POZ Community Forums

Main Forums => Living With HIV => Topic started by: madbrain on March 05, 2010, 03:29:32 pm

Title: starting Isentress/Truvada
Post by: madbrain on March 05, 2010, 03:29:32 pm
I didn't think I would post this anytime soon, but I'm going to start meds also.

I have had a lot of fatigue for about a month, enough to be nearly non-functional. The fatigue can be traced partly to stress of starting a new job, but I have handled similar amounts of stress much better before (pre-HIV).

Despite my excellent labs, my doc thinks the HIV plays a factor in my fatigue, and not only the stress and depression, and that my body is tired from fighting the HIV. I also have some minor forgetfullness which may be some neurological symptom of HIV - or not.
He has been telling me the past few visits that for people who are symptomatic, even with good labs, it is better to treat the HIV than not.

So, I finally gave in. He wrote me a prescription for Isentress and Truvada. I already picked it up. I may start them tonight, or tomorrow night.

He wanted something that crossed the blood brain barrier, since my blood VL is already so low and any med would probably get me undetectable quickly as I have no resistance. My docs' first choice was Prezista/Norvir/Truvada which is once a day, but there was a contraindication between all P.I.s and tegretol. So he went with Isentress/Truvada - twice a day. I hope my sleep schedule improves soon so I can take it at somewhat regular intervals, since my nights vary from 7 to 15 hours currently and that may make the interval difficult to keep regular for Isentress.

I hope I'm making the right call since there is not much data in people with good labs starting meds.
Title: Re: starting Isentress/Truvada
Post by: next2u on March 05, 2010, 04:15:27 pm
thanks for posting this buddy. keep us posted, im interested in seeing how you feel when you start. i hope the fatigue and forgetfulness are reduced as well. i wish you the best mr brain. 

i'm not on meds either but have been contemplating them for awhile. my energy levels have not dipped but forgetfulness has shot through the roof.

also, do you know if atripla crosses the blood/brain barrier?

best,
d
Title: Re: starting Isentress/Truvada
Post by: aztecan on March 05, 2010, 04:17:59 pm
Hey Mad,

I am on the same regimen. I have to say it is the most side-effect free combo I have ever taken.

If you have trouble remembering the evening dose, I would set an alarm, such as on your watch, cell phone, etc., that will remind you.

Since it doesn't require food restrictions or additions, you can just gulp and go.  ;)

Let us know how you do.

HUGS,

Mark
Title: Re: starting Isentress/Truvada
Post by: tommy246 on March 05, 2010, 04:21:46 pm
Good luck with your meds ,i dont think there are many who start meds with your numbers, i suffered from terrible fatigue before i started meds even when i had a low viral load and good cd4 when first diagnosed . Since then i have so much more energy .
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 05, 2010, 05:07:07 pm

also, do you know if atripla crosses the blood/brain barrier?


Not sure, but the sustiva component was contraindicated for me due to depression issues so atripla wasn't considered.

Title: Re: starting Isentress/Truvada
Post by: madbrain on March 05, 2010, 05:11:12 pm
Mark,

I am on the same regimen. I have to say it is the most side-effect free combo I have ever taken.

If you have trouble remembering the evening dose, I would set an alarm, such as on your watch, cell phone, etc., that will remind you.

Since it doesn't require food restrictions or additions, you can just gulp and go.  ;)

I won't have any trouble with taking the evening dose, the problem is more with the morning dose, since my waking time has been very variable. When you sleep for 15 hrs straight sleeping through 3 alarms, which has happened to me a few times lately, it's hard to keep a 12 hr med interval.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 05, 2010, 06:27:26 pm
I think you've made the right decision.

I know you have good insurance but you might want to hold off a week or two after filling Rx and build up an emergency supply for a rainy day. I did that when starting (waited a whole month after filling first Rx) and it gives me peace of mind to have that stash.

I'm on Isentress/Truvada and not experiencing any side effects to speak of. There are general concerns with Truvada and kidneys as well as bones, as you probably already know. If you aren't already taking calcium/D supplements you might want to consider it.

I take my supplements during lunch so it's not at the same time as the HIV meds. It may not be absolutely necessary but I think it's a good idea just in case (there are calcium interactions with an integrase inhibitor now being studied so one never knows if the same might happen with Isentress).

If any of your co-pays are higher than $30. for Isentress and $50. for Truvada there are co-pay assistance programs (this would include co-pays for meeting any deductibles, which can sometimes be pretty high).

 I already picked it up. I may start them tonight, or tomorrow night.


Whenever you do start I recommend starting with a morning dose of Isentress/Truvada and then do an evening dose of just the Isentress (as opposed to starting with an evening dose).

It was recommended to me by the pharmacist to take Truvada as part of the morning dose in case it might cause insomnia (this is apparently a possible side effect of Truvada, I don't think it's likely to happen but you never know).

Whether you start at night or in the morning, the first dose should include both the pills since you wouldn't want Isentress by itself in your system, even if it's just for a few hours.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 05, 2010, 07:03:32 pm
Thanks, Inchingblue.

I think you've made the right decision.

I know you have good insurance but you might want to hold off a week or two after filling Rx and build up an emergency supply for a rainy day. I did that when starting (waited a whole month after filling first Rx) and it gives me peace of mind to have that stash.

I'm on Isentress/Truvada and not experiencing any side effects to speak of. There are general concerns with Truvada and kidneys as well as bones, as you probably already know. If you aren't already taking calcium/D supplements you might want to consider it.


I'm already on calcium (1200mg) and vitamin D (about 7000 IU), so I think I will be OK.
As far as insurance goes, I have a new plan with my new employer which has low copays.

Quote
I take my supplements during lunch so it's not at the same time as the HIV meds. It may not be absolutely necessary but I think it's a good idea just in case (there are calcium interactions with an integrase inhibitor now being studied so one never knows if the same might happen with Isentress).


I stopped all my supplements the last week trying to figure out the cause of my fatigue. And all alcohol as well for some time. I will probably reintroduce them slowly but not take them as the same time as the meds.

Quote
If any of your co-pays are higher than $30. for Isentress and $50. for Truvada there are co-pay assistance programs (this would include co-pays for meeting any deductibles, which can sometimes be pretty high).

My new insurance plan with Kaiser has no annual deductible, only has a $30 copay for brand name drugs for up to 100 days supply, and $10 for generics, whether by mail or in person.
This morning I only got a one month supply of each med, because it's the first month and I don't know yet if I will be on these long term, but after that I will pick up 3 months at a time like every other prescription I have. I paid $60 and the receipt said my insurance saved me $1900 over retail price.

Title: Re: starting Isentress/Truvada
Post by: WillyWump on March 05, 2010, 07:19:30 pm
Wow Madbrain, I was surprised to see this thread. I've been following you for some time and was amazed at your low VL over time.

I'm glad your starting. I had alot of fatigue prior to starting meds, had to take several naps daily. Once I started the fatigue went away within a week or so (no more naps) and I felt alot more energized. Of course my VL was pretty high but nevertheless I hope you see the same effect as I did.

Keep us posted.

-Will
Title: Re: starting Isentress/Truvada
Post by: CallMeSid on March 05, 2010, 07:21:10 pm
Wow.  I'm surprised to hear of your decision to start meds, MadBrain.  Not second-guessing or passing judgment (as it's not my place or anybody's place to do so), just surprised to hear of this decision given your history of labs and designation as a "viremic controller".  

