POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Lucky2behere on December 03, 2010, 10:01:11 pm
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Well I was feeling pretty good about starting my treatment on Sunday til today. Wasn't thinking much about crying but I'll be off work in 15 minutes and think I'm gonna go for a walk and ball my eyes out.
Anybody use these 2 drugs together? I am super allergic to meds. Was hospitalized this year with Stevens-Johnson Syndrome, basically a severe allergy to meds. Took aspirin and broke out in a rash.
ID doc was gonna give me Atripla but chose these 2 instead. Was really thinking this was no big deal but I've read too much honesty here tonight.
I had been told that the meds were probably not much worse than a bad date I might have had but after all I've read, I'm pretty depressed.
Yea, venting is fine, but experience, strength and hope is really awesome too.
So am I gonna lose the fat in my face and grow freck'n humps on my neck and back and have fat in other weird places. I think I'm in shock. Maybe someone will say something encouraging like humps are sexy. or maybe you took the fat from your neck and had new cheeks made with it. Or maybe your dick looked bigger because your nuts were smaller. God anything positive?
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Hey Lucky. Hopefully Inchling or someone else who has been on this for awhile will chime in, but I'm on that combo and I love it! (as much as one should love a med, that is ;))
Originally, I was on Atripla and after awhile it was a nightmare (you can search for threads). I don't have any side effects at all (so far) from the T & I and I'm hoping that will be the case for a loooong time. I have read in some other posts that you have to monitor your kidney functions closely as the Truvada can be a bit harsh for some people, so hopefully your doctor has that on the agenda.
Good luck to you. I sincerely hope it's as good for you as it seems to be for me.
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Well I was feeling pretty good about starting my treatment on Sunday til today. Wasn't thinking much about crying but I'll be off work in 15 minutes and think I'm gonna go for a walk and ball my eyes out.
Anybody use these 2 drugs together? I am super allergic to meds. Was hospitalized this year with Stevens-Johnson Syndrome, basically a severe allergy to meds. Took aspirin and broke out in a rash.
ID doc was gonna give me Atripla but chose these 2 instead. Was really thinking this was no big deal but I've read too much honesty here tonight.
I had been told that the meds were probably not much worse than a bad date I might have had but after all I've read, I'm pretty depressed.
Yea, venting is fine, but experience, strength and hope is really awesome too.
So am I gonna lose the fat in my face and grow freck'n humps on my neck and back and have fat in other weird places. I think I'm in shock. Maybe someone will say something encouraging like humps are sexy. or maybe you took the fat from your neck and had new cheeks made with it. Or maybe your dick looked bigger because your nuts were smaller. God anything positive?
Lucky- I have been on these meds since March with no regrets.
Billy
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Hey Lucky, yes I am on these two meds and have been now for three years (actually the truvada much longer) and it's the easiest med regimen I've been on in 17 years. Sometimes you just gotta dive in with this and not let your mind come up with things to worry about before they happen, because 9 times out of 10 they won't happen.
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Hey buddy
I know it can be scary but the meds are amazing. I dont think you are going to have to worry about any humps or bumps, that pretty much is a thing of the past. I've been on meds over 2 years and feel great and look the same as I did pre hiv, perhaps better.
I cant comment on the Issentress but Truvada is part of my regimin. Truvada is amazing! however as EZ stated some people might have problems with their kidneys. I am potentially one of those people. But the doctos will run a kidney function test every time you do labs to watch for any irregularities. Even when they find some decreased kidney fucntion they will watch you for another few months (as in my case)to see if there is a need to switch. Not really a big issue because they can catch it early and switch you out if need be. With that being said I think I am one of only a few people here who seem to have potential problems with Truvada, and I doubt you will have any problems. Look at Missp P she's been on Truvada for years and looks great in leather :)
So good luck and let us know how it goes!
-WIll
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Hey Lucky..
I know I will get trounced on for saying the following but you're more important and I know where you're at. I think most of us felt as you are now. I am bidding adios here soon anyways...
I started on a Sunday night and had a friend stay with me the first night I took Atripla because of the hoopla. When I say it is no big deal I am really referring to the next day after taking your meds or at least in a few days you will see that all the worry was just that. ("no big deal" the most quotable line on this site right now) It will be ok. Have a buddy stay with you if you can. Incase you walk out the door naked. Just kidding. That's what I was afraid might happen to me. I wouldn't want to shock my neighbors.
El Zorro will attest to my nervousness. He was very helpful. As was David_C who has been on it for four years. A month on Atripla and I'm drinking my beers again. Not washing it down with beers and certainly limiting them but enjoying them!!!
Secondly, (here come the fire works) you is, and I say again, you is not gonna get a hump neck or lipo period. I'll take the heat and stand by that. How do I know you may ask? Cause I live here in NYC and know lots of folks who who are HIV + and on meds and look great. And because my doc, who is one of the most experienced docs on HIV than most people have here tells me so. And we talk a lot. And I am an insatiable reader and have scoured the internet.
