POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: H.E.Pennypacker on February 26, 2013, 11:44:31 am
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Hello all,
This is the first time I post here, although I've looked thoroughly through the forum in search for numerous answers.
I'm 25 years old, and I was diagnosed almost 2 years ago. For these 2 years my CD4 count has been pretty much stable at 400-500. Last October it sunk to 311, and according to my last test two weeks ago it seems to have stayed around there, with a count of 340.
According to European guidelines, the doctor strongly recommended that I started taking medication, and that's what I am going to do. I've had two whole years without taking medication and I count that as blessing.
Now here comes the question: which medication?
Before I go on, I'd like to make sure that whoever reads me knows that I am aware that I will have to make changes to accommodate the treatment. However, I have been determined, since I was diagnosed, that I will not let HIV run my live, that I will not live for it - as some people seem to. It is an aspect of my life, but it is not its defining characteristic.
That said, I intend to try to accommodate my medication to my lifestyle. After all, what is the objective of every new medication that comes out if not to make life easier and better for those who are living with HIV? Therefore, I will dispense any judgement coming from those that lived the hard days of HAART or those who do not share my approach to the disease or lifestyle.
Disclaimer over :-X
Based on my doctor's suggestions I have come to the conclusion that the combo Viramune XR+Truvada seems to be the most suited to me.
I have been looking at mainly "once a day" regimes, and I've discarded Atripla because of the intense drowsiness at night, and Complera because of the need for it to be taken with a fatty meal. I often go out or stay up late, so I would like to avoid that if I can. In the same way, I don't want to run into a situation where I may not have guaranteed access to a fatty meal - for example, when travelling.
With the PI regime Reyataz+Norvir, I am a bit weary of taking it since it may have reactions with certain recreational drugs. I did speak to my doctor about this, and he didn't seem overly concerned about taking them occasionally - especially as it's a once in a while thing.
That left me with the Viramune XR+Truvada combo. But, I'm still unsure about it as there are mixed stories on the internet. Based on what I read I would be ok to start on it as my CD4 is below 400. So now a few questions:
1) What is the experience of those who started on Viramune+Truvada? Did you receive it well, or did you have to change treatment?
2) What would be the best time of the day to take it? Does it make you drowsy or slow? I was thinking of taking it in the middle of the day - since it's a time I can more or less guarantee access to the meds in case of an emergency.
3) What is the effect on the CNS? Any weird dreams or insomnia?
4) What its effect on body fat? And the liver?
3) What other regime would you recommend starting on?
Many thanks in advance!
And sorry, it's so long!
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Viramune is effective, and not associated with drowsiness, sleep and mood disturbances in 95% of cases.
It is correct that men are recommended to start on nevirapine only with a CD4 count of 400 or under.
Viramune needs care at the beginning to check it isn't affecting you liver, this means close monitoring for the for the first 6-8 weeks and your doc should be wise to this. A lead in dose of 200mg is used for the first two weeks, and if all is well you then use the full dose.
Nevirapine is generally not associated with blood fat or body fat changes.
Hope this helps
- matt
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Hi,
Although I am not on Truvada, I am on Viramune. It was the first drug I was started on, and I am still on it, almost 10 years later. The other drug I am on is Epzicom.
I never had an issue with viramune. As Matt stated, you will start with a lead in dose, for the first 2 weeks, after that, the full dose is then taken daily.
Also as Matt stated, you will get some blood tests for about 6-8 weeks, to make sure your liver is doing OK.
When I started on Viramune in 2003, my tcell count was 16, and a percentage about 5%. I had never been on antiretrovirals prior to this. ( see my signature line)
Viramune and truvada, can be taken with or without food. I like to take mine with food, so that makes it easier.
I've had no problems with my combo consisting of Viramune. I take one viramune
(200mg) at 8:00 am, along with the Epzicom, and the other one at 8:00 pm. I work full time, 11:00 to 7:00 shift, and it doesn't effect how I perform my job! :)
Good luck! ( And Welcome)
Ray
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By the way, I've not been on the Viramune XR yet, They are still prescribing me the 200 mg dose.
