POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: cjc on July 26, 2006, 11:28:33 pm
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Just wanted to see if I could get some suggestions. I am on Sustiva and Truvada. i am a 34 Yo female, if that makes any difference. what i am concerned with is the fact that I have been so tired lately. I don't know if it's the meds that are making me tired or just life in general. Has anyone else on this combo experienced this and do you have any suggestions on what I can do to improve it. I eat fairly well and get at least 8 hours of sleep at night but I am still just exhausted especially lately. If anyone has any suggestions, I wold love to hear them .. Thanks, Cristy
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Fatigue is one of the most difficult things to deal with, sep. since docs don't givie it much credence often.
These pages may help:
Feeling Tired (Fatigue & Anemia) (http://www.aidsmeds.com/lessons/Fatigue1.htm) - AIDSMEDS pages
Fatigue – feeling tired (http://www.i-base.info/guides/side/fatigue.html) - i-Base pages
- matt
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SUSTIVA DOES HAVE THAT KIND OF EFFECT ON PEOPLE.I WAS ALWAYS VERY TIRED EVEN THOUGH I GOT A GOOD NIGHTS REST.I EVENTUALLY GOT OFF THE SUSTIVA AND SWITCHED TO NORVIR WITH LEXIVA.ALONG WITH TRUVADA.THIS COMBO HAS BEEN AMAZING,THE FIRST TIME IN A SPAN OF 15 YRS THAT I HAVE BEEN UNDECTABLE WITH NO SIDE EFFECTS!!!
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I was really tired the first month then it seemed to level out.
Now I just feel exhausted and fatigued.
Here's another post regarding my concerns with fatigue:
http://forums.poz.com/index.php?topic=2059.msg22325#msg22325
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Thank you for your responses. I did check out the link that were provided and also called my doctor's office and left a message. Cristy
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Hello, I have a doctor's appointment for Wed to check this out. Thanks for your suggestions and I will update after my appointment. Cristy
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Went to my doc apt. He went ahead and drew blood for my lab work and said they if my fatigue is caused by anemia or something else. I do feel a little better especially since they took my concerns seriously. He gave me some 800mg Motrin for my aches and that helps some. I'll post a update when I get my labs back. Thanks, Cristy
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HI CRISTY... Here's a past thread concerning fatigue. Response #23 (from Jena) is interesting in my opinion
CLICK HERE (http://forums.poz.com/index.php?topic=474.msg4331#msg4331)
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Hello, Thanks for putting up that link to the tired thread, allopathicolistic. I do take prenatal vitamins but maybe adding a b-12 supplement would help. I called my doctor's office today but the results for my bloodwork haven't come back yet. i am grateful my doctor took my complaints seriously instead of blowing them off., seems like several of you got that response. I will post an update after I get my bloodwork back . Thanks again, Cristy
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i was tired all the time and my Dr put me on PROVIGIL , it works great
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I am also always tired, before meds it was worse, but now it is still terrible.
I could sleep all day, and sometimes I do.
My way of managing it is to just ignore it when I can and feel like it.
Just get out of bed, take a shower and get busy doing something.
Also exercise energizes me a little.
I also would like to add that my better hours are after 6 PM.
I don't know but I just have more energy in the evening.
But in general it is a pain, I miss the energy I used to have before.
Anyway that's my take on it.
C69
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I was on sustiva/truvada for about 1.5 years and it started fine with virtually no side effects. After reaching the 1 year point on this combo, I starting becoming noticeably fatigued all the time. I also got enough sleep but it was never good sleep. I always woke up feeling like I hadn't slept a wink. I started lexapro in part because of this thinking it might just be old fashioned depression but it wasn't.
Sustiva/truvada worked great for me, but the fatigue and subsequent exhaustion peaked in June and I missed 68 hours of work that month... after that... enough was enough and I dumped sustiva for viramune and I feel much better energy wise.
the sustiva/truvada combo worked well for me but the side effects crept up on me after a year, almost too slowly to even recognize (who gets side effects that only start a year later) , but it is an all too often occurance in some to develop side effects on sustiva that never manifested themselves when the meds were begun.
I'd seriously dump it in favor of something else.
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I was going to start a thread with the same subject. Glad you did.
I'm on sustiva and epzicom 1 year now and feel tired or worn out from time to time.
I was worried the meds were not working well, but my labs are great, so I can say the meds are working, but this is the cost?
Strange, but if I force myself to do things like take long bike rides or mow my 1/2 acre lawn, I actually then feel better days afterwards. If I am working and not getting much exercise, the tired effects hit me harder.
