POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: wolfter on November 20, 2013, 06:45:28 pm
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I spent quite a bit of time with my doctor this morning. Thankfully, he noticed my marked mental decline today as a result of not sleeping last night. We went over my resistance panel which looked beyond my comprehension.
So it turns out I can't take the new drug (can't even recall it now). He suggested the following med changes; eliminate the Isentress and replacing it with Prezista and Norvir. Continue the Truvada and Intelence. I really don't care about the number of pills.
I'm a little nervous about eliminating a integrase inhibitor and returning to a PI.
My previous experiences with them have been horrid. I've been on Crixivan, Kaletra and Viracept. I didn't tolerate them well.
Wouldn't that lead one to believe that entire class of drugs might cause the same problems? My doctor says I might tolerate it better than the previous ones. I can't believe I'm about to make such a newbie comment; but I see so many others commenting this combo. Has anyone switched to this and had good results?
I'm going to attempt the change and give it a while to see if the sleep issues resolve. I NEVER had sleep issues until this latest combo. My sleep patterns were the exact same since as long as I can remember.
Some of questions answered; It looks like I'll pretty much be on Boniva forever. Some people actually have additional bone loss for a while before it starts restoring it. He admits that there's not a lot of studies in this regards.
And finally, the weirdest conversation was about testosterone. I've never had one done and he ordered it with my next labs. After talking about sexual arousal abilities and such, he says I might actually have too much which can also cause insomnia. There is also a link between osteopenia and excessive testosterone. He was asking questions like how quickly I get aroused and such. I smiled as I told him I was getting aroused just by the conversation. Hell, if I currently had a partner, we'd still be doing the deed everyday! :o
OH, and I got the dreaded flu shot, hope I don't get sick. ;)
Wolfie
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Prezista is a much, much kinder PI than the old ones, so worth a go. It has half the Norvir of Kaletra, and this may make all the difference.
I dunno why your doc still recommends tenfovir given your bone problems, 1 nuke with a boosted PI and an NNRTI is enough.
Do check out the new integrase inhibitor dolutegravir (Tivicay), expensive but good. << or is this the one you can't take?
- matt
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Prezista is a much, much kinder PI than the old ones, so worth a go. It has half the Norvir of Kaletra, and this may make all the difference.
I dunno why your doc still recommends tenfovir given your bone problems, 1 nuke with a boosted PI and an NNRTI is enough.
Do check out the new integrase inhibitor dolutegravir (Tivicay), expensive but good. << or is this the one you can't take?
- matt
Thanks Matt,
Yes, that's the one we were originally going to switch to. I was spaced out a little bit but he indicated there's an interaction. Should have asked more but he said it was out of the question for me.
I agreed to try this new combo for a month to see if the sleep issues improve. If they do and I have no horrid side affects, then all will be good. If not, I'll return to the Isentress and demand a narcotic to sleep. At this point, I really don't care as long as I can start sleeping.
I'm truly convinced that is why number of incidences have increased; due to extreme fatigue.
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Interested about the interaction...
Good luck
- matt
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Wolftie, don't hesitate going on Prezista. It's not useful to think of it in terms of those earlier protease inhibitors, most of which I was on as well: saquinavir, fortavase, kaletra, norvir
Prezista was formulated for the purpose of those people who had cross-resistance to all of the early protease inhibitors, so think of it as a PI 2.0, a second generation PI. I have been on it now for seven years with no side effects. I also have plenty of LTS friends that went on it when it first became FDA approved in 2006 and have had similar experiences as I have. It's a very good drug.
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I have no side effects from Prezista/Norvir. I've always had sleeping problems long before HIV.
My testosterone is in the 800's, so he may have something there with the sleep issue, who knows. I always thought I was low, but turns out I have enough for a couple of men, go figure. My energy kinda sucks, but I think of a few reasons that are causing that excluding meds.
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Greg,
I really hope this new combo works out for you! I know how sleep deprived you've been.
m. :)
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I tracked the package and I should receive these new meds today. I'm gonna hold off til Monday in case I have any immediate short term affects. I'm working quite a few hours over the next few days and think it's wise to wait. Come Monday, I can afford to stay close to the toilet for several days if need be. ;D
I sent my doc an email to question the interaction that his nurse referenced. The one interaction I researched is that there's a known interaction between Trivicay and calcium. I certainly hope the decision wasn't made on that alone. I could possibly eliminate the calcium now that I'm on Boniva. We'll see.
If problem continue, I will insist on a narcotic to sleep. I've always been hesitant to take anything along these lines. I only took pain meds when absolutely necessary even with my f'd up leg. I mixed a muscle relaxer with Trazadone last night and had a wonderful night's sleep. Almost 9 hours straight!!!!!
Thanks All!
Greg
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Interested about the interaction...
Good luck
- matt
I rec'd an email from my doc after asking for a clarification. Here is part of his response;
The interaction is with the tivicay and intelence. They change each other's metabolism in a way that lowers their levels below what is needed.
Glad he stays on top of all of this as it's so overwhelming.
