POZ Community Forums
Main Forums => Living With HIV => Topic started by: 9941_K on December 03, 2007, 09:25:05 am
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Hello everyone
As a newbie may I first say its been really nice to have found this forum which so much details and useful info :D
I was tested to be hiv positive in a complete surprise back in late July this year, suspected to have infected late last year :'( I'm doing ok and accepting the change in my life but of coz got other issues dealing with (like disclosure to family & relationship etc... same old story every newbie encounters!)
Now I have another issue to handle - starting meds. So far I've got 3 test results & numbers are not looking good:
Date T4 Count T4% Viral Load T4/T8
27-Jul 143 13.00% 26000 0.22
09-Oct 202 12.63% n/a 0.13
05-Nov 162 11.57% 64000 0.18
Doctor advised me to start meds today but I prefer to wait till genotype test results back. He suggested to have the following combination of drugs:
NRTI:
Zidovudine (AZT)
Didanosine EC (ddIEC)
NNRTI:
Efavirenz (EFZ)
As a complete beginner, could you guys please comment on the above meds combination? Any severe side effects that you experienced or better still, any other options that I may have?
Many thanks
K
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Hey K,
First of all, welcome to the forums. Glad you found us, but sorry for the reason.
In what part of the world do you live? Just asking because the regimen recommended by your doc is not usually prescribed here in the U.S.
Don't get me wrong, it is a good combo and will probably knock the virus on its backside, but it is unusual.
DDI (aka Videx) is a golden oldie, as is AZT (aka Zidovudine, Retrovir). In fact, if memory serves, they were the first two meds approved for HIV treatment and, I believe, are each available as generics.
Sustiva (Efavirenz) or Stocrin, as it is marketed outside the U.S., is also a good drug and very effective.
There are side effect issues with each of these, so make sure you have your doc explain them to you.
I have taken AZT for years, but also have some degree of lipodystrophy. Originally thought it was the Crixivan, but it may be the AZT.
It is one of those things that can happen over time.
On the face of it though, yours sounds like a workable regimen.
Let us know what the genotype says.
OOPS, edited to add: Judging by the numbers/percentages you have posted, I would agree with your doc. It is time to start meds. Yep, definitely so. While you are at it, talk to your doc about prophylaxes you might need to prevent problems with opportunistic infections. If your CD4 drops below 200, which I see it has, you are at risk for a specific type of pneumonia.
Usually, the docs will prescribe Bactrim or Dapsone for this, depending on your tolerance of Sulfa drugs.
Anyway, it is something to bring up with the doc.
HUGS,
Mark
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Why would they have you go on Videx with it's rather high propensity to cause both peripheral neuropathy and lipodystropy? It was my understanding that doctors are more likely currently to utilize things like Truvada first, though maybe I'm missing something here.
Better yet, why is your doctor not just starting you out on Atripla?
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Hey Philly,
That's why I asked what part of the world K lives in. Both of the nukes are available as generics, which is why they are being prescribed in some parts of the world.
Atripla isn't available everywhere yet, including on some Indian reservations here in the U.S.
HUGS,
Mark
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Oh sorry honey. I didn't see you ask where he lived. You know the same thing went through my mind but his profile unfortunately didn't specify. Sometimes I skim things too quickly. :) Multi-tasking, etc.
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Hey K
Just to add my supports here - you really should talk to your doctor ASAP about your concerns with the side effects. Philly is right - neuropathy can get very unpleasant to say the least and lipodystropy should be absolutely avoided unless there's no other choice.
Hugs, Shaun
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I was on AZT for a short period of time in Combivir when I first started and had no short-term sides. Personally I wouldn't go on it again unless all my options were exhausted because of the longer term risks, but everyone reacts differently and some people do fine on it. I have no experience with Videx but you've gotten some noteworthy advice from others on here that I'd definitely take into consideration.
I'm on Sustiva now and it works great for me. Not sure what's available to you, but it's good that you're investigating the meds and making an informed decision.
Good luck :)
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Hi everyone
Many thanks for advice! I'm coming from Asia where Atripla is not available at all. I've asked and checked but the ans is still no, not yet & worst still I don't know when :(
How about this? I'm gonna list out the drugs available here tomorrow and could u please help and suggest further based on the available choices of drugs that I have?
I was put on septrium before but developed severe drug allergy after taking 3 weeks with rash and fever. Now I'm a similiar drug via inhale once a month to prevent pneumocystis pneumonia
Originally I doubt if I should be "challenging" the doc expertise on his choice of drug but seems he may have other concerns in prescribing the cheaper but with more side effects drugs in view of the growing number of patients. So it's always better to check and ask further & bring up to doc like what Mark said :)
Big thanks again for all your kind advice!
Hugs
K
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I did DDI for a number of years and I think it is what caused my lipo. It is not too bad but I noticed it starting in 95 and got off it then which I think halted the progress. It is an easy drug to take but it is old and came out in 88. I was on a study of it at NIH(national institutes of health) at that time.
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Many thanks for advice! I'm coming from Asia where Atripla is not available at all. I've asked and checked but the ans is still no, not yet & worst still I don't know when :(
K, talk to your doctor first. Atripla IS available in where you're, but it may not be made generally available to all new patients. In where you're the doctors have yet to prescribe it regularly on new patients and I suspect they're giving out old generic drugs for cost-saving reasons. Of course there are many factors to consider and while we don't know whether Atripla is suitable for you, availability is NOT an issue.
Folks here can give good but only general advises - the more practical advise is to first set up an additional appointment with the clinic (or at least calling them) and tell them your concerns with side effects, especially with lipo. You need to make them aware of your concerns and why the risk of certain side effects is a big issue. If you don't voice it your doctor may just decide that you don't have a problem with them.
Shaun
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Hi K,
I currently live in Asia (Thailand) and although Atripla is not available a very close combo is widely available at a reasonable cost as you will no doubt be paying for meds yourself.
Viread (original) 1 pill once per day
3TC/Lamivudine (generic) 2 pills once per day
Stocrin/Sustiva (generic) 1 pill once per day
I have no experience with the combo suggested by your doc but from what i have read the combo i have listed seems to have less side effects and better tolerated.
I started with the mentioned once per day combo but had to change the Stocrin for a boosted Reyataz (available in Asia but very expensive).
Hope this is of some help.
Good luck.
Thescot
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The "inhaled med" you're taking to prevent PCP is Pentamadine, most likely.
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i agreed with thescot, I would ask my doctor for this combo:
Viread (original) 1 pill once per day
3TC/Lamivudine (generic) 2 pills once per day
Stocrin/Sustiva (generic) 1 pill once per day
this is equivalent to atripla (3TC is similar to FTC except FTC lasts longer and so only take once per day). This combo is available in the clinic and it seems easy to take also. in the future when atripla is available, it would not be difficult to switch it over.
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Big thanks to Thescot and mesu for your kind suggestion :-*
The combo sounds better than the original one suggested by doc which requires 8 pills per day ;)
Will discuss further with the clinic and keep u guys posted after my doc visit in early Jan
Thanks again and take care everyone!
Hug hug
K