live a few miles west of Hickory in the foothills.
Peace & Love,
Billy

[Jeff G]

Have you tried changing the time you take your dose?  I'm thinking of changing mine to like 4 or 5pm, after work.

First of all I would like to thank Billy for posting this , its really given me allot to think about . Please forgive the hijack , I thought since your post is about Atripla it might fit here .

After experiencing Hiv meds in the 80's , 90' and up to now Atripla was a dream come true . Every other cocktail I tried before sustiva and truvada was nothing more than a nightmare for me .

That's why I have so much fear about changing meds along with the fact my docs insist I stay on Atripla .

I have tried taking Atripla while awake and it just makes me a feel like I'm on an acid trip and a bad one at that . My docs prescribed Ritalin today for my fatigue even though I told them many times I think its the Atripla side effects that is the problem . I see my doc next month and I am going to ask her point blank if she thinks switching meds is really a bad idea compaired to giving me amphetamines to stay awake during the day .

[tednlou2]

Good to hear from you.  I'm glad the new regimen is working out for you.  Were you told you were a LTNP?  How did you feel for those 15 years?  Did you feel perfectly fine and wouldn't have known you were poz if not for the physical that told your status?  Did you have more illnesses, but were able to recover quickly?  Any fatigue issues?  I'm always curious how people who were able to keep good numbers for so long felt physically and mentally.

Anyway, welcome to the forums.  I look forward to hearing more from you.

[Billy B]

First of all I would like to thank Billy for posting this , its really given me allot to think about . Please forgive the hijack , I thought since your post is about Atripla it might fit here .

After experiencing Hiv meds in the 80's , 90' and up to now Atripla was a dream come true . Every other cocktail I tried before sustiva and truvada was nothing more than a nightmare for me .

That's why I have so much fear about changing meds along with the fact my docs insist I stay on Atripla .

I have tried taking Atripla while awake and it just makes me a feel like I'm on an acid trip and a bad one at that . My docs prescribed Ritalin today for my fatigue even though I told them many times I think its the Atripla side effects that is the problem . I see my doc next month and I am going to ask her point blank if she thinks switching meds is really a bad idea compaired to giving me amphetamines to stay awake during the day .

I knew in just a few weeks that I could not tolerate aTRIPla and my doctor told me that there were other options and no need for me to suffer. I already had sleep issues, but since I have started my new meds I sleep like I did when I was a child. Also, having to wait two hours after eating to take Atripla really screwed with me. Now I wake up and take the Isentress & Truvada with a glass of water and in the evening I take my other Isentress tab with whatever I am drinking. I guess that the only negative is that I have two co pays now but it is worth it to have my sanity.

Peace & Love,
Billy

[Billy B]

Good to hear from you.  I'm glad the new regimen is working out for you.  Were you told you were a LTNP?  How did you feel for those 15 years?  Did you feel perfectly fine and wouldn't have known you were poz if not for the physical that told your status?  Did you have more illnesses, but were able to recover quickly?  Any fatigue issues?  I'm always curious how people who were able to keep good numbers for so long felt physically and mentally.

Anyway, welcome to the forums.  I look forward to hearing more from you.

During the 15 years that I wasn't on meds I "donated" quite a bit of extra blood that was used for research at Wake Forest/Baptist Hospital. My blood was also sent to several other centers that are were doing research/trials on LTNP and Elite Controllers. Because I had a measurable viral load and lower than normal cd4 count I was not considered an Elite Controller but kinda fell into the LTNP status because I stayed stable & healthy. My doctor even speculated that I may have naturally had a lower cd4 count to start with. I have never had an OI and have always been very healthy. But to answer you question, I would not know today that I was + had it not been for that physical.
Peace & Love,
Billy

[Inchlingblue]

  Inchlingblue, if I can get your numbers I will be a happy person.  

I included my latest numbers in my post (above). I started meds (July 2009) with about 340 CD4s and a low viral load of only about 9K. I went UD in about a week, maybe less (not surprising since the VL was low) and the last time I had lab results the CD4s were almost 700, which was about 4 months ago. I had another set of labs done about 2 weeks ago but I don't have the results yet.

I had been 100% adherent and then recently for the first time I missed my morning Isentress/Truvada dose (I did take the evening Isentress dose). I even started a thread about it because I hated breaking my perfect adherence record and was a little concerned. And it was on the exact day I had the blood drawn so if there was a problem it won't show up in those latest results. I think it'll be fine, since I had already been UD for almost a year straight. The only reason I even bring it up here is because Isentress does have a low barrier to resistance so it's important not to miss doses, even though the timing does not have to be exact.