I remember you mentioning the fatigue a while ago and mentioning that your doctor was suggesting that starting meds would help with the fatigue.  Just wondering -- is there anything in the literature describing the resolution of fatigue after initiation of ARVs (especially your combination) among asymptomatic HIV+ subjects with counts similar to yours?  Maybe the package inserts for Isentress or Truvada detail their utility against fatigue?

I also remember you saying that you've been diagnosed with bipolar disorder and I'm assuming that's why you're on the Tegretol(?).  Is it possible that the fatigue is due to the bipolar disorder, the Tegretol or breakthrough depression?  Are you seeing a board certified psychiatrist at this time or are you getting the Tegretol from your GP (or ID doc)?  Have you ever tried Provigil (approved for narcoloepsy, but used off-label for depression)?  There may be other options, especially if your fatigue is presenting primarily as hypersomnelence or difficulty waking.  Have you ever been evaluated for a sleep disorder?  How is your energy level/fatigue at, say, 2:00 PM?

Wishing you the best.  Keep us posted.

Sid
Title: Re: starting Isentress/Truvada
Post by: Jeff G on March 05, 2010, 07:39:28 pm
Wishing you the best . I'm sending you some positive energy until the meds kick in ;-)   
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 05, 2010, 07:53:54 pm
Sid,

I remember you mentioning the fatigue a while ago and mentioning that your doctor was suggesting that starting meds would help with the fatigue.  Just wondering -- is there anything in the literature describing the resolution of fatigue after initiation of ARVs (especially your combination) among asymptomatic HIV+ subjects with counts similar to yours?  Maybe the package inserts for Isentress or Truvada detail their utility against fatigue?

It's not anything specific to these meds, but my doc thinks the HIV is contributing to my fatigue, not in whole, but in part.

Quote
I also remember you saying that you've been diagnosed with bipolar disorder and I'm assuming that's why you're on the Tegretol(?).  Is it possible that the fatigue is due to the bipolar disorder, the Tegretol or breakthrough depression?  Are you seeing a board certified psychiatrist at this time or are you getting the Tegretol from your GP (or ID doc)?  

I see the chief psychiatrist at Kaiser, in fact I saw her this morning, an hour before my physician. She gave me some Wellbutrin to add to my tegretol/celexa. Some of the fatigue is definitely due to bipolar depression. But I have had depression many times over the years, but never fatigue this severe before I was HIV+.

Quote
Have you ever tried Provigil (approved for narcoloepsy, but used off-label for depression)?  There may be other options, especially if your fatigue is presenting primarily as hypersomnelence or difficulty waking.  Have you ever been evaluated for a sleep disorder?  How is your energy level/fatigue at, say, 2:00 PM?

I haven't tried Provigil, nor have I been evaluated for a sleep disorder. My energy level at 2pm varies - some days it's good, and some days it's very low. There is no consistency.
Title: Re: starting Isentress/Truvada
Post by: denb45 on March 05, 2010, 11:27:53 pm
Hey madbrain, I've been on Isentress and Truvada for almost 3yrs. you shouldn't have any problems as it's easy on the stomach, i take the Truvada once-a-day, and the Isentress twice a day..you should be ok with this combo, give it a few months to work, as they have (or I've have NO side-effects) with this regimen  ;D
Title: Re: starting Isentress/Truvada
Post by: Okealyshire on March 06, 2010, 12:25:24 am
She gave me some Wellbutrin to add to my tegretol/celexa.

Let us know how the Wellbutrin works for you. When I got laid off from my job last May, I fell into minor depression: I lost interest in things that had always brought me enjoyment and I seemed to just wander around the house aimlessly. I started 300mg Wellbutrin XL and was very pleased with the results -- the dopamine boost was just what I needed. I stopped taking it shortly after I started a new job; I was on it for only two months.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 06, 2010, 01:55:29 am
Hey madbrain, I've been on Isentress and Truvada for almost 3yrs. you shouldn't have any problems as it's easy on the stomach, i take the Truvada once-a-day, and the Isentress twice a day..you should be ok with this combo, give it a few months to work, as they have (or I've have NO side-effects) with this regimen  ;D

Thanks Den. I'm "on the pill" as of an hour ago. So far so good .
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 06, 2010, 01:57:30 am
Let us know how the Wellbutrin works for you. When I got laid off from my job last May, I fell into minor depression: I lost interest in things that had always brought me enjoyment and I seemed to just wander around the house aimlessly. I started 300mg Wellbutrin XL and was very pleased with the results -- the dopamine boost was just what I needed. I stopped taking it shortly after I started a new job; I was on it for only two months.

I started 100mg Wellbutrin this morning, 100mg only. I'm supposed to go to 200mg after a week. This is in addition to 40mg celexa at night. I don't know if I can attribute it to that one pill, but I felt pretty good today, better than I have been in a while. Let's see how tomorrow will be since I have pretty consistently not had 2 good consecutive days for some time.
Title: Re: starting Isentress/Truvada
Post by: Okealyshire on March 06, 2010, 02:13:54 am
A ramp-up dose is normal for Wellbutrin. For the first seven days I took half of a 300mg tablet, then stepped up to the whole tablet each morning. At the beginning I felt rather zippy, as if it were similar to a mild amphetamine. That sensation disappeared after four days. When I decided to go off the Wellbutrin I returned to half doses for one week and then stopped completely.
Title: Re: starting Isentress/Truvada
Post by: denb45 on March 06, 2010, 10:57:41 am
I started 100mg Wellbutrin this morning, 100mg only. I'm supposed to go to 200mg after a week. This is in addition to 40mg celexa at night. I don't know if I can attribute it to that one pill, but I felt pretty good today, better than I have been in a while. Let's see how tomorrow will be since I have pretty consistently not had 2 good consecutive days for some time.


Antidepressants won't work that fast, you have to build up them in your blood levels, and they take about a week or so before that happens  ;) I was on Prozac for a while, and that is what my ID Doctor
told me about 10 to 12 yrs. ago  :)
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 06, 2010, 12:27:56 pm
Antidepressants won't work that fast, you have to build up them in your blood levels, and they take about a week or so before that happens  ;) I was on Prozac for a while, and that is what my ID Doctor
told me about 10 to 12 yrs. ago  :)

I know they aren't supposed to work this fast, but I really felt quite different yesterday, like a speed boost. I already had one antidepressant in my system (celexa), the wellbutrin was added. Maybe the combination just works faster.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 06, 2010, 01:18:24 pm
Did you start Isentress and Truvada?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 06, 2010, 01:19:30 pm
Did you start Isentress and Truvada?

Yes, last night. I just took my morning dose of Isentress too. So far, I haven't turned into a pumpkin. No side effects to speak of yet.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 06, 2010, 01:22:36 pm
With your viral load I would not be surprised if you were undetectable in a matter of hours. Not that there would be a blood test to confirm that but Isentress has been shown to work very fast.

When do you go in for blood work?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 06, 2010, 02:25:15 pm
With your viral load I would not be surprised if you were undetectable in a matter of hours. Not that there would be a blood test to confirm that but Isentress has been shown to work very fast.

When do you go in for blood work?