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Yes, true, but with boosted Prezista this is not an issue (which begs the question why Intelence, or indeed why not just Tivicay)?
Good luck whatever you decide, Intelence has a pretty good reputation sleep wise, and Prezista is so not, eg, Crixivan, or even Kaletra. I hope it's okay for you. A good night's sleep is important.
- matt
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You'd think I'd be more versed in all this after so long, but it is indeed overwhelming. I know with my extensive resistance issues, I was on the current 3 med regimen since I need components of each.
Thanks for your knowledge and assistance.
Greg
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I sent an email but haven't rec'd an answer yet. I waited until today to start the new combo in case I had any temporary issues.
The major benefit so far is that the Prezista, Norvir and Truvada are once per day. I'm questioning if the dosage with the Intelence has changed. Does it still need to be taken twice per day? It'd be awesome if I finally reached a once a day dosing. ;)
Even twice per day is still better than the every 4 hours BS so many of us endured.
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The official recommendation is that you should take Intelence twice a day (http://www.aidsmeds.com/archive/intelence_1618.shtml) with a meal.
However, my bf takes it once a day, with a meal. He's on it and Truvada after a switch from Sustiva and Truvada (not Atripla, as he was on only 200mgs of Sustiva). He's been UD for years and our doctor said it was ok for him to take Intelence once a day. He's been on Intelence for about a year and he's still UD.
I tease him about taking his daily dose of Intelligence. ;D
He also switched due to sleep issues and he sleeps much better now.
You should ask your doctor if you're also a candidate to take it once a day.
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I take my Intelligence once day ;) . The key from what I hear if you are going to take it once a day be undetectable first . It could be an urban std clinic myth but that is what they told me .
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The key from what I hear if you are going to take it once a day be undetectable first .
That was the impression I got from our doctor - that and making sure you take it with a meal. He takes his with lunch, as he never eats breakfast, sometimes misses supper, but always has a good lunch.
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He finally responded indicating that I will still continue dosing twice per day. I've been finding some research that U/D it is possible to switch to once daily. After becoming u/d, I've skipped the evening dose on occasion without issue.
I am not recommending this for others since I know that some of the meds should be taken with a light meal, but I have never taken my morning meds with anything but coffee and Marlboros. I could possibly switch to lunch time, but I'm a creature of habit and it's easy to take them upon making my first pot of coffee each morning.
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;D ;D
I take my Intelligence once day ;) . The key from what I hear if you are going to take it once a day be undetectable first . It could be an urban std clinic myth but that is what they told me .
I skip this dosage quite often as my aidsy brain fades deeper into the abyss.
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Just curious about something; my last dose of Isentress was Sunday morning. I have done nothing but sleep and be on here occasionally. Could eliminating that drug already be contributing to finally sleeping so quickly? Or a coincidence?
I'm hoping the side affects of this new combo is temporary. Let's just say I've hit the toilet many, many times. Kinda like the 90's reincarnated. Hopefully it's just a matter of get accustomed to it.
Thanks all.
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I have found that med side effects abate really quickly most of the time . I got dramatic results almost overnight ditching Atripla for Intelence / Truvada .
Are you on norvir ? Its a poop and gassy drug for many until you adjust . I personally never adjusted well to norvir but most do well to OK on it in time .
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I'd give your body a couple/few weeks to adjust to your new meds. As far as the Isentress... I agree with Jeff on how quickly things can change. You have had horrible sleep issues on this med (worse than me only because I could counteract it with Trazodone).
I hope you will be getting into a regular sleep pattern but your work hours concern me (not being regular).
Wish you the best Greg! :)
Oh... and hope the bathroom trips will come with less frequency in the coming weeks too! :)
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I have found that med side effects abate really quickly most of the time . I got dramatic results almost overnight ditching Atripla for Intelence / Truvada .
Are you on norvir ? Its a poop and gassy drug for many until you adjust . I personally never adjusted well to norvir but most do well to OK on it in time .
:) It was strange as I was plagued with gas all day yesterday which I seldom have. I haven't trusted a fart for at least 20 years and got tired of sitting on the toilet constantly. Wouldn't you know, the one time I decided to trust it was just a fart....well, it was and I had a mess. OH, such memories. Glad I held off til I didn't have to work for a couple of days.
Yes, I started Norvir
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I'd give your body a couple/few weeks to adjust to your new meds. As far as the Isentress... I agree with Jeff on how quickly things can change. You have had horrible sleep issues on this med (worse than me only because I could counteract it with Trazodone).
I hope you will be getting into a regular sleep pattern but your work hours concern me (not being regular).
Wish you the best Greg! :)
Oh... and hope the bathroom trips will come with less frequency in the coming weeks too! :)
I'm giving it at least a month to see if the changes will lessen. Just happy to be sleeping.
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I'm giving it at least a month to see if the changes will lessen. Just happy to be sleeping.
:)
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Goodness, now I think I'm going to need something to keep me awake. ;D I think I've been so sleep deprived that it dictates that I finally sleep as much as possible.