Isentress is very likely to be approved for once a day dosing and there are some people already taking both Isentress pills in one shot daily and doing fine. The clinical trials looking at once daily appear to be going well but they are not officially over.

[Billy B]

Inchlingblue- I hope I will have great numbers like yours.
Peace & Love,
Billy

[tednlou2]

During the 15 years that I wasn't on meds I "donated" quite a bit of extra blood that was used for research at Wake Forest/Baptist Hospital. My blood was also sent to several other centers that are were doing research/trials on LTNP and Elite Controllers. Because I had a measurable viral load and lower than normal cd4 count I was not considered an Elite Controller but kinda fell into the LTNP status because I stayed stable & healthy. My doctor even speculated that I may have naturally had a lower cd4 count to start with. I have never had an OI and have always been very healthy. But to answer you question, I would not know today that I was + had it not been for that physical.
Peace & Love,
Billy

Thanks for the reply and sorry for the 20 Questions.  Like I said, I'm just very interested how people felt 10 or 15 years without meds.  It is very good that you participated in the studies.  I've often wondered how many of us would have been considered elite controllers or LTNPs if we knew exactly how long we had been infected.  Unfortunately, many of us don't know our statuses until we get sick.

Thanks again for sharing your story.

[Dachshund]

I couldn't tolerate Sustiva (atripla) and changed to Prezista. It's a marvelous drug with no side effects. Still have to attend to the occasional Norvir poopies, but I'm use to that by now.

[tokyodecadence]

Have you tried changing the time you take your dose?  I'm thinking of changing mine to like 4 or 5pm, after work.

I actually switched to taking mine in the morning, rather than at night, for that very reason. I wake up for the day around 3am. After about a year on Atripla, I began to have crazy insomnia. And seeing as how I eat a light breakfast anyway (if I eat anything heavy that early in the morning, I get really sleepy, 'heavy', being anything other than some fruit and coffee), it worked better to take it then. I get home late from school or work sometimes, and don't have a whole lot of time before I eat dinner and go to sleep. And as we all know, food and atripla do not mix well. So I switched to taking it in the morning, and it works like a charm.

[HARLEY_B]

 I was not aware until after reading these last posts that so many of us had trouble with Atripla. I'm always hoping that new and improved meds will be available soon but not very optimistic at times about this occurring any time soon. My biggest concern is the copays associated with these meds. I had good health insurance at first but the company I work for keeps jacking around with it making it more and more expensive to obtain the meds. I also have to order a 3 month supply from their mail order pharmacy and I constantly get quoted a different price every time I reorder it. One time is $864/ 3 month's supply and then the price jumps to $1465 and then when they run it through my checking account, they removed $2550. My gosh how are any of us supposed to make it on that? Like Leatherman I live in SC. Does anyone know if there is any sort of assistance available in this state?
 Also, Billy welcome to the forums. I wish you all the best with your new regimen...and not meaning to highjack your thread by any means.                                   Tim

[Miss Philicia]

I was not aware until after reading these last posts that so many of us had trouble with Atripla. I'm always hoping that new and improved meds will be available soon but not very optimistic at times about this occurring any time soon.

What makes you think that better meds haven't come out recently?

[leatherman]

Like Leatherman I live in SC. Does anyone know if there is any sort of assistance available in this state?

hey tim, I send you a PM with some suggestions. get back to me and let me know if i can help you any more.

What makes you think that better meds haven't come out recently?

isn't the quad pill still in a study? I didn't think much else "new" had come out in the last 3 yrs or so, especially not a once-a-day single med.

[Billy B]

I was not aware until after reading these last posts that so many of us had trouble with Atripla. I'm always hoping that new and improved meds will be available soon but not very optimistic at times about this occurring any time soon. My biggest concern is the co pays associated with these meds. I had good health insurance at first but the company I work for keeps jacking around with it making it more and more expensive to obtain the meds. I also have to order a 3 month supply from their mail order pharmacy and I constantly get quoted a different price every time I reorder it. One time is $864/ 3 month's supply and then the price jumps to $1465 and then when they run it through my checking account, they removed $2550. My gosh how are any of us supposed to make it on that? Like Leatherman I live in SC. Does anyone know if there is any sort of assistance available in this state?
 Also, Billy welcome to the forums. I wish you all the best with your new regimen...and not meaning to highjack your thread by any means.                                   Tim

No problem Tim!
Since I had no drug resistance the Isentress & Truvada combo was the next choice after Atripla. There are also others that combos that can be used with the Isentress depending on what type of meds that someone had been on in the past. Because I am 50 my doctor wanted to use a combo with the least chance of liver damage.