Yeah, I would not be surprised about that either, but Kaiser is not going to pay for a VL test within hours. I'm not sure yet when I will go for labs again, but with the HAART start, I would expect to go about a week before it's time to refill the med, so in about 3 weeks.
Title: Re: starting Isentress/Truvada
Post by: max123 on March 07, 2010, 12:29:47 pm
hi madbrain.

like others that posted, i was surprised to read that you were starting meds. i'm glad to read that you're feeling good and that you're tolerating the HAART well. i'll be soon coming due for my third set of labs since my diagnosis. while my vl had dropped considerably between the first and second labs, i can appreciate your mention of hiv associated fatigue and the memory issues...i've definitely experienced both. i'm unsure of whether this is to be expected in the first year or so, post seroconversion. while my doc and i have decided to wait on meds at this point, the truvada/isentress combo remains my first treatment choice so far in the event the decision to start meds needs to be addressed. my doc also mention a quad-pill that gilead will soon be marketing, but if i recall correctly, it contains sustiva. anyway, good luck with all and am looking forward to hearing good reports from you. max
Title: Re: starting Isentress/Truvada
Post by: denb45 on March 07, 2010, 03:56:25 pm
Yeah, I would not be surprised about that either, but Kaiser is not going to pay for a VL test within hours. I'm not sure yet when I will go for labs again, but with the HAART start, I would expect to go about a week before it's time to refill the med, so in about 3 weeks.


I Hated Kaiser 12 yrs ago when I had them, I actually quit and went to the County Hospital's HMO, (UCD) is what it was called, it was much better than what Kaiser had to offer for HIV+ care, I found most all of the doctors at Kaiser really didn't care much about how you felt about your own HIV care but, that's just IMO tho , after all ,that was 12 yrs ago when I lived in Northern California (Sacramento, CA) :D
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 07, 2010, 07:26:32 pm
I Hated Kaiser 12 yrs ago when I had them, I actually quit and went to the County Hospital's HMO, (UCD) is what it was called, it was much better than what Kaiser had to offer for HIV+ care, I found most all of the doctors at Kaiser really didn't care much about how you felt about your own HIV care but, that's just IMO tho , after all ,that was 12 yrs ago when I lived in Northern California (Sacramento, CA) :D

Well, where I live in Santa Clara county, the county hospital is absolutely terrible - my bf has been there, and I have been there with him, and Kaiser is great. I think Kaiser may not have had HIV specialists 12 years ago, but now they have them, 2 at my hospital alone, and one of them is my primary physician. There is an HIV/AIDS department with a full-time nurse, case worker, and therapist who runs the support group too. I wouldn't dream of leaving Kaiser, and the other insurance options through my work are much more expensive, especially if I want to cover my partner, tax wise.
Title: Re: starting Isentress/Truvada
Post by: Structure310 on March 09, 2010, 03:22:53 pm
Hi Madbrain,
I have a similar concern regarding the Isentress/Truvada combo's 12 hour dosage intervals.  I wake up early at around 6:45 am during the week for work and sleep in until 10 to 12 pm on the weekends.  That's the only reason I've been hesitant from switching from Truvada/Norvir/Reyataz.  My Dr. told me Isentress has a lower threshold for resistance as well, so it completely turned me off from going on it due to my irregular sleep schedule. Good luck with the dosage and keep us posted on the timing.  It'd be great if a once a day were developed for this combo. 
Title: Re: starting Isentress/Truvada
Post by: denb45 on March 09, 2010, 03:51:59 pm
Hi Madbrain,
I have a similar concern regarding the Isentress/Truvada combo's 12 hour dosage intervals.  I wake up early at around 6:45 am during the week for work and sleep in until 10 to 12 pm on the weekends.  That's the only reason I've been hesitant from switching from Truvada/Norvir/Reyataz.  My Dr. told me Isentress has a lower threshold for resistance as well, so it completely turned me off from going on it due to my irregular sleep schedule. Good luck with the dosage and keep us posted on the timing.  It'd be great if a once a day were developed for this combo.  

I take mine at Breakfast, and then again at Bedtime, just adjust your 12 hours to something that works for you.......it's easy to do, and NOTHING to be afraid of....... just saying  :D
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 09, 2010, 04:03:21 pm
Especially once it's in your system and one is undetectable, the timing does not have to be exact, it can be a few hours off.

I asked Dr. Gallant about this because I was traveling a few months ago and was going to place with a 3 hour time difference. He said it was not a big deal to continue my normal time even if meant I'd be taking the meds 3 hours later.

When I first started I was very exact about the time, and used two alarms. I have not missed a single dose but I'm not quite so exact about the time anymore. I basically take it from 7 to 9, both AM and PM.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 09, 2010, 06:01:27 pm
Hi Madbrain,
I have a similar concern regarding the Isentress/Truvada combo's 12 hour dosage intervals.  I wake up early at around 6:45 am during the week for work and sleep in until 10 to 12 pm on the weekends.  That's the only reason I've been hesitant from switching from Truvada/Norvir/Reyataz.  My Dr. told me Isentress has a lower threshold for resistance as well, so it completely turned me off from going on it due to my irregular sleep schedule. Good luck with the dosage and keep us posted on the timing.  It'd be great if a once a day were developed for this combo. 

The good news is so far my sleep schedule has been much improved the last 4 days. I have been able to sleep about 9hours per night, and take my morning dose of Isentress around 10am. I don't know if this is due to the HIV meds or the added Wellbutrin, or both, but I'm very happy about it.

I had zero side effects on saturday which was my first day. The bad news is that I started getting some heartburn and nausea on sunday morning. I wasn't sure if it was the meds or not. I had a heavy meal saturday night, including a half bottle of champagne, first drinks in a week. That's counter-indicated with the psych meds, but not the HIV meds.

I had some heartburn monday morning too, even without alcohol on sunday. Heartburn again in the evening, even before taking the evening dose. And this morning as well when I woke up, before I even took the morning dose. I was somewhat congested and almost vomitted in the shower - I had reflux, but nothing came out. But after that I was fine, no heartburn today and I feel fine at work so far. I hope these are temporary side effects. They could be caused by any of the new meds according to the side effects list.
Title: Re: starting Isentress/Truvada
Post by: tednlou2 on March 10, 2010, 01:37:18 am
Madbrain,

I have to tell you reading this has made me emotional.  I don't know why.  We don't know each other.  We did have a long back and forth conversation via PM's about HIV, your life, my life, depression, etc.  The only thing I can think of as to why this has made me emotional is that I feel more pressure to deal with my HIV sooner.  I think if you, a controller, has to start, then I need to wonder whether meds would help my fatigue and depression. 

How hard has this decision been?  I think if I were a controller, I would sit around pondering the decision and not make one at all.  I would probably just suffer with the fatigue instead of making that leap to meds.  I'm very inspired by your determination!

Best of luck,
Ted
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 10, 2010, 03:46:25 am
Ted,

Madbrain,

I have to tell you reading this has made me emotional.  I don't know why.  We don't know each other.  We did have a long back and forth conversation via PM's about HIV, your life, my life, depression, etc.  The only thing I can think of as to why this has made me emotional is that I feel more pressure to deal with my HIV sooner.  I think if you, a controller, has to start, then I need to wonder whether meds would help my fatigue and depression. 