Also, in just a few days, my brain fade and cognition have improved quite a bit. Hoping this is finally the magic bullet that will finally lead to a good quality of life. The one side affect is gradually lessening.
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Im so glad that you are getting more sleep, sounds like you made a good med choice.
britchickx
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I've tried googling with not much. Can anyone recall if there has been any studies of different HIV drugs intensifying hyperactivity?
The reason I'm asking, is because of the recent med change. Since eliminating Isentress, I've noticed incredible beneficial changes. The first few days, I felt totally worn out and slept a lot. Again, I think that was a matter of sleep deprivation catching up. The last couple of days have been awesome.
My mind is clear, my brain isn't going 1000mph and I've calmed down to the point where several people have asked me if I'm OK. I think they're witnessed my hyperactivity so much recently, that being normal seems odd.
The bathroom issues have totally gone away so I'm totally loving this new combo. 4 different meds instead of 3, but who cares. ;)
Greg
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That's great news Greg!
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Great news Greg .
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I'm kinda annoyed at myself for not heeding my own constant advice. I've suffered longer than necessary by not being more assertive with my doctor. When the fatigue got so bad that functioning was difficult, I should have insisted instead of questioned changing meds.
My cognition has improved tremendously and I've acquired many of benefits. mood changes have decreased, irritability is gone and I'm simply a lot more mellow.
I guess I was so deadly sick when starting this combo, that I didn't recognize what was caused by the OI, and what was medication related.
I actually like the new improved Wolfie!.. ;D Still sleeping more than usual, but won't complain about that for a while.
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That's is great news Wolfe, I felt the same when I swapped out my combo last year . Sometimes you don't know what you got until its gone but in this case its a good thing . I was so used to feeling crappy it was shocking how much better I felt after th switch .
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I'm a little bit behind in this thread, but when I swapped to Complera from the Atripla my poor sleep habits and irritability went away almost over night. Glad to see the change in combination helped your quality of life
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thanks guys. I've learned several lessons through all of this. Firstly, I'll continue to insist on change if I witness abnormalities. I'll also make sure health care professionals totally understand my issues instead of them minimizing them.
When I first started addressing these issues with my doctor, I was too passive which didn't relay the true problems. I'm sure my doctor was impressed with my progress and numbers over the last few years, that my minimizing the issues didn't sink in.
I'm still interested in hearing from others if they had any increased hyperactivity on different combos. I've always been a bit hyper, but the last couple of years where on overdrive. I can actually sit and watch an entire hour episode without the need to do 20 other things at the same time. I can't even lay down for a rest now lest I fall asleep. Such a nice problem to finally have. :)
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And finally, the weirdest conversation was about testosterone. I've never had one done and he ordered it with my next labs. After talking about sexual arousal abilities and such, he says I might actually have too much which can also cause insomnia. There is also a link between osteopenia and excessive testosterone. He was asking questions like how quickly I get aroused and such. I smiled as I told him I was getting aroused just by the conversation. Hell, if I currently had a partner, we'd still be doing the deed everyday! :o
My testosterone is in the 800's, so he may have something there with the sleep issue, who knows. I always thought I was low, but turns out I have enough for a couple of men, go figure.
Show offs. How does one go about getting a testosterone booster? I think my doctor thinks I just want steroids, which ain't the case.
I've tried googling with not much. Can anyone recall if there has been any studies of different HIV drugs intensifying hyperactivity?
I find Stribild very energizing, though it's has calmed down over this past year. I didn't sleep much in the beginning, because I just had too much restless energy.
Integrase inhibitors in general have shown a small link with insomnia. AIDSMeds had this (http://www.aidsmeds.com/articles/hiv_isentress_cns_1667_23042.shtml) to say last year about raltegravir in particular:
"Approximately one in ten people using the drug reported experiencing at least one CNS-related problem, such as headache, depression, anxiety, dizziness, insomnia or altered dreams. These problems were most common among those combining Isentress with tenofovir (found in Viread and Truvada) or those also using a proton pump inhibitor (e.g., Prilosec, Prevacid, Nexium or Protonix). As tenofovir and proton pump inhibitors can increase blood levels of Isentress, which possibly explains the higher rates of CNS-related problems in the study, the researchers suggest that people living with HIV using these combinations be monitored carefully."
http://www.aidsmeds.com/articles/hiv_isentress_cns_1667_23042.shtml
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Oks, I never actually had my levels checked and since the insomnia has disappeared, there's no need to test it at this time. I might still have excessive amounts because some days, it's like highschool all over again. Just boink, and he salutes to full attention. ;D
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Hey Mr. May I ask why you switched from Atripla? I've been on it for approx 7 years, and noticed GFR trending down, as well as feeling a bit puffy around my eyes and some flank pain (even though Docs said it as gym related...go figure.) I'm now on Tivicay and Epzicom for about a week. I have to say, my flank pain seems to have increased, as well as lower back pain, coupled with nausea and a bit of a fever. Hoping its not kidney damage, etc.
warmth
raff