So as long as my labs are so good, I just have to live with the sides, I guess, unless they get really bad (???). I wonder about that.
I also like reading in the "NEWS" section that it may be possible (in testing phase) that once you become undetectable one might be able to keep undetectable on fewer meds, like maybe one med/drug.
I asked my doc about this and he said it looked VERY promissing and if I was really interested I could get on a trial test on this issue. I dont think I want to go that far, myself. But if they find reducing the meds will still deliver undetectable, wow to that! But I can see, after it being one year for me, that putting up long term with the sides and effects can really get to you. I wonder what I will be like in 2-3-4 years?
But then again, I do know a few people, on meds since 1995, that just keep getting better and better (all undetectable long term on meds), and really have no tired issues.
But too, they are on disability and do not have to do the 9-5 thing working. When they are tired, they nap and dont push themselves. That seems to keep them very chipper. So I look to that as hope...
I still work, and nights to boot, long 12 hour shifts. So I have to figure that in to the tired issue.
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Hi everyone. I'm new here and have a few comments to share. These are the first hiv meds I've taken and I have been on Sustiva/Truvada for 2 weeks. What concerns me is the way it interferes with my sleep cycle and the resulting fatigue and inability to think clear headed during the day. Surface level sleep will not cut it for my body and mind. Plus... I don't like having to wake up and use the bathroom 2-3 times a night.
I personally would not be willing to stay married to Sustiva/Truvada because I felt great before starting this combo. Now, I have lost about 40% of my energy and feel drugged out and dizzy most of the time. Granted it's only been 2 weeks, but my intuition tells me that it will probably cause me lesser quality of life both mentally and physically. My intuition has never failed me so far. Maybe it's cause I am starting with 70 cd4's and also have hep. c. Who knows? I would like to say I have a friend who is doing well on this combo. Any suggestions as to another combo to consider? Thanks. Tim
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Just wanted to see if I could get some suggestions. I am on Sustiva and Truvada. i am a 34 Yo female, if that makes any difference. what i am concerned with is the fact that I have been so tired lately. I don't know if it's the meds that are making me tired or just life in general. Has anyone else on this combo experienced this and do you have any suggestions on what I can do to improve it. I eat fairly well and get at least 8 hours of sleep at night but I am still just exhausted especially lately. If anyone has any suggestions, I wold love to hear them .. Thanks, Cristy
Hey Christy-
check your private message box...i sent you something you might be interested in to solve the problem.
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I got a warning that I may not want to reply here, as there haven't been any postings in 60 days. Doesn't matter, as I just wanted to say that I can really relate to C69 about being at my best after 6pm. But, I'm pretty sure I've always been this way. Someone really should start an after hours club for Hiv/Aids people. They we could speak directly to one another as opposed to sitting alone in the dark and typing. Okay, in a sense you're not completely alone.
I guess, I'll find out how many people continue to look at this topic. C69, are you out there?
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i relooked at it, Maniso. I am now on Altripla and Still tired but feeling better. I have been trying to get up and do more stuff when I am not working. Love Ya'll Cristy
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Cristy - hope things are continuing to improve. I am on Combivir / Sustiva - been about 9 months now. I find a little bit of exercise combats that fatigued feeling in my case. Just some light cardio at the gym in the AM or after work seems to give me more energy for the rest of the week.
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There are probalby to major lines of thought to consider.
1) sustiva seems to impact ones sleep cycles.
if this persists and no other ready anser or obvious explanation such as anemia, you might want to get a sleep study done. If if fact your sleep cycle is impacted, it can cause fatigue. (I have apnea myself, an although I'm not on meds yet, my sleep cycle was so impacted that I never got much deep level 3 and 4 sleep.
2) Toxicity of Meds.
we need the meds to supress the hiv, but the meds have some toxicity associated with them. So we need to optimize our health.
Exercise and Nutrition are pretty important.
If you get a good multi like added protection without iron, which newyorkbuyersclub.org sells, that may be a good foundation in which you can build. Additionally, there are some interesting antioxidents, Alpha lopaic acid, Acetyl-l-Carnintine and NAC, which may help your system process the meds.
Its not easy to learn how to exercise if your not used to it. while we would all like to be able to run a marathon or lift wieghts for hours, I suggest that you start walking 30 mins a day. You might be amazed at the results. Of course you need enough energy to do the work, so I really happy you are going to a doctor to check your blood work. If it is treatable, great, if not, or you might need to change treatment, so you can feel better.