I wouldn't have a problem switching to the XR.
Ray
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That was my first combo. I felt fine physically and mentally. But about 2 weeks in I got the dreaded rash. Head to toe! Discontinued it. Took about a year for the flush ness to completely disappear.
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Thanks Matt, thanks Ray - That's really useful information.
Surf18 - Did you start the medication with your CD4 below 400 or higher? How bad was the rash? It would be dreadful to have it, mainly because I'm pretty convinced on this combo.
That was my first combo. I felt fine physically and mentally. But about 2 weeks in I got the dreaded rash. Head to toe! Discontinued it. Took about a year for the flush ness to completely disappear.
thanks everyone for the help!
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I have been on Viramune and Truvada for 5 or 6 years (time flies). I switched from a combo of Sustiva and Truvada (aka Atripla) because I didn't like the CNS side-effects of Sustiva. I have had no CNS side-effects due to Viramune and Truvada (insomnia, drowsiness, increased depression), nor physical side-effects. My CD4 was about 500 when I switched to Viramune. Just about any HIV drugs (and many other medication) you take are metabolized and cleared by the liver. For the first year, my blood tests showed an elevated level of alkaline phosphatase, but it's been normal for several years now.
All told, I'm happy with Viramune and Truvada. I'm currently taking Viramune XR, but will be switching back to the original Viramune because I can get it as a generic and there it is much cheaper for me.
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Before I go on, I'd like to make sure that whoever reads me knows that I am aware that I will have to make changes to accommodate the treatment. However, I have been determined, since I was diagnosed, that I will not let HIV run my live, that I will not live for it - as some people seem to. It is an aspect of my life, but it is not its defining characteristic.
That said, I intend to try to accommodate my medication to my lifestyle. After all, what is the objective of every new medication that comes out if not to make life easier and better for those who are living with HIV? Therefore, I will dispense any judgement coming from those that lived the hard days of HAART or those who do not share my approach to the disease or lifestyle.
Disclaimer over :-X
Here is my disclaimer: These days we are lucky to have so many choices of medications these days, the vast majority of which have very few side-effects. I doubt that any combo you choose these days would involve any significant burden or change in your "lifestyle". Choose a regimen, take it on a regular schedule every day, and there's a great chance you'll be just fine. While you don't have to let HIV define you, neither can you ignore it. You will have to make time to see your doctor, get blood tests, get your medications, and take them.
This particular sentence you wrote seems judgmental to me:
However, I have been determined, since I was diagnosed, that I will not let HIV run my live, that I will not live for it - as some people seem to.
HIV affect different people to different degrees. So if you think there are lots of folks out there who choosing to "live for" HIV, you are mistaken. Most of them are doing the best they can to cope with this disease and how it is affecting them.
Cheers,
Henry
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I had cd around 220 when I started.
Rash sucked. Missed 3 days of work over it.
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Hi Mark,
Thanks for that, I'm very glad to hear it, and I'm quite sure I want to start on it...Hopefully I won't develop any of the same rash as Surf18 did. I will speak to my doctor about it again first, of course.
About the comments below, I know I cannot ignore it... and I don't think I have, or will. I have made time for all the things that you named there, and that will continue.
And the comment which you find judgemental was exactly for me to avoid the judgement of those who cope with it in a different way than me. Often on this site I've found patronising comments from people who had forms of coping with it, and showed very little mercy to people who did not share their views.
Anyway, it wasn't a judgement on them, it was just so that I wouldn't get replies from people "trying to put me in my right place". Know what I mean? All I'm seeking in this post is advice on treatment...and everyone has been wonderful so far! ::)
While you don't have to let HIV define you, neither can you ignore it. You will have to make time to see your doctor, get blood tests, get your medications, and take them.
...
HIV affect different people to different degrees. So if you think there are lots of folks out there who choosing to "live for" HIV, you are mistaken. Most of them are doing the best they can to cope with this disease and how it is affecting them.
Thanks again for your help!
And Surf18...that sucks...what did you go on to next?
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I went on selzentry and truvada