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Author Topic: starting Isentress/Truvada  (Read 12322 times)

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Offline madbrain

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starting Isentress/Truvada
« 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.

Offline next2u

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Re: starting Isentress/Truvada
« Reply #1 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
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3

Offline aztecan

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Re: starting Isentress/Truvada
« Reply #2 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
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline tommy246

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Re: starting Isentress/Truvada
« Reply #3 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 .
« Last Edit: March 05, 2010, 04:24:20 PM by tommy246 »
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #4 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.


Offline madbrain

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Re: starting Isentress/Truvada
« Reply #5 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.

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #6 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.
« Last Edit: March 05, 2010, 06:38:16 PM by Inchlingblue »

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #7 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.


Offline WillyWump

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Re: starting Isentress/Truvada
« Reply #8 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
POZ since '08

Last Labs-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline CallMeSid

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Re: starting Isentress/Truvada
« Reply #9 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
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Online Jeff G

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Re: starting Isentress/Truvada
« Reply #10 on: March 05, 2010, 07:39:28 PM »
Wishing you the best . I'm sending you some positive energy until the meds kick in ;-)   

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #11 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.

Offline denb45

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Re: starting Isentress/Truvada
« Reply #12 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
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Okealyshire

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Re: starting Isentress/Truvada
« Reply #13 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.

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #14 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 .

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #15 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.

Offline Okealyshire

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Re: starting Isentress/Truvada
« Reply #16 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.

Offline denb45

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Re: starting Isentress/Truvada
« Reply #17 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  :)
« Last Edit: March 06, 2010, 11:00:29 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #18 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.

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #19 on: March 06, 2010, 01:18:24 PM »
Did you start Isentress and Truvada?

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #20 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.

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #21 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?

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #22 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.

Offline max123

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Re: starting Isentress/Truvada
« Reply #23 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
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline denb45

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Re: starting Isentress/Truvada
« Reply #24 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
« Last Edit: March 07, 2010, 04:07:07 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #25 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.

Offline Structure310

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Re: starting Isentress/Truvada
« Reply #26 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. 

Offline denb45

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Re: starting Isentress/Truvada
« Reply #27 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
« Last Edit: March 09, 2010, 03:53:57 PM by denb45 »
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Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #28 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.

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #29 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.

Offline tednlou2

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Re: starting Isentress/Truvada
« Reply #30 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

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #31 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.

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Re: starting Isentress/Truvada
« Reply #32 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?
« Last Edit: March 10, 2010, 09:54:14 AM by Inchlingblue »

Offline Okealyshire

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Re: starting Isentress/Truvada
« Reply #33 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. 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.

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #34 on: March 10, 2010, 01:12:55 PM »
Wellbutrin is a name-brand version of the drug 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.

Offline Assurbanipal

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Re: starting Isentress/Truvada
« Reply #35 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
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline David_CA

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Re: starting Isentress/Truvada
« Reply #36 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!
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
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11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
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Offline madbrain

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Re: starting Isentress/Truvada
« Reply #37 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.

Offline skeebo1969

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Re: starting Isentress/Truvada
« Reply #38 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.      
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Offline madbrain

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Re: starting Isentress/Truvada
« Reply #39 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.

Offline tednlou2

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Re: starting Isentress/Truvada
« Reply #40 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.   

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #41 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.

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #42 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.

Offline tednlou2

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Re: starting Isentress/Truvada
« Reply #43 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
« Last Edit: March 15, 2010, 01:30:02 AM by tednlou2 »

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #44 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.

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #45 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?

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #46 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

Offline madbrain

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Re: starting Isentress/Truvada
« Reply #47 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.
« Last Edit: March 26, 2010, 07:17:19 PM by madbrain »

Offline Inchlingblue

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Re: starting Isentress/Truvada
« Reply #48 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.

« Last Edit: March 26, 2010, 07:51:57 PM by Inchlingblue »

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Re: starting Isentress/Truvada
« Reply #49 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.
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