How hard has this decision been?  I think if I were a controller, I would sit around pondering the decision and not make one at all.  I would probably just suffer with the fatigue instead of making that leap to meds.  I'm very inspired by your determination!

Best of luck,
Ted

It wasn't an easy decision, that's for sure ! But the fatigue was severe enough, and I had to do something about it. My HIV specialist has been telling me for a while (years) that it wouldn't be a bad idea to start HAART even with good numbers due to the fatigue symptoms. 3 years ago it took 3 months for my fatigue to disappear, and psych meds couldn't do anything about it. I was so dysfunctional that I couldn't take the chance this time to wait that long, so I decided to go all-out and approach it from both the psych and HIV angles. Time will tell if I made the right choice. I don't expect any HIV lab change expect my VL to go to undetectable.

I don't know if the recent energy boost is due to the Wellbutrin or the Truvada+Isentress, or to both, but it is a fairly big change to be able to function 16 hours a day as opposed to barely 12. I hope it lasts, and the side effects disappear over time.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 10, 2010, 07:54:41 am
Madbrain, I was wondering if you could describe your fatigue symptoms. These things are so subjective and it would be great to be able to compare with someone else. I sometimes get very sleepy in the middle of the day but I always thought this was just normal but maybe it's not.  Thanks.

Also, is the Wellbutrin a generic version? Are there different versions of Wellbutrin, apart from generic or name brand?
Title: Re: starting Isentress/Truvada
Post by: Okealyshire on March 10, 2010, 01:05:12 pm
Also, is the Wellbutrin a generic version? Are there different versions of Wellbutrin, apart from generic or name brand?

Wellbutrin is a name-brand version of the drug bupropion (http://en.wikipedia.org/wiki/Bupropion). It comes in various strengths and durations; most people derive the best benefit from the 300mg XL version -- it's an extended release tablet that lasts a full day. There's some debate over whether the generic equivalents function as effectively as the name-brand; during the time I was using it I switched from the name-brand to a generic and didn't notice a change. If you do, you can always request your pharmacist to try a different generic manufacturer. IIRC, the generic comes from three different companies.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 10, 2010, 01:12:55 pm
Wellbutrin is a name-brand version of the drug bupropion (http://en.wikipedia.org/wiki/Bupropion). It comes in various strengths and durations; most people derive the best benefit from the 300mg XL version -- it's an extended release tablet that lasts a full day. There's some debate over whether the generic equivalents function as effectively as the name-brand; during the time I was using it I switched from the name-brand to a generic and didn't notice a change. If you do, you can always request your pharmacist to try a different generic manufacturer. IIRC, the generic comes from three different companies.


Thanks for that info., I'm considering using it short term the way you did.

madbrain: sorry for the hijack.
Title: Re: starting Isentress/Truvada
Post by: Assurbanipal on March 10, 2010, 01:50:18 pm
A little late here, but just wanted to wish you well on the drugs.  You've always seemed a very organized and focused sort, so I'm sure you will do great with respect to adherence and all. 

Best

A
Title: Re: starting Isentress/Truvada
Post by: David_CA on March 10, 2010, 02:17:08 pm
I'm a bit curious as to why introduce all the 'variables' at the same time.  By that I'm referring to HAART and antidepressant.  I understand the need to cure the fatigue, but will the reduction in an already very low viral load or the Wellbutrin be the one that's helping? 

I think I would suffer mild to moderate fatigue if not for Adderall.  Dr.'s don't seem to like to prescribe it for much of anything but ADHD, but I can tell you it does help.  At any rate, good luck on the meds!
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 10, 2010, 02:25:46 pm
Madbrain, I was wondering if you could describe your fatigue symptoms. These things are so subjective and it would be great to be able to compare with someone else. I sometimes get very sleepy in the middle of the day but I always thought this was just normal but maybe it's not.  Thanks.

The fatigue has happened at random times, whether I was at work, or at home on the week-end. It would most often hit in the afternoon, where I felt a sudden nearly uncontrollable urge to sleep.
If I went through a full day's work, by the time I got home in the evening I was fully wasted and wanted nothing to do but go to bed. Waking up was extremely difficult, even if I slept a large number of hours consistently (10+). On the days that I slept less, I was merely a zombie.
I was pretty much alternating between some decent days and some horrible days where I just couldn't manage. For the last month I have been unable to clean my house, practice piano or take any lessons, and I have only gone to exercise a couple of times. I work on the 8th floor and I tried to take the stairs up and down a few times instead of the elevaor, but didn't last long. A week ago I was so wasted after work I couldn't even walk down.

I also had some other non-pain but very weird symptoms - last week my left foot hurt like hell for 24 hours, then it went away, for no good reason I could discern. Same with my wrist 10 days ago on the weekend. I took my watch off because I thought it was contributing to the pain, but I had that watch for 5+ years ... I just put it back a few days ago. Also, sometimes I would be stuck on a problem at work, walk over to a coworker to inquire, but only a minute later I had no idea what I walked over for, until I came back to my cube. My doc was reluctant to say these were neurological symptoms of HIV because they were so short-lived, but I don't know what else it could be. I can see depression causing the forgetfulness, but not the pain symptoms.

Quote
Also, is the Wellbutrin a generic version? Are there different versions of Wellbutrin, apart from generic or name brand?

It's a generic for Wellbutrin SR. I started on 100mg last friday, I'm supposed to go to 200mg this coming friday. I'm not sure if I will because I'm a little hyper already. Being bipolar, it's really a tough line to walk between depressed and manic. My other psych meds are tegretol 600mg and celexa 40mg, all generic.
Title: Re: starting Isentress/Truvada
Post by: skeebo1969 on March 10, 2010, 02:31:38 pm

   Mad,

      I also echo everyone's surprise that you have started meds.  I hope you have continued success.  I was on Wellbutrin at one time and could not take the metal taste it left in my mouth.  You might have had difficulty with the alcohol due to your body  just recently being introduced to the meds...  of course you could be right about it interacting with your psyche meds also.      
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 10, 2010, 02:43:27 pm
I'm a bit curious as to why introduce all the 'variables' at the same time.  By that I'm referring to HAART and antidepressant.  I understand the need to cure the fatigue, but will the reduction in an already very low viral load or the Wellbutrin be the one that's helping? 

I gave the psych meds a chance, I had several adjustments of them before (celexa increase), the Wellbutrin addition was only the latest change to them. If I wasn't working, I might have tried the wellbutrin first before the HAART for a few weeks, but I just couldn't live with such a low energy level for much longer.
My doc said it wasn't just the low viral load that could affect me. The virus is known to replicate at different rates in other parts of the body, such as the gut, brain, CNS, and other places that the blood VL test doesn't measure. So, my goal in starting HAART was not just to see my blood VL go down but to help stop the damage in those other places.

Quote
I think I would suffer mild to moderate fatigue if not for Adderall.  Dr.'s don't seem to like to prescribe it for much of anything but ADHD, but I can tell you it does help.  At any rate, good luck on the meds!

Thanks.
Title: Re: starting Isentress/Truvada
Post by: tednlou2 on March 11, 2010, 12:57:28 am
Thanks for the clarification on your fatigue.  It is obvious it was life-altering fatigue.  Mine isn't that bad.  I have days where I feel really good and others where I just feel rundown.  I've wondered whether it is depression, the HIV, or both.  I don't feel I'm getting forgetful.  I have noticed when I write things on here and other places, I make errors like writing "our" instead of "are", "their" instead of "there", "here" instead of "hear", and other mistakes like that.  I'm probably just making too much of it and we all make errors like that.     

