POZ Community Forums
Main Forums => Living With HIV => Topic started by: AC_72 on June 30, 2006, 10:42:19 am
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Hi....I'm new here (2 months since conversion). I've been reading about when to start drug therapy and wondered if anyone other than DHHS and clinical providers has info they might share? My initial thought is to start now.
Thank you!
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Hi AC, welcome to the forums. Be sure to read the Welcome Thread (http://forums.poz.com/index.php?topic=277.0) at the top of the Living With HIV Forum (http://forums.poz.com/index.php?board=2.0) for links to other sections of this website.
There is a section in the Lessons (http://www.aidsmeds.com/lessons/StartHere1.htm) on starting meds... Check out the links on the right hand side of the main Lessons page.
It's difficult to discuss your particulars when we don't know what your numbers are or if you've had more than one test result. Normally, several results are needed over a period of months so a trend can be seen.
If you are newly infected as well as newly diagnosed, you might be able to go for years without the meds. I've been positive for nine years now and still don't need them. The meds are a big committment and not something you want to take without lots of thought - unless of course your numbers are really bad.
Let us know what your numbers are so everyone has something more to base their replies on.
And hang in there, the first few months are a rollercoaster ride. It DOES get better!
Ann
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Two rounds of tests:
CD4 = 332 Viral >500,000
CDR = 338 Viral >500,000
...next round in 30 days per my Dr.
My main concern is VERY SWOLLEN glands in my neck...at times tender to the touch, tired and susceptible to sore throat/strep. (UGH! I feel like such a mess!!!)
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....PS...I read the Lessons. All VERY good information....makes me lean toward taking over waiting...if nothing more than to get rid of the swelling and stop the disappointing test results. ...?
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Hi AC,
I just re-read your first post and I see you say it's two months since conversion... can I take that to mean you are only recently seroconverted? I seem to remember reading something about starting the meds early really only has any benefit if they are started during or very shortly after seroconversion. You will have to discuss whether starting now is a good idea or not with your doctor.
Your high viral load and medium CD4 would support the idea that you have a new infection. They are perfectly normal numbers at this stage of the game and they will likely improve very soon. It's very common to have such a high viral load for the first few months - don't let it frighten you.
Just a word about your swollen glands... if you keep touching them to check on them, chances are very good that this is the reason why they are remaining sore and swollen. They will react to constant touching - they don't like to be poked and rubbed all the time. Try to leave them alone - it can take as long as a week or so for them to come back to normal after being irritated.
You don't seem to be getting many replies here and you would probably get more if I moved your post to the Living Forum. Let me know if you want your thread moved. (I have magical powers LOL) ;)
Ann
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Yes, 2 months since seroconvertion. Thank you for the supportive information!!! Sure, if you could move my posting that would be great. THANKS MUCH!!! :)
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Hi AC,
I've moved your post as requested. Hope you find it ok! :D
Hang in there... I'm sure a few others will chime in with their own experiences and opinions. Just remember though, this is something that you and your doctor must ultimately decide together. Consider yourself in a partnership with your doctor, and don't forget that he works for you.
And just a side note, you might find it helpful to print things out or write things down that you want to discuss with your doctor and take extra paper to write on - and don't forget a pen. Also, ask for copies of your labs. It's so easy to forget what you wanted to ask about or what the answers were. Write it all down and you won't have that problem.
Hang in there...
Ann
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I was diagnosed shortly after seroconversion and had 700-something CD4s and a viral load >200,000. My doc wanted me to do meds for a year. I went ahead and did them. I quickly dropped below 50 for VL and CD4s soared. I then stopped the meds for nearly 2 years with good numbers, but have recently seen problems.
Some studies show that stopping meds for short periods of time can be dangerous. Some people seem to do ok with it. I am currently at 450 CD4s, had my third lab results that show declining CD4s. I'm seriously thinking of going back on the meds. I worry all the time about it. Maybe I'll stress less on the drugs.
Talk to your doctor about it. There are pros and cons for both. Take care.
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Thank you for the information - and your experience! I've been doing more research and talking to a few more people and waiting right now is probably the way for me to go.
On a parallel note, unfortunately a friend of mine just found out he is in the middle of seroconversion. (Something about 5 of the 10 something-or-others have converted???) Anyway, the Dr. suggested he do some meds for 1 year...sounding similar to your experience....and he has to make the decision to begin them or not by Monday. He is feeling like needing more information and would probably benefit from your experience - positives/negatives.
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There is 2 schools of though about this. 1: Hit early, Hit Hard. If you start your meds with a relatively high CD4 count then it becomes possible to take STIs (Structured Treatment Interruption) like DCGUY. For some people these STI's can last up to 3+ years and allows your body to recover from the physical effects of the meds. It also helps to allievate the mental effects of HAART.
2: Wait until your CD4's approach 200-300. You put off taking the highly toxic HAART for as long as possible without jeopardizing your immune system and developing AIDS. For some, this can be an extremely long time----years before they ever begin and in so doing lower the risk of ever becoming resistant to a certain regime.
There are members here who believe fervently in one approach or the other. There was a great thread on this over in the old Forums. There is a way to acces it, I just don't know how.
Like Ann said, read the lessons. That will answer most of your questions.
Whatver you do, don't do what I did; wait until your T-cells bottom out at 18 and you're sick with PCP. I don't recommend that.
robt
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As this might be one of the more important decisions you make regarding HIV, I urge you to do all the research that you possibly can, starting with the LESSONS and the threads in the "side effects" forums. You need to know what you are contemplating, and the ramifications for your future.
This illness, and the drugs used to treat it, seem to impact every individual in a unique way. It's your responsibility to get all the information you can, anecdotal and quantified, and make the most informed decision possible.