I am still employed and have BCBS of NC so my co pay for each med is $35 x 2 = $70 per month.

Yesterday I saw my doctor for the first time  since starting the I&T and he was pleased that my last 6 weeks had been "uneventful". I will know my lab reports in about a week...I can't wait!

I ask my doctor about taking all my meds at one time like some people have and he said that he was aware of people doing it. The pharmaceutical rep for Merck had told him that people were doing this on their own and having somewhat good results. BUT AT TIHS TIME this practice is not recommended my Merck because of the low barrier of resistance and the chance that it could eliminate the effectiveness of Isentress (drug resistance).

We also talked about the Quad pill and it is in phase 3 trials.

Oh, and the biggest surprise of the visit was that my doctor and the drug company reps are very much aware of this site and often read our posts!

Peace & Love,
Billy

[Inchlingblue]

  . My biggest concern is the copays associated with these meds. I had good health insurance at first but the company I work for keeps jacking around with it making it more and more expensive to obtain the meds. I also have to order a 3 month supply from their mail order pharmacy and I constantly get quoted a different price every time I reorder it. One time is $864/ 3 month's supply and then the price jumps to $1465 and then when they run it through my checking account, they removed $2550. My gosh how are any of us supposed to make it on that? Like Leatherman I live in SC. Does anyone know if there is any sort of assistance available in this state?
 

There are co-pay assistance programs that could probably help:

http://positivelyaware.com/2009/09_02/13th_annual_hiv_drug_guide.shtml

http://www.natap.org/2009/newsUpdates/042709_01.htm

[newt]

To the OP, good luck I am sure all will work out well.

To all, modern 1st line combo options are all of about equal effectiveness, and people shouldn't suffer undue side effects from one when another is waiting on the table. There's no point in treatment if you are not able to function. This applies as much to the undue yellowing from Reyataz, weirdness and depression from Isentress, squits from Kaletra et al as it does to the trippiness of efavirenz in Atripla. This is true of all decent mainstay anti-HIV drugs (+ 2 nukes, as ever, for now, for most people....).

- matt

[Billy B]

To the OP, good luck I am sure all will work out well.

To all, modern 1st line combo options are all of about equal effectiveness, and people shouldn't suffer undue side effects from one when another is waiting on the table. There's no point in treatment if you are not able to function. This applies as much to the undue yellowing from Reyataz, weirdness and depression from Isentress, squits from Kaletra et al as it does to the trippiness of efavirenz in Atripla. This is true of all decent mainstay anti-HIV drugs (+ 2 nukes, as ever, for now, for most people....).

- matt

Thanks Matt.
The yellowing from Reyataz is why my doctor did not choose that drug and the tripiness from Atripla is why I stopped it. I haven't felt weird or depressed from the Isentress but I have had a couple episodes of the mighty wind from Truvada. That lasted a few days but all is OK now.
Peace, Love & Soul
Billy

[Miss Philicia]

I didn't think much else "new" had come out in the last 3 yrs or so, especially not a once-a-day single med.

fuck one-pill-a-day obsessiveness... that's not what I was referring to

[Billy B]

fuck one-pill-a-day obsessiveness... that's not what I was referring to

Considering the pill burden that a lot of people have had to endure, I am so thankful that I only have three pills a day to worry about. I have read several articles about new meds and it does appear that the Integrase Inhibitors (Isentress), Maturation Inhibitors and Cellular Inhibitors are probably going to be the last of anything new because all of the parts of virus replication has been identified and addressed. The next step is killing the virus that is hiding in our bodies ......and hopefully a cure!
Peace & Love,
Billy

[Billy B]

Well forum friends, I just spoke to my Doctor's PA because I couldn't wait on my labs results to be mailed to me. IN the six weeks that I have been taking Isentress & Truvada my CD4 increased from 350 to 390 and my VL went from 8000 to undetectable! I realize that six weeks is not enough time to know what my long range out come will be, but it looks like I am off to a great start on this combo.
Peace & Love,
Billy

[Jeff G]

It could just be a lab error . I'm kidding ... that's great news congrats .

[BT65]

That's great news, Billy!

[Billy B]

Thanks! My mother said that this was a better Mother's day present than the wheelbarrow that I bought her.
Peace,
Billy

[leatherman]

from 8000 to undetectable!

WooHoo!