I've noticed many docs are combining Wellbutrin with other depression meds.  I know someone who takes that with Cymbalta.  I guess there are studies 2 are sometimes better than one.  About the metallic taste-- I got that with most depression meds.  I also know about generic vs brand name.  I remember after having back surgery, I was given a different generic pain med than the one I had been getting.  It seemed like I was just taking a sugar pill.  The pharmacist asked me what I thought of the new generic.  He said he had gotten many complaints about it.  He said although the active ingredient has to be the same, the other ingredients and fillers may cause the med to not break down like it should.  I know most HIV drugs don't have a generic yet--almost all of them don't I think.  It will be interesting to see if people experience different results once generics do come available.  But, I'm getting off topic here.

Again, I wish the best of luck.  It sounds like you're already seeing results.   
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 11, 2010, 10:02:35 am

It's a generic for Wellbutrin SR. I started on 100mg last friday, I'm supposed to go to 200mg this coming friday. I'm not sure if I will because I'm a little hyper already. Being bipolar, it's really a tough line to walk between depressed and manic. My other psych meds are tegretol 600mg and celexa 40mg, all generic.


Is the Wellbutrin SR a once a day pill? I read online it's twice a day and that Wellbutrin XL is once a day.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 11, 2010, 02:01:41 pm
Is the Wellbutrin SR a once a day pill? I read online it's twice a day and that Wellbutrin XL is once a day.

At this time I'm taking it once a day only, in the morning. It may have been prescribed that way because I'm taking it in combination with another antidepressant, Celexa.
Title: Re: starting Isentress/Truvada
Post by: tednlou2 on March 15, 2010, 01:26:58 am
I've been reading about viral loads and fatigue.  I thought this was a good place to post this as it has to do with Mad's situation--or maybe not.  

I've been reading how people with low viral loads probably have an immune system that is more taxed, because it is working so hard to keep that viral load low.  It was saying this may be just as bad as having a high viral load.  Okay, this makes sense and I'm not breaking news here to most.  

I had always thought a low viral load was something very good to have--well, I know it has to be better to have a low one versus a really high one.  It does make a person with a low or moderate viral load wonder whether our bodies are being really overworked and leading to a lot of fatigue and maybe we aren't in as good of shape as we think.  

I was just wondering if anyone has more information on this--whether having a low viral load may be just as bad as having a higher one--even if the CD4s are high for both.  Another interesting thing I read is that when you know your body is being really overworked to control the virus, people often lose weight.  Well, I've actually gained like 20 pounds for some reason.  This could be due to withdrawing from things I use to do.  Having said that, the info I was reading was saying people often lose weight even if they are eating a lot and not doing a lot of exercise.

I wish I could find the article.  I know it was also just mentioned in a question to Dr McGowan on thebody.  Edit:  The part about organ damage from an overworked immune system is a little concerning that Dr. McGowan talks about.

http://www.thebody.com/Forums/AIDS/Meds/Current/Q207326.html
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 15, 2010, 02:28:21 am
I've been reading how people with low viral loads probably have an immune system that is more taxed, because it is working so hard to keep that viral load low.  It was saying this may be just as bad as having a high viral load.  Okay, this makes sense and I'm not breaking news here to most.  

This is something my doctor mentioned, but I haven't read much about it before.

Quote
I was just wondering if anyone has more information on this--whether having a low viral load may be just as bad as having a higher one--even if the CD4s are high for both.  Another interesting thing I read is that when you know your body is being really overworked to control the virus, people often lose weight.  Well, I've actually gained like 20 pounds for some reason.  This could be due to withdrawing from things I use to do.  Having said that, the info I was reading was saying people often lose weight even if they are eating a lot and not doing a lot of exercise.

FYI, I gained a lot of weight too in my first year with HIV, you can check in my older posts from 2007. I went from about 140 to 165, which was overweight for someone 5'6. This coincided with a 3 months episode of severe fatigue. I have been able to work off some of it, but it tends to come back if I don't exercise. Last summer I went down to 143. The last few months with the new job and the fatigue, and no exercise, I went up to 150. I'm not sure if I can make any kind of conclusion about the relationship between the weight gain and HIV. I think it's probably due to other things like slowing metabolism as one gets older, and dining out a little too richly in 2007 .

Quote
I wish I could find the article.  I know it was also just mentioned in a question to Dr McGowan on thebody.  Edit:  The part about organ damage from an overworked immune system is a little concerning that Dr. McGowan talks about.

http://www.thebody.com/Forums/AIDS/Meds/Current/Q207326.html

I think this is somewhat different because that patient clearly has had a CD4 and % decline and is actually within the guidelines to start HAARt. I had nothing measurable of the sort over the years so far. It is still interesting that the patient had an often undetectable VL, but experienced the CD4 decline anyway.

So far my experience with the additional meds is very good. I haven't had any fatigue event at all over 9 days. I can't say specifically which med is helping. I did go up to 200mg on the wellbutrin this morning. I don't seem to be hyper now. But I had enough energy to clean my house and work out this weekend. I will probably resume my music lessons shortly.

The one negative is that I continue to have nausea, mostly in the morning when I wake up. It tends to go away after I eat. My guess is that it is due to the truvada.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 15, 2010, 10:57:32 am
I was wondering if Wellbutrin can cause insomnia? Not sure if you've had insomnia but I guess even if you did it would be hard to pinpoint the culprit?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 15, 2010, 03:31:10 pm
I was wondering if Wellbutrin can cause insomnia? Not sure if you've had insomnia but I guess even if you did it would be hard to pinpoint the culprit?

Yes, it can cause insomnia. I'm only on 200mg though which is low. My sleep has gone from 12-15hrs down to 8-9 which is fairly normal, but I don't have insomnia.

http://www.drugs.com/sfx/wellbutrin-side-effects.html
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 26, 2010, 07:13:55 pm
The nausea intensified unfortunately. I had to get some Ondansetron on tuesday night since it became very bad - all day monday and tuesday. My doc thinks it's caused by the wellbutrin. My psychiatrist is tapering me off wellbutrin. I hope the nausea will go away.

I also experienced the strange metallic taste last friday night. I ate a slice of blueberry pie from Trader Joe about one hour after taking the meds. I know the taste of that pie very well, I buy it frequently. It never tasted like metal before. I guess I need to remember to eat before taking the meds, not right after. It's easier on the stomach that way too.

I went to the lab yesterday. CD4 came back today at 592 / 30%. That's actually a bit lower than before, especially the %. I stopped most of my supplements so this may be the reason. The first week I was only on fiber, caffeine and melatonin. This week I added back the vitamin D, calcium, multi-vitamin, magnesium and omega-3. I see my doc on thursday by which time the VL should be back. Hopefully undetectable. I haven't missed a dose of meds and I don't think I have gone more than 14 hrs between 2 isentress.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 26, 2010, 07:43:24 pm
I know everyone is different but I'm on the same combo and not experiencing any side effects at all, the same goes for so many others. I have a feeling in your case your doc is right and it probably is the Wellbutrin. It could be the Wellbutrin not on it's own but interacting with the other meds, be it Isentress/Truvada or whatever else you take prescription-wise.