It is a new day. I am a vain guy. Very vain and good looking. I would rather die then have anything happen to my face. HAHA. Lipo will not be an issue for you. Hell, I am more concerned about all the freakin' beer I drink. Ya know I'm 45 and in great shape but it is just starting to show. The beers.
I hope this cools ya down a bit. It's all mental stigma my friend. A powerful thing it is. Another upbeat message ya, but the truth as well. Happy trails...
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Let me start by telling you that 6 months ago, I was exactly where you are; I had just received my prescription for Atripla, and while I was relieved to feel like I was doing something good for myself, I was terrified at exactly what I would be doing TO myself by starting treatment, knowing full well it would be for the rest of my life. Six months later, I don't have any humps or lipo issues, in fact, I am doing quite well. Just recently switched from Atripla to Truvada (2 of the 3 meds in Atripla) and Kaletra and have been feeling great, undetectable after just 6 months of treatment from a VL of 44,000! Amazing!
In light of Wednesday of this past week being World AIDS Day, I guess what I am trying to say is look at the big picture and the advances and improvements in medicine, at how far we have come. As unfortunate as it is that we find ourseslves in this situation, know that there are options for you. And not only that, just the fact that you have options if this regimen is not a fit is incredible. It is an adjustment to add taking meds to your daily routine, but soon it will be just that, routine, so welcome it.
I wish you strength and peace of mind as you embark on this new chapter of your life and look forward to future posts as you complete this and many more chapters to come!
Namaste
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You all have made me feel alot better. I read too much stuff today and think I'm going to try to keep this light for a while. I didn't really cry until I read your words of encouragement. I appreciate the kind words. It's just what I needed to hear. I work with the public and it is important to look good(at least not look sick). So a few others have told me the same as you guys and dolls... to not worry and it is going to be ok. And there are options if I have problems. Love to you all! :)
El Zorro BillyB Willywump Miss Philicia Run4urlife NYCHope1
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Love right back at ya! ;)
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I started Isentress/Truvada in July 2009 with CD4s around 360 and VL about 12K. I'm doing great, became undetectable very fast and last time checked my CD4s were about 880.
As far as HIV meds go this is an excellent combo, very few if any side effects. Others have mentioned the possibility of kidney trouble with the Viread portion of Truvada. This usually happens with people who already have kidney issues to begin with.
There hasn't been any change in my appearance. I believe that untreated HIV can also affect one's appearance. The meds continue to get better as the years go by.
There have been recent studies looking at Isentress/Reyataz as a combo. So far there's not enough data to support using it but if it turns out that the data look good I'd consider switching since it would be fewer drugs to take (two instead of three different meds) and Reyataz might potentially pose fewer issues than Truvada. In the meantime though Isentress/Truvada is pretty damn good.
Remember Isentress is twice a day. I've gotten used to that dosage and it's no big deal. Make sure you are adherent, especially at first while still not being undetectable.
If you use private insurance and have co-pays there are programs that cover the co-pays every month.
LINK:
http://forums.poz.com/index.php?topic=35582.0
Assuming your numbers are still good, you might want to fill the Rx and hold off for a few weeks before starting so you can build up a supply of extra meds. Since these meds have to be taken every day once you start, it's good to have extra just in case. I have about a 3 months supply.
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Lucky
First, as others said, the drugs you've chosen don't appear to be a big risk for fat redistribution.
Second, there are some risks with your durgs. But they are only risks -- some people have problems; most do not.
But, as a suggestion, why not take the fear you have of the drugs and use it to help you be a better patient? In other words, research what is known about the risks and then use that to have a discussion with your doctor. You could ask him:
- How will we monitor the risks?
- What should I (you) do differently to prevent/monitor risks that develop?
To help the research, I think most of us would say that the biggest risks of Truvada are to the kidneys and the bones; of Isentress the largest but relatively rare risks are to muscle, liver and kidneys. So the discussion with the doctor might want to ask how he will monitor your health specifically in those areas.
And finally, even if problems do arise, dealing with them is not always as bad in practice as in prospect.
I had problems with both Truvada and Isentress (at separate times). So... I switched.
And the problems largely went away.
(The exception was bone health -- and I'm working on that.)
Be well
Assurbanipal
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What do you mean muscle problems on issentress?
I hadn't heard that
Thanks!
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I want to thank everyone who has given our buddy these words of encouragement. Some times finding out you have HIV, then starting meds and hearing that the meds might have side effects can be too much of a slap in the face to process at one time. The support you have given Lucky is very much appreciated. He is a swell guy and deserves it. My internet was down and it was stressing me out that I couldn't be there for him when he needed it. Thanks everybody! :)
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What do you mean muscle problems on issentress?
