POZ Community Forums
Main Forums => Living With HIV => Topic started by: NewYorkKat on January 25, 2009, 10:07:32 am
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So here are my latest numbers:
T-cell: 449 19% up from 405 21%
VL: 11,100 down from 18, 000
So far it would look like I would not need meds but I have noticed many are starting treatment with "good numbers". I have thought about meds (the one a day pill works for me but I have doubts about Sustiva) So far, one recommended that I should take it.
any advice? What should i do? My doc says it is up to me but I want to make sure the choice I have made is a right choice. I am at a stage that I need to be careful about what decisions I make. I think Ann once wrote that the meds are "a good marriage that ends in a bad divorce".
PLEASE HELP! So far one has given good advice! Any others?
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Hey Kat,
I was almost precisely in your situation when I started meds in 1996.
My CD4s had been in the 600 to 900 range, then dropped to the 440s and stayed there. My viral load increased from about 12,000 to about 50,000.
So, my choice was a little more clear than yours.
That said, if I had your numbers, I would consider starting meds. I believe my success with meds and living with HIV for nearly 24 years was influenced by this decision made in 1996.
I should add the meds today are SO much better than in the mid 90s.
The one caveat I would include with this recommendation is make sure you are psychologically ready to start meds.
It is a commitment and adherence is critical. So, have a good think, weigh the pros and cons and then go with what your gut tells you.
Have you had a resistance test done?
HUGS,
Mark
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I can't really advise you on what YOU should do. You need to weigh the pro's and con's of starting meds and use that info in conjunction with your doctor's recommendations and make a decision.
I can share my experiences with you however -- I never regretted starting meds. My tcell count was lower than yours (288), but my percentage was pretty close (18%) and I had a higher VL (40,000+). I was scared to start, but did so anyway -- with the knowledge that it was a REAL marriage (til death do us part).
So, if I was looking at those results and considering all the building consensus on starting earlier rather than later -- I would be asking my doc for a prescription.
One bit of advice that I will second though -- make sure that you've got a resistance done before starting anything.
Hope this helps.
Mike
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My ID Doc advised me that he recommends medication when a person's cd4 count is between 350-500 ONLY when there is also evidence of HIV related symptoms. He also advised me that he always recommends medication when a person's cd4 counts are at 350 or below with or without hiv symptoms. He did say that the cd4 % and VL should be factored in too. But please remember this is only one ID Docs opinion and I suppose he could be wrong.
Additionally, my ID Doc only treats HIV poz patients. He is a bit differrent than other Docs I have seen. He actually gives two hiv classes a month to all of his patients free of charge. He is an interesting character with a bit of charm.
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Kat - if I were in your shoes, I'd seriously consider starting. Assuming you have access to meds, and plan to stay adherent, there seems to be only upside.
I started much too late (CD4 count of 78), and it has been a 3ish year climb back to your current CD4 numbers.
It is a big decision, and a big commitment, but I find that Atripla is pretty easy to live with, plus a single co-payment, plus highly effective. All the best with whatever you decide.
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Thanks for the replies! All of you!
I'm pretty sure I will start meds but I am looking by the summer. So far, as i can see, my VL has been pretty low and my t-cells have fluctuated betwee, 370 and 495 since I started monitoring them. The percentage has been 18-23%.
I do not have any co-infections. I tested negative on the heps and other STD's. I do not bareback and I rarely have sex. I take pretty good care of myself, hit the gym, eat right, sleep well. So far, I feel like I am in good health.
My doc says my VL is "drug sensitive" and Atripla would be my choice. One of the things that scares me is the drug reaction and the toxicity of the drug. Vivid dreams are fine but concerned about my liver, spleen and kidneys. Lypo another I am concerned with.
The reason I asked this is that i see many people who choose to take meds when their numbers are "normal" see a huge jump in their t-cells and feel much better. I can commit to taking the drug. Maybe I need something to say "You have to start taking meds because it looks..."
Thank again. I will keep many of you posted.
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So here are my latest numbers:
T-cell: 449 19% up from 405 21%
VL: 11,100 down from 18, 000
These numbers shows that your immune system have been hit by the virus.