You really want to make absolutely sure about Isentress/Truvada because it's such a good combo that it's only worth switching if one is absolutely sure they are the side effects culprits (but you probably already know that). ;)

You mentioned your CD4s but not the viral load, I assume it's undetectable.

I'm so suggestible that I have to go out and get some blueberry pie from Trader Joe's.

Title: Re: starting Isentress/Truvada
Post by: Miss Philicia on March 26, 2010, 07:47:20 pm
I would never have begun a new HAART regimen at the same time as an anti-depressant just to avoid this scenario you're now encountering.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 26, 2010, 07:51:01 pm
I would never have begun a new HAART regimen at the same time as an anti-depressant just to avoid this scenario you're now encountering.

What do you expect him to do, die of depression? He's been on antidepressants for years I believe.

EDITED TO ADD:

I guess you mean starting the Wellbutrin. Yea, probably so.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 26, 2010, 08:16:54 pm
I know everyone is different but I'm on the same combo and not experiencing any side effects at all, the same goes for so many others. I have a feeling in your case your doc is right and it probably is the Wellbutrin. It could be the Wellbutrin not on it's own but interacting with the other meds, be it Isentress/Truvada or whatever else you take prescription-wise.

Well, there is no known interaction between the Wellbutrin and any of the other meds I take.

Quote
You really want to make absolutely sure about Isentress/Truvada because it's such a god combo that it's only worth switching if one is absolutely sure they are the side effects culprits (but you probably already know that). ;)

Yes, I'm not going to switch away from it unless I am sure. I see the doc next week to discuss whether to refill, or how long. I may not completely know by next week what to do.

Quote
You mentioned your CD4s but not the viral load, I assume it's undetectable.

No, it's not back yet. Kaiser takes more than one day for the VL.

Quote
I'm so suggestible that I have to go out and get some blueberry pie from Trader Joe's.

lol
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 26, 2010, 08:29:27 pm
Well, there is no known interaction between the Wellbutrin and any of the other meds I take.


I think there doesn't have to be an official pharmacological or pharmacokinetic interaction per se for a drug to possibly elicit a side effect response when used with certain other meds.

You should also try and take the HIV meds by themselves and take everything else you take at least 2 hours before or after if you can.

Is the TJ blueberry pie sold frozen or is it in the pastry section?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 26, 2010, 08:45:20 pm
You should also try and take the HIV meds by themselves and take everything else you take at least 2 hours before or after if you can.

Not practical, I have too many pills to take.

Quote
Is the TJ blueberry pie sold frozen or is it in the pastry section?

Frozen.
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 26, 2010, 08:48:16 pm
I would never have begun a new HAART regimen at the same time as an anti-depressant just to avoid this scenario you're now encountering.

Well, you weren't in my shoes. I was severely depressed and physically limited. I wasn't sure about the root causes. I now think it's likely the fatigue was from the HIV, and that led to depression. Not the other way around. But both the fatigue and depression needed to be addressed, and they were. My mood is much better now that I actually have energy, so I'm being taken off the Wellbutrin. And hopefully the nausea will disappear too.
Title: Re: starting Isentress/Truvada
Post by: betonet on March 30, 2010, 05:47:35 am
Madbrain, you are the man that knows what's best for your body, so maybe you made the right choice - starting HAART. Hope you will get much better now!

About this severe fatigue you experienced - could it be from all the supplements you took before starting HAART? As I remember you took a lot of different herbs and supplements. Maybe your immune system was "overloaded" from them and their interactions so this lead to the fatigue, how do you think?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 30, 2010, 07:51:51 pm
Madbrain, you are the man that knows what's best for your body, so maybe you made the right choice - starting HAART. Hope you will get much better now!

About this severe fatigue you experienced - could it be from all the supplements you took before starting HAART? As I remember you took a lot of different herbs and supplements. Maybe your immune system was "overloaded" from them and their interactions so this lead to the fatigue, how do you think?

I don't know. I have been taking a lot of them for years. And the last time I had severe fatigue - 3 years ago, which lasted 3 months - I was only taking a couple supplements (multi/selenium). Actually the fatigue resolved right around the time I started the supplements.

Unfortunately I am having a very hard time tolerating the nausea from HAART. I skipped dinner last night and took the meds. About an hour later, severe nausea started. It hasn't stopped yet - it lasted through the night and all day at work. And the ondansetron hasn't helped. I know wellbutrin is not the main cause now unfortunately - I still take wellbutrin in the morning only, and a lower dose as I'm tapering off.

I emailed my doc, he thinks the next most likely cause of nausea is Isentress, not Truvada. I will see him thursday, but I don't think there is any way I will continue this regimen. The only thing that reduces/eliminates the nausea is eating a large meal before taking the meds. But with Isentress having to be taken twice a day on schedule, that's pretty hard to do. It's supposed to be OK to take without food.

The supplements certainly caused nausea without food too, but I didn't take have to them on a schedule - my meals were at irregular hours, and if I skipped one, I would skip the supplements too.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 30, 2010, 08:12:03 pm

Unfortunately I am having a very hard time tolerating the nausea from HAART. I skipped dinner last night and took the meds. About an hour later, severe nausea started. It hasn't stopped yet - it lasted through the night and all day at work. And the ondansetron hasn't helped. I know wellbutrin is not the main cause now unfortunately - I still take wellbutrin in the morning only, and a lower dose as I'm tapering off.
 

Is your evening dose just Isentress or is that the Isentress/Truvada dose?
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 30, 2010, 08:15:55 pm
Is your evening dose just Isentress or is that the Isentress/Truvada dose?

I take Isentress/Truvada in the evening.

And tegretol/celexa/elmiron/prilosec. But I have been on those 4 for many years and they never caused any nausea, with or without food.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 30, 2010, 08:52:00 pm
I take Isentress/Truvada in the evening.


My pharmacist recommended when I started the meds to start with a morning dose of Isentress/Truvada and then in the evening to take the Isentress-only dose. He said that Truvada could possibly cause sleep issues and nausea.  As it turns out, I didn't experience adverse effects from either the morning or the evening dose but he did say that issues with sleep and nausea if they happened might resolve after a short time.

I guess it depends how long you are able to deal with it before it possibly resolves.

Have you noticed such a severe reaction after taking your morning Isentress-only dose? Do you have more noticeable nausea about an hour later?

The other approach you can consider, which is unorthodox but not as far-fetched as it might sound is once a day dosing. There are people on these forums who are taking their Isentress/Truvada all in one dose (both Isentress pills and the one Truvada once a day) because it seems that the clinical trial looking at once a day dosing is going well.

There have been a few threads discussing this, it has to do with Isentress's "off-rate" or the length of time it binds to integrase. Carpediem98 is someone on here who takes it once a day and is doing well. And another member here is in the once daily clinical trial.

Of course you might think it's counter-intuitive to try once a day as far as the nausea but the advantage would be if you are able to take them alone, without taking any other meds at the same time since the nausea could be due to the fact that you are taking other meds along with them.