I hadn't heard that
Thanks!
Some people have gotten elevated CPK results on labs. CPK is an enzyme in the muscles -- but when we say "some" people have had this, really it's an exceedingly small amount. I'd say so small as not to even be worth mentioning in the context of making a treatment decision.
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Started my meds today. I listened to what a few people have said and saved a few extra days in case I have problems getting more meds in January. I greatly appreciate all the encouragement. I notice about 10 to 15 people are here on this forum posting regularly and I really appreciate all of you being around, especially for us who don't have any other place to go to and get info or even talk. So Thanks for keeping this forum going. I had to stay away from reading the forums for a few days just because all the information is overwhelming.
I'm feeling pretty good about starting today. I don't know if I feel different or what I feel really. But I've started. And here is to being healthy and making an attempt to kick a bug's butt. Cheers! :)
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Lucky,
I started nearly 60 days ago and it's been a remarkably good run. This is my first regimen.
Inchling was very helpful/supportive as was JK. Comments from Miss P and others helped, too.
Em
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I AM doing great. no side effects.. good luck my friend. don't be scared.. we will be here holding yur hand in spirit. positive energy
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I was amazed at how quickly Isentress made my viral load drop and my CD4 count went up. And so far, two plus years in, no side effect other than the occasional gut stuff that, when I think of it, I keep at bay with fiber.
I do get a headache sometimes from the Isentress, but that's usually when I take it without enough on my stomach. I hear that is different for different people. I am also on Prezista and Norvir, which could account for some of the stuff (or could react with the other drugs sometimes).
But yeah, that is a pretty great combo, in my opinion!
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Started my meds today. I listened to what a few people have said and saved a few extra days in case I have problems getting more meds in January. I greatly appreciate all the encouragement. I notice about 10 to 15 people are here on this forum posting regularly and I really appreciate all of you being around, especially for us who don't have any other place to go to and get info or even talk. So Thanks for keeping this forum going. I had to stay away from reading the forums for a few days just because all the information is overwhelming.
I'm feeling pretty good about starting today. I don't know if I feel different or what I feel really. But I've started. And here is to being healthy and making an attempt to kick a bug's butt. Cheers! :)
Cheers to you too Buddy. will be talkin to you. I hope this turns out to be your Lucky day with lots more down the road! :)
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Started yesterday. Felt kinda tired, so went back to sleep for about 3 hours. My head just felt kinda fuzzy. Maybe the meds were killing bugs in my brain. lol Hope so. :D
Today I feel great! I actually am feeling better already and maybe even look a little better. lol I'm dreaming. lol I have a good feeling about being ok with these meds.
Thanks everybody. I'm holding ya'lls hands in spirit too. ;D
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Been taking Truvada and Issentris for about a week now. Seems longer. No weird side effects. I've had some sharp pains in my kidneys a few times the first few days but that has stopped. Felt really sleepy/tired the first day, numbness on the left side of my brain, then that stopped also. My brain is feeling better overall. It was feeling pretty weird before I started. Overall, I think I'm feeling better. I seem to have more energy and not taking naps. I may have more of an appetite, and well, if hard-ons is a sign of being healthy, thank God for morning wood. ;D I think my sex drive is back. lol I like that side effect. hehe
Thanks for all the encouragement. Aside from having to stay on the meds for life, just taking them so far hasn't caused a big change in my life or made me feel bad like I had expected. No allergic reactions. Cheers to Wood for Christmas. :o
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Been taking Truvada and Issentris for about a week now. Seems longer. No weird side effects. I've had some sharp pains in my kidneys a few times the first few days but that has stopped. Felt really sleepy/tired the first day, numbness on the left side of my brain, then that stopped also. My brain is feeling better overall. It was feeling pretty weird before I started. Overall, I think I'm feeling better. I seem to have more energy and not taking naps. I may have more of an appetite, and well, if hard-ons is a sign of being healthy, thank God for morning wood. ;D I think my sex drive is back. lol I like that side effect. hehe
Thanks for all the encouragement. Aside from having to stay on the meds for life, just taking them so far hasn't caused a big change in my life or made me feel bad like I had expected. No allergic reactions. Cheers to Wood for Christmas. :o
Luck- I am glad you are doing well. I too sometimes have sharp pains but it is gas. Truvada can cause this so try eating foods that don't cause gas.
Billy
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just taking them so far hasn't caused a big change in my life or made me feel bad like I had expected.
That's the spirit !
Cheers!
Eric
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I've been on Issentress and Truvada for about 7 weeks now. I had my first labs done 28 days after starting. I wasn't expecting a huge change but my viral load dropped to 60 but my cd4 also dropped to 380 from 560. The ID nurse said it's common for cd4s to take a dive but it could also mean my cd4s had already dropped before starting the meds. It would make sense because I felt like shit.
