Meds or No Meds?

[Salteen]

SO here is my medication story, I have had HIV since birth and am now 22 almost 23.  I was diagnosed when I was 9 or 10.  I started taking meds around 12, took them until I was 18 or 19, I then stopped on my own.  I went back to the one doctor and he wanted to kill me with meds so I went to another doctor and he said I can wait.  The last time I went to the doctor my t cells were 200 and my VL was like between 1,200-5,000.  So coming in February I might possibly have to go back on meds.  However, another thing to add is my Father's immune system can handle it very well.  He has also had it for 23 years and has never had to be put on meds.  But on the other hand my mother has had it for 23 years and pretty much always been on something.  so any thoughts?

[Ihavehope]

I probably shouldn't be telling you anything since i myself am not on meds but I would listen to your doctor.

[RapidRod]

Salteen, you at least need to be on bactrim. Your cd4 is low enough for to contract an OI. you really need to see your doctor. Yes I even went almost 21 years without meds but I always had a CD4 count in the 1400's.  You don't want to get an OI of any kind.

[newt]

Hello

You said: "I went back to the one doctor and he wanted to kill me with meds so I went to another doctor and he said I can wait."

The key word here is wait. Sooner or later a doc, however, conservative and kind, is gonna push you to start meds if your CD4 falls lower.

A CD4 below 200 puts you at risk of opportunistic infections like PCP, which can be fatal, and are nasty to treat.  The treatment for PCP etc is often more horrible to take than combo.

But provided your CD4 stays at 200+ you don't need to be on meds.

Your father's genetic inheritance may give you an edge dealing with the virus yourself, not to be ignored.

Your viral load is low, if you do decide to do meds, after a short (well okay, 6 months to a year), sharp burst of full combo to bring your viral load to undetectable, you could think about taking less as a maintenance regime.

If you want to step away from the guidelines & have a doc who's supportive, you may even start this way, and get very good results, eg by using a single boosted PI like Kaletra or Reyataz. 

Several new approaches to treatment of HIV infection are close to fruition.  How HIV is treated will be different in 3-5 years.  The decision you face now is not quite "Do I /don't I take combo?" but "Do I want to use combo to help preserve my immune system so I can benefit from better, simpler treatments in a few year's time?" I would see taking meds as a "for now" decision.  It may even be the right "for now" decision.  But it is your decision eh?

What do you wanna be doing when you're 30? Which beach do you wanna be sitting on, which forest do you wanna walk through, which city do you wanna be visiting?

- matt

Now playing: Amy Winehouse, Rehab

[poet]

Salteen, I would create a chart.  What were your cd4's like from the beginning of record keeping and what was your viral load from the same point?  Have you had labwork done between stopping and now, about 4 years ago?  Have you had genotyping done so that a good doctor can see what the options might be if you decided to go back on meds?  I would look at that information, what Cliff has brought up, meet with your doctor and see what he says.  Part of you, as you know, comes from your father but part of you comes from your mother.  Even here in the forums, we could look at any number of people with similar this and that but their progression or lack thereof will differ.  So I would focus on you and not your parents.  IF I were you, the low cd4's alone would have me on meds.  I started when mine were down to around 250.  Win

[Coffeechick88]

We all handle HIV differently.  Some can go years without needing meds, others need them sooner.  You are at the point where it is definitely decision time.  You will eventually get to a time where they will tell you that you have 2 choices:  Go on meds or let your immune system deteriorate even more and they'll give your prophylaxis against PCP.  That was what I had to face.  I only had it for 2 years and I was hovering around 200 CD4--that was what they told me.  So talk with your doctor and you can come to a decision based on what he/she says--based on your history and other things, you two can come to an informed decision. 

[Eldon]

Hey Salteen...

I agree with Rod, you do not want to get any OI's. Take care of YOU!

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

[suzieque]

     Hi,
       I agree with many here. You don't want to get PCP or any other OI. I am speaking from experience having just been in hospital with it a couple of months ago. Nasty!! I have found that although I have sometimes been below 200 without prophylactic medicines my CD4 is pretty accurate in representing how well I can fight off infections. I have had a few treatment interruptions and may have more, but next time I won't wait till my CD4 has dropped so low. It is always difficult to weigh up the pros and cons, but never wanting to go through what I just went through again I am grateful for the helping hand the meds have given me! Even if you don't want to start yet taking something to prevent PCP would be a good idea. Best wishes to you!! I hope that all goes well you have a great Christmas!
                     Suzie

[Tucsonwoody]

Add one more vote for taking preventive measures -

I have also battled the PCP devil recently and it wasn't fun and is one of the leading causes of death among HIV+ people - but for me I am even more concered about the CMV retinitis I have (which so far is not a problem) - the day I go blind will be the day I have to checkout for good.  So I take Valcyte for that - (which retailing for $4,000 for 30 day supply should be a crime) and my doc has me take a couple other things to prevent other nasties like MAC and reduce chances for herpes flare ups etc.

And even if you have to take some of these medications now - it doesn't mean you'll take them all forever...some you will...some you won't and you want to be around to see what the next round of drugs in the pipeline can do, right?

Good luck in what ever choice you make -

Kevin