LINKS:

http://forums.poz.com/index.php?topic=30227.msg371918#msg371918

http://forums.poz.com/index.php?topic=28398.msg349832#msg349832
Title: Re: starting Isentress/Truvada
Post by: madbrain on March 30, 2010, 09:43:04 pm
My pharmacist recommended when I started the meds to start with a morning dose of Isentress/Truvada and then in the evening to take the Isentress-only dose. He said that Truvada could possibly cause sleep issues and nausea.  As it turns out, I didn't experience adverse effects from either the morning or the evening dose but he did say that issues with sleep and nausea if they happened might resolve after a short time.

Well, everyone reacts differently to the meds. I have some good days without any nausea, but mostly on those days I had a big breakfast and dinner.

I'm not having sleep issues due to the Truvada.

Quote
I guess it depends how long you are able to deal with it before it possibly resolves.

It's going to be a month, I only have enough pills until saturday, and unfortunately no improvement in sight.

Quote
Have you noticed such a severe reaction after taking your morning Isentress-only dose? Do you have more noticeable nausea about an hour later?

I haven't exactly timed it. Sometimes I wake up with nausea even before the morning dose. Sometimes I don't have it when I wake up, and I will have it after taking the morning dose, depending on how much I eat.

Quote
The other approach you can consider, which is unorthodox but not as far-fetched as it might sound is once a day dosing. There are people on these forums who are taking their Isentress/Truvada all in one dose (both Isentress pills and the one Truvada once a day) because it seems that the clinical trial looking at once a day dosing is going well.

Well, that might make some sense if I can take it once a day with a big meal, but still, I do skip meals occasionally - yesterday night I snacked at work and I wasn't hungry, which is why I skipped dinner.
I was actually about to head to the gym, when the nausea started very suddenly and in a bad way.
And today I was in a 4 hour meeting at work and I felt like puking the whole time.

Quote
Of course you might think it's counter-intuitive to try once a day as far as the nausea but the advantage would be if you are able to take them alone, without taking any other meds at the same time since the nausea could be due to the fact that you are taking other meds along with them.

It is possible that it is an interaction with the other meds, but I think it's more likely related to the quantity of food I have, as far as I can tell. When you have nausea, you are less likely to eat a lot in the first place after that. I could not eat a lot today. And then the side effects from the meds worsen. I don't see a good solution except change of treatment.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 31, 2010, 12:26:11 am
Do you know what you're going to try next? I've read Prilosec and Reyataz (and maybe other PIs too) are contraindicated.

Title: Re: starting Isentress/Truvada
Post by: madbrain on March 31, 2010, 12:45:44 am
Do you know what you're going to try next? I've read Prilosec and Reyataz (and maybe other PIs too) are contraindicated.

Prilosec is contra-indicated with lots of things. So is tegretol. I don't think there is another combo available for me without changing some of my other meds.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on March 31, 2010, 02:35:25 pm
I'm not sure how urgent it is for you to not miss any doses of the other meds but if at all possible I think it would be worth it as a test if for just one day you are able to take only the HIV meds, without the other meds. To at least rule out that the nausea could be due to taking all these meds together and not to the HIV meds by themselves.

I have a strong suspicion that if you took only the HIV meds you would not experience the nausea. At least you'd know one way or the other.

Title: Re: starting Isentress/Truvada
Post by: madbrain on March 31, 2010, 02:47:00 pm
I'm not sure how urgent it is for you to not miss any doses of the other meds but if at all possible I think it would be worth it as a test if for just one day you are able to take only the HIV meds, without the other meds. To at least rule out that the nausea could be due to taking all these meds together and not to the HIV meds by themselves.

I have a strong suspicion that if you took only the HIV meds you would not experience the nausea. At least you'd know one way or the other.

The other meds can definitely be skipped for a day. But I'm not sure how long they stay in the system, I may have to be off them longer to rule out interactions. I'm seeing my doc tomorrow and will see what he says.
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 01, 2010, 01:55:19 pm
My doc took me off HAART this morning due to the side effects. This is supposed to be a 2 weeks structured interruption. The plan is to do another VL in 2 weeks and do a tropism assay to see if Maraviroc is suitable, and HLA B5701 gene testing to see if Epzicom is suitable. The tropism assay requires some virus though, my doc said 500 copies minimum. Of course I'm already undetectable now. It may be a while before my VL rebounds high enough to do the tropism assay - the last time I was over 500 copies was on 10/14/2009. If it takes too long, then I would have to go off carbamezepine to be able to try other HAART options.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on April 01, 2010, 02:06:02 pm
My doc took me off HAART this morning due to the side effects. This is supposed to be a 2 weeks structured interruption. The plan is to do another VL in 2 weeks and do a tropism assay to see if Maraviroc is suitable, and HLA B5701 gene testing to see if Epzicom is suitable. The tropism assay requires some virus though, my doc said 500 copies minimum. Of course I'm already undetectable now. It may be a while before my VL rebounds high enough to do the tropism assay - the last time I was over 500 copies was on 10/14/2009. If it takes too long, then I would have to go off carbamezepine to be able to try other HAART options.


Thanks for the update. Sounds like a reasonable plan of action.

Here's a recent article that might be of interest:

Drug Resistance Testing Is Effective Even With Low Virus Levels

LINK:

http://www.poz.com/articles/hiv_resistance_drug_761_18231.shtml
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 01, 2010, 02:32:45 pm
Quote
Here's a recent article that might be of interest:

Drug Resistance Testing Is Effective Even With Low Virus Levels

LINK:

http://www.poz.com/articles/hiv_resistance_drug_761_18231.shtml

Thanks. I'm not sure if this applies to the tropism assay, however, since it is different than drug resistance.

I also asked my doc to look into the possibility of once a day isentress. If I am not forced to take it at the same time each day and can take it with my heaviest meal, then I might be OK with that too, but I'm not sure. I required solid food (bread, cakes) to avoid nausea. A light breakfast with yogurt and juice wouldn't do it.
Title: Re: starting Isentress/Truvada
Post by: CallMeSid on April 01, 2010, 10:43:28 pm
I'm sorry to hear that you're having side effects.  I trust that this will all work out for you.

I have a question about this sentence:  "This is supposed to be a 2 weeks structured interruption."  How exactly is it "structured"?  I thought "structured interruption" referred to a treatment plan that called for periodic cessations of ARV therapy determined by meeting certain lab values identified in advance and the interruptions were NOT dictated by the emergence of side effects.  Did you and your MD plan before you started the meds to stop for 2 weeks once you hit a VL <75?  Or did you you two decide to stop now due to your side effects?  If it's the latter, it's not a "structured interruption" based upon my understanding of that (largely outdated) term.
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 02, 2010, 12:21:40 am
I'm sorry to hear that you're having side effects.  I trust that this will all work out for you.

I have a question about this sentence:  "This is supposed to be a 2 weeks structured interruption."  How exactly is it "structured"?  I thought "structured interruption" referred to a treatment plan that called for periodic cessations of ARV therapy determined by meeting certain lab values identified in advance and the interruptions were NOT dictated by the emergence of side effects.  Did you and your MD plan before you started the meds to stop for 2 weeks once you hit a VL <75?  Or did you you two decide to stop now due to your side effects?  If it's the latter, it's not a "structured interruption" based upon my understanding of that (largely outdated) term.