Personally, no doubt I would considere starting meds.
I think Ann once wrote that the meds are "a good marriage that ends in a bad divorce".
She then probably forgot to mention the same about HIV (if not "a bad marriage that ends in a bad divorce").
PLEASE HELP! So far one has given good advice! Any others?
You may want to take a look at these tools to compare the risks on/out of meds:
EuroSIDA Risk Score: Risk calculator (http://www.cphiv.dk/TOOLS/EuroSIDARiskScore/tabid/281/Default.aspx)
Cardiovascular disease: Framingham risk equation calculator (http://www.cphiv.dk/TOOLS/Framingham/tabid/302/Default.aspx)
Renal function: GFR calculator (http://www.cphiv.dk/TOOLS/GFR/tabid/301/Default.aspx)
You may want also to read the studies made on this subject, like this one (http://aidsmap.com/en/news/3CEC691F-4668-4F12-BC64-E65E0EA6142F.asp) or this post (http://forums.poz.com/index.php?topic=25159.0) (and the study it is pointing to), etc..
You will found many others studies but those above give you the facts.
You may want also to consider others facts such as: starting earlier (higher counts) => less side effects (in most cases, if not none at all).
Isn't this point very important ?
Regarding the long time HAART side effects, IMHO a cure (could it be just functional) will have been found before or in around 10 years, so before the HAART would have cause to much dammages for the very vast majority of people (unfortunately, you have anyway to choose between HIV dammages or HAART dammages).
Labs allows you to ensure that everything goes fine on HAART.
You can still switch your meds if needed, and maybe (worst case) stop them.
Studies have shown that in most cases, you will return to your counts before HAART.
So by starting now, it's like you have choose to put HIV on hold, and replace it by HAART.
At least on HAART, you will have reduce the risk of developping OI/non-OI, restore your immune system (we live longer on HAART than out of HAART, it's demonstrated), etc.
Just few personals thoughts.
When you gonna start meds depend on you and only you of course.
Good Luck
John
EDIT: My aleatory english
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hey NYK
Starting antiretroviral...treatment before CD4 counts drop to 350 or below results in the restoration of immune cell numbers to near normal levels in people with HIV, according to a study published online January 5 in Clinical Infectious Diseases.
YOu can check out the entire story here (http://www.aidsmeds.com/articles/hiv_treatment_immune_1667_15916.shtml) at AidsMeds.
robert
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Hi Kat,
I don't blame you for being wary of Sustiva. I am too and I have no intentions of taking it.
If you want once-daily dosing you can look into Norvir-boosted Reyataz plus Truvada. It's not one pill, but you only have to take them once a day. That's the regimen I'll likely start on.
I don't remember that quote, btw.
Ann
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You might want to practice taking meds by using jelly beans or something similar, just to get a feel for what it's like. Little things like going over to a friend's house and it getting late so you decide to spend the night on the sofa there, but oops, your meds are at home, can mess up your adherence. If you take meds that require food then you must eat whether you're full or not feeling well and don't want anything. Going to the bathroom to sneak your meds at family gatherings or friend's homes gives you a host of strange feelings. Nosy family and friends who visit and find the bottles create an interesting situation for you as well.
I didn't post this to scare you, but rather to give you some idea of the non medical things you might have to deal with while taking the meds.
Rusty
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Hey guys! Thanks for the more replies. It's helping me!
Ann, you said that quote to someone who was thinking fo taking meds as well. It stuck to me very well!
I will keep all of you posted on how I feel and what will happen.
I do take a vitamin before I go to bed each night so I have gotten into the groove of it.
I have a doc appointment on Tuesday and will let all you know what decision is made.
Thanks again to everyone!
Hugs
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A quick update:
I went again to have blood drawn on Jan 15th and I received the results:
TCELLS: 405 at 17% from 447 19%
VL: 1840 from 11700.
Once again, I was told to "wait and see" in April.
Thanks again for the replies!
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Kat -- nice to see your VL continuing to drop. Your CD4s are trending flat right now, but in a nice safe range. Thanks for the update!