Author Topic: Question for those taking Isentress/Truvada (Read 12004 times)

Inchlingblue · « **on:** June 16, 2009, 07:47:53 pm »

Well, I finally got the nerve to go and fill my Rx for Isentress/Truvada! Even though I will start soon I realized after actually getting the meds that, since I don't absolutely have to start right now (my numbers are not bad), I will put it off another 3 weeks so that I can build up a supply of meds in case I have insurance problems in the future.

Since the dose is twice a day for Issentress and once a day for Truvada, I was going to do the Truvada dose in the morning but the pharmacist recommended to do the Truvada at night b/c he said it might cause drowsiness.

I had never heard this about Truvada and if it's true it seems kind of perfect. Not that I usually have trouble sleeping but sometimes I do so that would work out great if Truvada made me drowsy at night.

My questions are: 1) Has anyone else experienced drowsiness with Truvada? 2)Is there a recommended time I should take it, i.e. should it be right before bedtime maybe?

Thanks

Miss Philicia · « **Reply #1 on:** June 16, 2009, 08:58:59 pm »

I take Truvada in the morning and it doesn't make me drowsy. The label says "dizziness" not "drowsiness" though I've never felt dizzy either. Insomnia is listed as a side effect, which is why I err on doing taking it in the morning. I've been on this medication for five years.

Inchlingblue · « **Reply #2 on:** June 16, 2009, 10:53:36 pm »

I thought it was weird that the pharmacist said that. Frankly I think he's full of SH**, he was nice enough but the more and more contact I have with "health care professionals" since being diagnosed, the less and less impressed I am with them.

I suppose it could happen, the drowsiness, but for him to mention it so specifically you'd think it was a common side effect. He also said it might cause a rash on my hands@!? Whatever.

Miss Philicia · « **Reply #3 on:** June 16, 2009, 11:14:14 pm »

Truvada makes you fart. Seriously. But I've found it rather minimal. Every once in a while I have some nausea, but that's also quite minimal.

This combo is as easy as pie. I'd just dive in and not think about it much.

AndyArrow · « **Reply #4 on:** June 17, 2009, 12:30:57 am »

I also take my Truvada in the morning and have no troubles.

Isentress -- at least for me-- is a very side effect free drug.

A little stock pile is always a good idea ... just remember to always use the oldest drugs first

markaj · « **Reply #5 on:** June 17, 2009, 03:06:54 am »

I take my Truvada with the evening Isentress, always with my dinner. I find this decreases the flatulence side effects. The only other side effect I think I've had with Truvada was when I took the first ever dose I was sick. This is pretty much the best combo there is with minimal side effects.

Assurbanipal · « **Reply #6 on:** June 17, 2009, 07:07:22 am »

I put most of the pill taking during the part of the day when my schedule is the most regular, so that adherence is easier and closer to 100%. So I take Truvada and other once a day meds in the morning. If this is your first combo you might want to consider your schedule too.

Don't know if the dizziness is a big deal, I fell down a lot the first few months, but attributed it to muscle loss at the time (not from the Truvada, but from the hospitalizations that preceded it). Doni't notice any now.

Haven't noticed drowsiness.

Oh ... some people fart ... me, I burp a lot more.

Do ask your doctor about how you will monitor bone health.

Not on the Isentress part

Good luck
A

aztecan · « **Reply #7 on:** June 17, 2009, 10:50:31 am »

I've been on this combo for about a month now.

No problems. If it causes more gas, I haven't noticed.

No side effects at all, aside from a slight headache when I first started taking them. Even that could have been the people I was dealing with at the time rather than the meds.

I think you will find it rather easy to take.

HUGS,

Mark

Inchlingblue · « **Reply #8 on:** June 17, 2009, 12:01:21 pm »

I had never hard about the gas, even though I hope I don't get it, I guess it's a small price to pay compared to other things.

Thanks for all the good advice!

PS: I can't even bring myself to type the word f*rt, how prudish LOL

Miss Philicia · « **Reply #9 on:** June 17, 2009, 12:15:24 pm »

It's the viread component which gives one flatulence. For some odd reason the side effects for Truvada listed on the aidsmeds link does not list this as a side effect, whereas the link for viread does. It's not a big deal. I don't go around faring continually or anything, but I do notice the kind of bloated gassy feeling at times. I take a daily amount of pancreatic enzyme (Pancrecarb) to address the issue, but my GI issues pre-date my use of viread/truvada. If I include my overall viread use and lump it in with the time I've been on truvada, then that's eight years -- I've been on this medication longer than any other HIV med. I'd not really thought of that.

But whatever, I'd say that the long term concerns about bone density issues are a larger concern with this medication, and I take a daily calcium/vitamin D tablet as a precaution.

Inchlingblue · « **Reply #10 on:** June 17, 2009, 12:19:19 pm »

Miss P: "farting continually" that's funny, as a phrase, lol. It's a good thing you don't go around "farting continually." I can only type it b/c I'm quoting someone else. How weird. I never realized I have a "thing" about that. Are you OK bone density wise considering you've taken it for so long? Have you been checked for that?