No, it wasn't the plan before. I was supposed to stay on it. I wrote that the interruption was structured in the sense that all the components of the combo are stopped at once. Otherwise, if one is continued without the other, resistance would develop. It's not structured in the sense that it wasn't planned.
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 08, 2010, 09:58:28 pm
Well, plans have a way of not working out ...

On sunday morning, after 3 days off HAART, I still experienced nausea. Not as bad as before, but still annoying, until I had lunch. And to top it off, on sunday afternoon, my fatigue came back with a vengeance, something that hadn't happened for a month. Not a great way to spend Easter ! I was planning to do some more piano recordings, but I had to sleep instead.

I think the morning nausea was caused by a change I made in my supplement schedule. Before I started HAART on March 5, I used to take about 20 supplements, most of which I took with lunch and dinner, except for caffeine in the morning, melatonin at night, and fiber, which I took without food usually.

When I started HAART, I eliminated the 17 supplements that I used to take with meals 2x a day - I was down to just the caffeine/melatonin/fiber. I still had some nausea which were caused by the meds.

But around my third week on HAART I started adding back some of the supps - the vitamin D and calcium, which I thought were important due to the effects of my previous meds on vitamin D, and of the HAART which is listed as effecting bones as well. I also added back magnesium which should be taken together with calcium, and my multi which is generally recommended for PLWHIV. But I got lazy, and when I added these 4 supps back, I didn't spend the time to refill my daily take-out vials, and was instead taking them at home in the morning and evening, sometimes without food.
On sunday morning I took them on an empty stomach, and that's when the nausea started. I'm sure now that these 4 supps were the cause of the nausea sunday. I just cannot handle them on an empty stomach. I could handle them fine (and even with 13 more supps) with food, but just not on an empty stomach. And certainly not combined with the HAART that was also giving me some nausea by itself without those supps the first 2 weeks.

I spent some time emailing my doc back and forth monday about this. The result - I stopped those 4 supplements again, and refilled 1 month of HAART monday night after work to give it another try. I'm now taking the Isentress only once a day, at night, together with the Truvada, when my stomach is usually fuller, since I often skip breakfast. My doc said there wasn't a lot of data on the 1/day Isentress, but he has one patient in the pilot study who is doing OK so far. I'm willing to take that chance if it means lower side effects. I have had no nausea so far the last 3 nights or days since I restarted, but I have been having heavy dinners each time. If I remain free of side effects for the next month and the VL stays undetectable, I will get a 3 months supply of HAART then. And I will only add back supplements one a time, and take them with food only.
Title: Re: starting Isentress/Truvada
Post by: Hellraiser on April 08, 2010, 10:11:43 pm
My god man, how many pills a day are you taking?
Title: Re: starting Isentress/Truvada
Post by: indigolime on April 09, 2010, 01:36:22 am
I didn't think I would post this anytime soon, but I'm going to start meds also.

I have had a lot of fatigue for about a month, enough to be nearly non-functional. The fatigue can be traced partly to stress of starting a new job, but I have handled similar amounts of stress much better before (pre-HIV).

Despite my excellent labs, my doc thinks the HIV plays a factor in my fatigue, and not only the stress and depression, and that my body is tired from fighting the HIV. I also have some minor forgetfullness which may be some neurological symptom of HIV - or not.
He has been telling me the past few visits that for people who are symptomatic, even with good labs, it is better to treat the HIV than not.

So, I finally gave in. He wrote me a prescription for Isentress and Truvada. I already picked it up. I may start them tonight, or tomorrow night.

He wanted something that crossed the blood brain barrier, since my blood VL is already so low and any med would probably get me undetectable quickly as I have no resistance. My docs' first choice was Prezista/Norvir/Truvada which is once a day, but there was a contraindication between all P.I.s and tegretol. So he went with Isentress/Truvada - twice a day. I hope my sleep schedule improves soon so I can take it at somewhat regular intervals, since my nights vary from 7 to 15 hours currently and that may make the interval difficult to keep regular for Isentress.

I hope I'm making the right call since there is not much data in people with good labs starting meds.

Title: Re: starting Isentress/Truvada
Post by: madbrain on April 09, 2010, 02:07:13 am
My god man, how many pills a day are you taking?

At the moment, 6 prescriptions adding up to 12, and 3 supplements adding up to 6, so 18 total.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on April 27, 2010, 11:50:20 pm
What's the update. madbrain? Are you taking both Isentress pills together once a day?
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 28, 2010, 01:11:46 am
What's the update. madbrain? Are you taking both Isentress pills together once a day?

Yes, and I have had no more side effects to speak of. I went to the lab last night. If I'm still undetectable, I will get a 3 months refill next monday when I get the result.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on April 28, 2010, 12:28:49 pm
Yes, and I have had no more side effects to speak of. I went to the lab last night. If I'm still undetectable, I will get a 3 months refill next monday when I get the result.


Sounds good, please keep us posted. What time do you take Isentress/Truvada? Was there any interruption in treatment while you were figuring things out?
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 28, 2010, 06:44:00 pm
Sounds good, please keep us posted. What time do you take Isentress/Truvada? Was there any interruption in treatment while you were figuring things out?

Yes, there was a 5 day interruption towards the end of last month. I'm taking the meds after dinner, between about 9pm and midnight.
Title: Re: starting Isentress/Truvada
Post by: madbrain on April 30, 2010, 06:32:56 pm
Well, I got the VL back and I'm still undetectable even after 3 weeks on the 1/day Isentress schedule, so I'm going to get the 100 days refill tonight.
Title: Re: starting Isentress/Truvada
Post by: Inchlingblue on April 30, 2010, 06:38:13 pm
Well, I got the VL back and I'm still undetectable even after 3 weeks on the 1/day Isentress schedule, so I'm going to get the 100 days refill tonight.


yaaay!
Title: Re: starting Isentress/Truvada
Post by: ruralguy on May 01, 2010, 09:52:26 am
I know it is a big decision Madbrain and wanted to wish you good luck with this combo. 

All the best, ruralguy
Title: Re: starting Isentress/Truvada
Post by: madbrain on May 01, 2010, 08:07:07 pm
I know it is a big decision Madbrain and wanted to wish you good luck with this combo. 

All the best, ruralguy

Thanks !

I really think it was the right one now. I haven't felt as good as I did in recent weeks for a while.
Title: Re: starting Isentress/Truvada
Post by: Billy B on May 01, 2010, 08:17:54 pm
Thanks !

I really think it was the right one now. I haven't felt as good as I did in recent weeks for a while.

Madbrain- Does your doctor know that you are taking all your meds once a day? I asked mine about it and he wasn't too keen on the idea although the Merck rep told him that some people were doing it with success.
Billy
Title: Re: starting Isentress/Truvada
Post by: madbrain on May 02, 2010, 06:36:18 pm
Madbrain- Does your doctor know that you are taking all your meds once a day? I asked mine about it and he wasn't too keen on the idea although the Merck rep told him that some people were doing it with success.
Billy

Yes, he is aware of it. This is why the VL test was re-ordered early. I'm not surprised it's working for me given how low my VL was to begin with.
Title: Re: starting Isentress/Truvada
Post by: Billy B on May 02, 2010, 11:50:20 pm
Yes, he is aware of it. This is why the VL test was re-ordered early. I'm not surprised it's working for me given how low my VL was to begin with.



I am really happy that it is working out so well for you.
Peace,
Billy