I'm happy to say my brain is working better and overall I'm feeling great. I'm learning to find balance between exercise, food, work, play and sleep.
My first meds came from the ID docs office. Tomorrow will be the first time I go into a pharmacy and buy my meds. The people working there know me as a customer but not as a person with HIV. I'm not gonna hide it and go some place out of town. I'm just gonna walk in and hand them my prescription. I doubt they even look at me funny. I can deal with it if they do. I'm just really grateful to be getting meds. Thanks ya'll
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My first meds came from the ID docs office. Tomorrow will be the first time I go into a pharmacy and buy my meds. The people working there know me as a customer but not as a person with HIV. I'm not gonna hide it and go some place out of town. I'm just gonna walk in and hand them my prescription. I doubt they even look at me funny. I can deal with it if they do. I'm just really grateful to be getting meds. Thanks ya'll
If you have insurance and have a co-pay remember to use the co-pay assistance programs, it's really worth it. The Truvada one covers up to $200/month and Isentress covers $400/month.
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I've been on Issentress and Truvada for about 7 weeks now. I had my first labs done 28 days after starting. I wasn't expecting a huge change but my viral load dropped to 60 but my cd4 also dropped to 380 from 560. The ID nurse said it's common for cd4s to take a dive but it could also mean my cd4s had already dropped before starting the meds. It would make sense because I felt like shit.
I'm happy to say my brain is working better and overall I'm feeling great. I'm learning to find balance between exercise, food, work, play and sleep.
My first meds came from the ID docs office. Tomorrow will be the first time I go into a pharmacy and buy my meds. The people working there know me as a customer but not as a person with HIV. I'm not gonna hide it and go some place out of town. I'm just gonna walk in and hand them my prescription. I doubt they even look at me funny. I can deal with it if they do. I'm just really grateful to be getting meds. Thanks ya'll
Lucky- I am glad to hear that all is well.
Billy
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Congrats on your VL drop! Is there a pharmacy in your area that specializes in HIV? I was hesitant in going to an HIV pharmacy at first. Had my first pescription filled at walgreens. When I went to get the refill they didnt have any Atipla "in stock"
I drove to the HIV pharmacy and the guy there told me it was very common for the drug store phamacy's to be out of stock. The HIV pharmacy set me up. They now mail my perscriptions to me each month and they fill them the day that my insuarnce approves the refill instead of waiting for a full month so you build up an extra supply of pills over time. And, they were nice!
If you have one in your area i'd highly reccomend.
http://www.momspharmacy.com/
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No one acted odd or indifferent at the pharmacy but they did say that Issentress would take 24 hours to get and the Truvada they have. As it worked out I'll also be receiving my meds in the mail, which I already have already gotten and yes, hopefully, I'll be able to build up a little stash of meds, right now I have a week extra. That is alot better than running out or stressing out that I might run out. ::)
Thanks to the few who have offered me a few days extra to get me threw but glad I didn't have to take you up on the offer. It was very generous of you to offer. It is kinda scary now that I have started the meds to think that I'm dependent on them to live, but they are working well and I am feeling almost normal again. What's scary is the cost if I had to pay for them out of pocket: $1000 or more. Who can pay that every month?
Thanks again for the kind feedback.
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I hope some of the Isentress/Truvada club will read this rather than starting a new thread.
Have any of you dealt with incredible fatigue or exhaustion? I've been going through something. Had a thyroid test--negative. And got a draw today for CBC and liver enzyme. It's a major disruption. Wake up and in an hour want to go back to sleep. Take morning meds and within 1.5 hours can hardly keep my head up.
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I hope some of the Isentress/Truvada club will read this rather than starting a new thread.
Have any of you dealt with incredible fatigue or exhaustion? I've been going through something. Had a thyroid test--negative. And got a draw today for CBC and liver enzyme. It's a major disruption. Wake up and in an hour want to go back to sleep. Take morning meds and within 1.5 hours can hardly keep my head up.
I've had fatigue on and off but it was happening before I started meds and after starting meds it continued to happen but less so. This led me to believe it was HIV itself.
My thyroid has at times been low (which reads as high on TSH) but sometimes it's in the normal range so I don't think it's thyroid-related. My testosterone is normal (was low before starting meds).
The other day I slept a good solid 9 hours and I still could have easily taken an hour nap during the day. My eyes were heavy and just wanting to close. It feels great to be so sleepy if one is able to actually sleep.
As I said, though, this was happening before starting meds and happens less so after starting meds so I hesitate to say it's the meds (Isentress/Truvada).
When I force myself to be active it gets better. I try to go to the gym and have a god workout at least once a week, usually on Sundays, and when I do I have lots of energy after the workout.
It's hard to pinpoint a cause for this on-again, off-again fatigue.
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Thanks, Inch. It's been more on than off. I can only hope the blood workup reveals something fixable.