Good advice about the bone density thing. I already am taking D/Calcium, not every day but like every other day, but I was just doing that because of the HIV itself, didn't realize this could make it worse. There's also I guess possible kidney issues with Truvada and a small number of people on Isentress get elevated CPK levels, an indication of muscle damage.

If one starts to think about all this, no wonder it's scary to take this. But of course, as we all know, the alternatives are way worse so............

Miss Philicia · « **Reply #11 on:** June 17, 2009, 12:37:51 pm »

Err... I'm a bit more cavalier I guess about the bone density, as I've not insisted on getting a scan done like other folks, plus I'm on Medicare and I'm not sure it would be fully covered if it's just a "oh I'm curious" type of thing. However, I can frighten you and state that I've broken toes twice during that time, or rather two hairline fractures, but it was just from being clumsy and bumping into furniture. Once I went to a podiatrist and got an x-ray, and both times it just healed on its own. The x-ray instance pre-dates the recent recommendation to take Vitamin D/calcium (I've taken it for 2 years) so I guess that was my shot to request a bone density scan.

I guess I don't particularly want to know, because Viread/Truvada is the only NRTI class med that I am not resistant to.

Inchlingblue · « **Reply #12 on:** June 17, 2009, 12:50:29 pm »

If they healed so well that's definitely a good sign that your bones are in at least decent shape. And the D/Calcium of course strengthens them further. So it sounds fine

As a related aside, maybe you know this already but: resistance training (i.e. free weights or machines with weights) helps to strengthen bones. I read in another of your posts something about wanting to start at home etc., which is great. You really don't have to overdo it either, just a small amount helps. I personally can't do that at home, I do need to be "in a gym" to be able to work out. But whatever works. You should try to do at least some resistance training.

Maybe like Sally Field you can try "once monthly Boniva." I'm sort of joking, I think it's only for women, right?

Assurbanipal · « **Reply #13 on:** June 17, 2009, 12:53:07 pm »

Quote from: Inchlingblue on June 17, 2009, 12:19:19 pm

If one starts to think about all this, no wonder it's scary to take this. But of course, as we all know, the alternatives are way worse so............

The alternative is a lot worse -- remember you may get no side effects -- these are all just potential. And starting when you are still quite healthy increases the odds that you won't have any problems.

Be well

A

Miss Philicia · « **Reply #14 on:** June 17, 2009, 12:56:53 pm »

Yeah, I healed fine so I agree I think my bones are healthy, plus not sure if I mentioned in that other thread that I did a 5-day/week resistance training for over a decade until I had bad fatigue issues previous to achieving VL suppression. The VL suppression took me 13 years on HIV meds, so you can imagine how worn out I was as that went further and further along. It's amazing that I continued to schlep to the gym for as long as I did actually. I'm very schooled on the whole workout thing, and the diet thing as I was incredibly dedicated. So much so I'm sure back at the time I could have easily become a personal trainer if I'd decided to.

And, of course, any non-HIV infected person can bump into furniture a couple of times.

Inchlingblue · « **Reply #15 on:** June 17, 2009, 01:05:23 pm »

Quote from: Assurbanipal on June 17, 2009, 12:53:07 pm

The alternative is a lot worse -- remember you may get no side effects -- these are all just potential. And starting when you are still quite healthy increases the odds that you won't have any problems.

Be well
A

You're right. I won't lie to you I completely and utterly freaked the F**K out when I found out and it's taken me several months to be in a place where I'm more at peace with everything. What scares me the most at this point is not the medications themselves but accessing them. Right now I do have good insurance so it's fine, but I know it won't last forever. I'm not sure how much longer I'll be in this job etc.

It would be so amazing if the health care system is fixed at least to the extent that people with chronic illnesses who are not poor and not rich can have the potential to have the best life possible by not having to worry about lapses in coverage and having access to life saving medications (as is the case in most industrialized countries with access to good health care).

I say "not poor and not rich" because, let's face it if you are either very poor you are covered (or at least every single person I know or have come in contact with who is very poor has had no trouble receiving all sorts of free medical care) and if you are rich you're also covered but those of us in the middle can many times be screwed.

Affordable Universal Health Care NOW!

There, I'm off the soap box

Assurbanipal · « **Reply #16 on:** June 18, 2009, 07:25:09 am »

Quote from: Inchlingblue on June 17, 2009, 01:05:23 pm

You're right. I won't lie to you I completely and utterly freaked the F**K out when I found out and it's taken me several months to be in a place where I'm more at peace with everything. What scares me the most at this point is not the medications themselves but accessing them. Right now I do have good insurance so it's fine, but I know it won't last forever. I'm not sure how much longer I'll be in this job etc.

Well, it's not really forever, just until the generic date... but 2022 for Isentress is a long ways off. The Truvada 2017 date is starting to feel almost reachable somehow though.

