Started meds: Kivexa and Viramune

[Morto]

Hi guys! 

I made a post here asking if I should start on meds because my CD4 was near the threshold. The general opinion here was that I should start, so I decided that I would tell my doctor this, however a second set of bloods showed my CD4 had gone up to 493! So we decided to wait a month and check my levels again then decide from that. Well my last CD4 was 389 so that decided for me. My viral load had decreased to 6000 (down further from 8000) and my CD4 % is 22% (what does this say to you? Even though it may be irrelevant I would love to know what this means) I still find the low VL unusual, but my doctor just said I must have a strong version of the virus that doesn't need lots of copies to reduce my CD4.

Anyway, on to the meds!

Yesterday I took my first dose. I've been prescribed Kivexa and Viramune (starting 1 a day moving to 2 a day with the Viramune).

My doc said the double dose of Viramune can be changed back to a single dose after a few months, yet I have not been able to find this mentioned anywhere else, is this true?

What are the main side effects I can expect with this combo? Be it short term like diarrhea or long term like lipo (please god no). Brain fog and fatigue will be the worst for me because I'm a web developer and I need my brain to work with maths and logic, which it isn't very well at the moment. Hopefully once my CD4 goes back up my fatigue will go away.

I've booked 3 days off work but I feel fine at the moment minus a cold, so even though I'm happy that I've got no immediate side effects it was probably a good idea to take those days off anyway!

My boyfriend!

I'm very, very lucky because my boyfriend promised me that if I needed to start treatment, then he would start too, having him there as support has made me feel worlds better. His CD4 did actually drop slightly on his last test (468) so this is probably a good time for him to start anyway.
We both visit the same clinic, same doctor, have appointments together. So on the day we actually saw the doc separately, and the doctor gave us free choice of meds and just told us various side effects and helped us match what was ideal for our jobs and habits etc.

He was prescribed Prezista, Trivada and Norvir. I've been researching and I'm quite worried that his combo seems to have lots more side effects than mine (lipo, heart problems (this is huge since heart disease runs in his family) and osteoporosis (also runs in his family)). He just told me the doc recommended this based on the fact that he only wanted to take pills once a day and he didn't want to get any dizziness as he is a driver and this would obviously be very bad! It just seems to me like the combination I chose would have been just as good for him without the side effects? He has been poz for 7 years now and has 22k VL at last test. Would it be possible for him to change to my combination if side effects do come up later?


I'm sorry if I sound ignorant here, I've just dived into the world of HIV meds and it is going to take me a while to absorb this ocean of information regarding all the different drug types, combinations and side effects, so thank you in advance for reading this!

[eric48]

Hi,

I have collected quite much info about this combo here:

http://forums.poz.com/index.php?topic=33062.0

it is a bit long, but I hope you will enjoy the reading. I made it for people like yourselve, new to meds , etc.

Cheers

eric

[ad2san]

Hello There,

in my opinion you took and your BF took a great decision. Concerning the side effects you need to remind that people are not all the same, there for some side effect may or may not happen .... not everything that is written on the warning will, by chance, happen; and for most people nothing happens at all.

Also modern pills have very very few side effect as the "old" ones (like AZT etc ) and as a consequence it does not show that you are under treatment ....

Try to forget it, take your pills bravely as requested by your doc and you and your BF will be fine !

Cheers

[Ann]

Hi Morto, welcome to the forums.

I'm on the same combo as your boyfriend and I don't have any major problems with it. I did have some side-effects in the first few weeks, but they dissipated in time. It generally seems to be one of the most side-effect free combos for most people.

My doctor ruled out me taking any combo that included abacavir (which is in Kivexa), not because I have the gene that indicates a strong possibility of having a hypersensitivity reaction to abacavir, but because I'm a smoker and abacavir carries with it a risk of heart problems on its own, without being a smoker.

You have to understand that the possible side-effects associated with any med are just that - possible - and not necessarily probable.

Regarding the dosage of Viramune, what your doctor is recommending is the standard treatment protocol for that drug.

You can read more about all the meds you and your boyfriend are on in the Treatments section of this website. In the case of pills that contain more than one drug (like Kivexa and Truvada), I strongly recommend you read the pages that are concerned with the individual drugs, in addition to the pages on the combo-pills.

Again, keep in mind that not everyone will get the side-effects listed. Some do, true, but most don't. Try to not worry about them too much. Side-effects like nausea, diarrhea and fatigue can be closely tied to our mental state and stressing over possible side-effects - even ones that haven't even happened - won't do you any favours.

Ann

[eric48]

agreed...

Apparently somepeople get back to 'normal' life within a few months

Me, being a bit older, I'd say it took me 2-3 years. But most os it is due to the initial shock.

With reading through this forum you will see that if you do to the right thing (be adherent), you should be fine.

Ann : only recently I have noticed that you have decided to go on meds.
It is not that bad , is it?
Well in anycase welcome tro the club...

Morto: welcome to the forum

Cheers

Eric

[eric48]

Brain fog and fatigue will be the worst for me because I'm a web developer and I need my brain to work with maths and logic, which it isn't very well at the moment.

This is a tricky one... Many people would mention 'brain fog' or fatigue. And I would too.
Strangely enough these periods usually follow periods of intense intellectual and creative activity !

There is a study that shows that people taking Kivexa (and its main 'culprit' abacavir) are doing in fact better than controls in neuro cognitive tests ...

ERic

[Morto]

Thanks for the replies!

Also modern pills have very very few side effect as the "old" ones (like AZT etc ) and as a consequence it does not show that you are under treatment ....

Try to forget it, take your pills bravely as requested by your doc and you and your BF will be fine !

Cheers

Yes, I was looking at side effects for the older regimes and it really put me in my place, I feel so fortunate to have the meds I have, not to mention for free (NHS). Thank you!

My doctor ruled out me taking any combo that included abacavir (which is in Kivexa), not because I have the gene that indicates a strong possibility of having a hypersensitivity reaction to abacavir, but because I'm a smoker and abacavir carries with it a risk of heart problems on its own, without being a smoker.

Ah, for some reason I thought mine was the most heart friendly, well I'd much rather prefer it be me on these than my boyfriend in that case, it seems that the possible major side effects on each side suit us both to what we can afford to risk and what we can't. I'm certainly not going to waste any time worrying about side effects because as long as I'm informed there is nothing more that I can do. That has always been my stance with HIV: if I spend a second worrying about HIV that is another second of my life taken by HIV and I don't intend to let it take any more of my life!

This is a tricky one... Many people would mention 'brain fog' or fatigue. And I would too.
Strangely enough these periods usually follow periods of intense intellectual and creative activity !

There is a study that shows that people taking Kivexa (and its main 'culprit' abacavir) are doing in fact better than controls in neuro cognitive tests ...

ERic

Eric, thank you so much for the research you have collected, you literally saved me weeks of Google! I've read all your thread, the ups and the downs, it was like a novel (you have a good writing style too!). I might sound strange but you remind me a little of myself in the way you researched the topics and came to conclusions.

I've always personally observed a cyclic pattern with my cognitive abilities, I will have weeks where I'm hazy and don't want to think about anything, then out of nowhere I get a burst of inspiration and some great idea and I'm away developing it and stuck in lines of code like there's no tomorrow. It will be interesting to see how this happens and thanks to your reassurance I'm more positive than ever (harhar).

So far we are on day 3 and although I've had a bad cold (99% sure is unrelated) neither of us have had any noticeable side effects yet (fingers crossed). I'll keep you guys updated on how we do!