Still there are personal strategies you can adopt in the meantime to protect yourself. I see you are waiting to start your prescription to get closer to the renewal date and build a supply. Another strategy that can be even more useful is checking to see whether your plan has a mail order drug option that will let you order a three month supply at a time. Usually it is cheaper for you (most plans charge 2 monthly copays for 3 months of drugs) and for the plan (mail order pharmacies offer big discounts). And most plans let you fill your renewal at 2 months. It's pretty easy to build up a stock to tide you over for 3-6 months if something happens. In fact, if you have a mail order plan with 3 month supply, in your shoes I would start the drugs now to see if you can tolerate them and then move promptly to mail order, which will give you a 3 month supply in hand.

I'm for health reform too -- but you should protect yourself as much as possible. At this point last time people were almost certain health reform would happen, but with one sixth of the economy directly affected there's a lot of people who may wind up lobbying hard for the status quo and you can't count on legislation.

aztecan · « **Reply #17 on:** June 18, 2009, 09:47:01 am »

Quote from: Inchlingblue on June 17, 2009, 01:05:23 pm

It would be so amazing if the health care system is fixed at least to the extent that people with chronic illnesses who are not poor and not rich can have the potential to have the best life possible by not having to worry about lapses in coverage and having access to life saving medications (as is the case in most industrialized countries with access to good health care).

I say "not poor and not rich" because, let's face it if you are either very poor you are covered (or at least every single person I know or have come in contact with who is very poor has had no trouble receiving all sorts of free medical care) and if you are rich you're also covered but those of us in the middle can many times be screwed.

Affordable Universal Health Care NOW!

There, I'm off the soap box

Trust me, I hear you.

I picked up my med refills yesterday. The copay bill came to $225.00. That's for one month's meds.

We do have mail order available, but the service sucks big time and I have to pay two month's worth of copays for three months of meds. It is hard to come up with $450 for the copays at one shot.

I have written letters to the insurance company, hoping to get the cost of Isentress reduced, but so far, no luck. I also have asked the doctor to do this for me as well.

When we talked about this situation, neither the doctor nor myself hold out much hope for the copay to be reduced.

So, I just have to grin and bear it. Luckily, I have a flex program at work, so I can use it for the copays. Unfortunately, they will only allow an employee to contribute $3,000 a year to the program. They are talking about raising that limit, I hope they do.

Even the poor, who get Medicaid, aren't sitting too pretty. I know living on disability is no picnic. I have watched how people struggle to survive and even Medicaid programs are not so secure any longer.

Seems the only people who are assured of quality, long-term health care are the wealthy.

So, to echo itchingblue, we need affordable universal health care. sooner rather than later.

HUGS,

Mark

Inchlingblue · « **Reply #18 on:** June 18, 2009, 01:06:30 pm »

Mark: Merck has a "Support" program specifically for Isentress, I added the link below. I'm not sure what the criteria are for qualifying but they claim to help out financially for those having a hard time paying for Isentress.

My insurance right now is actually really excellent. The Isentress co-pay is only $25. Which I thought was weird since other meds that retail for less money than Isentress have higher co-pays, go figure?! They don't offer the 3-month option for it but for the time being, it's perfectly fine. My concern (fear?) is losing the insurance coverage. It's hard sometimes living day to day knowing that there's this big "uncertainty" looming when it comes to coverage. That's life, I certainly don't want to complain I know others have it much worse.

poz.com had a recent article about the HIV Medicine Association (HIVMA) advocating for a private plan as part of insurance reform, I hope the powers-that-be take it to "HAART"

LINK:

http://www.poz.com/articles/hiv_healthcare_reform_761_16787.shtml

LINK TO ISENTRESS SUPPORT SITE:

http://www.isentress.com/raltegravir/isentress/consumer/support/index.jsp

Inchlingblue · « **Reply #19 on:** June 20, 2009, 07:36:48 pm »

Quote from: Assurbanipal on June 18, 2009, 07:25:09 am

Well, it's not really forever, just until the generic date... but 2022 for Isentress is a long ways off. The Truvada 2017 date is starting to feel almost reachable somehow though.

Is there somewhere online where one can look up dates when patents expire for current drugs?

Thanks

Assurbanipal · « **Reply #20 on:** June 21, 2009, 08:35:32 am »

The authoritative (and difficult to use) source is the FDA orange book http://www.accessdata.fda.gov/scripts/cder/ob/default.cfm

If you decide to get into this, its easier to figure out if you look at it in the print format though:
http://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/UCM071436.pdf (WARNING 1000+ page pdf file)

But if you just google generic and the drug name you will usually find several sources including emedtv. They have a well laid out page for most drugs with first potential generic date listed

Here is Truvada, for instance
http://aids.emedtv.com/truvada/generic-truvada.html

I checked several of the emedtv items against the orange book and they appeared to be accurate.

***edit to add print version of orange book

Inchlingblue · « **Reply #21 on:** June 21, 2009, 02:43:29 pm »

Assurbanipal: thanks for the excellent info

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Author Topic: Question for those taking Isentress/Truvada (Read 12004 times)