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Author Topic: When to start meds and how to make that decision....  (Read 3163 times)

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Offline impossibleisnothing

  • Member
  • Posts: 8
When to start meds and how to make that decision....
« on: August 30, 2007, 04:07:19 PM »
First, let me say thanks--I lurk here a lot and I really appreciate all the comments and help this community has given me in the past six months.

My background:
I was diagnosed in February 2007 from a life insurance blood test--had no idea!

Exposed in August 2006, and I believe I seroconverted in November 2006 (I was soo sick for a month then and couldn't figure out why I had the "worst cold" ever).

Contracted HIV from my boyfriend, who got it from his ex.  (They had protected sex *almost* every time, and she KNEW she was positive, but was too afraid to tell him. Unbelievable).  We had both been previously tested negative, so we honestly weren't even worried until that crazy life insurance test turned our lives both upside down.  Since our diagnosis (I found out first, he tested positive 2 days later), we've gotten closer, but struggle to be supportive to one another while we are both going through our own process of grieving/acceptance/what next etc.

My labs so far have been:

2/07:  CD4: 389  VL: 31333
3/07:  CD4: 477  VL: 10297
5/07:  CD4: 473  VL: 10984
6/07:  CD4: 670  VL: 20003

I will have new lab numbers on Tuesday.  I am not on meds now.

In addition to HIV, I found out I have HPV and HSV2.  I was on birth control (nuva ring) until June 22, when I was diagnosed with several pulmonary embolisms.  Now, I'm on coumadin for that. 

I just saw my hematologists (for blood clot follow ups), and he is a well-respected doc at a teaching hospital in DC.  He's taken care of many HIV-hemophilia patients, so is more familiar than the avg. doc about HIV.  He asked me why I’m not on HAART yet because my VL is “high” and my CD4 is “low.” 

My ID doctor and I have discussed this at length, and she is in the what I call “goldilocks” group—don’t start HAART too soon (like as soon as you are diagnosed regardless of cd4/vl) and don’t wait until NIH says so (cd4 below 250, vl 100000+ or contracting an OI).  I was pretty comfortable with this because, although I’d rather be aggressive than passive in treating my disease, I want to be around for a very long time and no one knows what the long term effect HAART has on heart/lung/liver/kidney function, so I don’t want over-aggressive medicating now to bite me in the ass later when other HIV therapies are discovered that keep my virus in check with less/no side effects, but I am dying from kidney failure or some such thing. 

My hematologist seems to be in the “abundance of caution” group—the idea being (and studies have shown) that the sooner you are on HAART, the higher your CD4 count gets/stays.  He even recommended that I go see another ID doctor just to get a second opinion so I can weigh my options and decide what I want to do.

I am already on a pretty strict regimen of medications, so I am not worried about adherence issues of taking HAART.  Also, I’m 31 and I would like to get pregnant in the next two years, so that is a factor.  My ID doc and I figured that by February of 2008 (my one year mark), I’d probably start HAART anyway to get my VL to undetectable in preparation for a pregnancy.  I won’t be able to be pregnant while still on Coumadin, and I must be on that at least until June 2008, so that was sort of my new timeline (although if I did get pregnant before then, there are alternative blood thinners I can take that won’t adversely affect my pregnancy).

Gosh, that was a lot of background…

Anyway, here are my questions:
1)   What do you consider to be a “high” VL?  What is you/your doctor’s cut-off number where HAART is mandatory?
2)   What do you consider to be a “low” CD4?  I’ve heard 500-1500 is normal, but I’ve also heard 350+ is ok. 
3)   Are you on HAART? If so, what made you begin therapy?  If not, why not?
4)   I get the sense that the decision to/not to take meds is less a science and more a combination of the person’s healthiness/lab results, the doctor’s predilection for a certain type of therapy, and your own sense of what’s right for your body.  Did you get a second opinion from another ID doc?  How do you go about assimilating the information you read/research about HIV, what you hear from your docs, and what you know about yourself and your own body?

Thanks in advance!

Offline Dragonette

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  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: When to start meds and how to make that decision....
« Reply #1 on: August 30, 2007, 06:50:02 PM »
Hi there,

let me just welcome you to the forums. I hope you work out the issues with your partner. It will probabaly take time but I hope you give it a chance, b/c compared to some of the shocking stories here, he is not a bad guy. But I can undestand the shock and need to adjust, and myself have no one to blame so I don't quite know what it feels like, just expressing my gut reaction here.

Sorry I have no advice re the meds, b/c I never had a choice, as low as my CD4s were, I got put on meds even before the confirmation test came through. I would however wait it out, since you do hear of some lucky people going years and years without them. But there will be more experienced people along with sager advice I am sure.

All the best to you,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline HealthyMomma

  • Member
  • Posts: 128
Re: When to start meds and how to make that decision....
« Reply #2 on: August 30, 2007, 07:01:06 PM »
First off welcome! I am still pretty new here myself. I am so sorry to hear about your diagnoses, but as you will see, this disease seems to make its way around! I have only been poz 4 years so I am sure there are people that are more 'qualified' to answer your questions than me, but I'm gonna give it a shot. Viral load I am not too sure about. CD4...I think 350 is the line I consider low. I am on meds right now basically because my cd4 has always been really low and viral load super high. (They are working great by the way.) My doc took labs and said you need meds! We talked about the different kinds and that was that. A word of advice about starting meds: dont start them unless you read up on them and know you will be able to take them and stay commited to taking them as prescibed. My first combo lasted a few weeks and I gave up....now I have resistance to one of them. I wish you well!

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,618
  • Diagnosed + 1989
Re: When to start meds and how to make that decision....
« Reply #3 on: August 30, 2007, 09:35:10 PM »
Hey Imposs-
  Welcome to our group!  You're going to love it here.  There is so much support, especially from us women. 
   As for the meds, that decision is between you and your doctor.  For myself, I've been on meds since the early 90's, when basically it was mega-dosing people with AZT.  One time my hemoglobin dropped to "2" and I had to get a transfusion.  Thank God the meds have improved along with the right dosing of them.  I've been on different combinations for the past I don't know how many years.  My viral load was over one million a few times, hence the reason I've been on different therapies.  Your CD4 count is really good.  I, personally, wouldn't start too soon.  Even your viral load isn't outrageously high.  Mine, last time it was tested, was 90,000.  What is your percentage?
   Like I said, welcome and I hope to hear more from you!  Take care.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: When to start meds and how to make that decision....
« Reply #4 on: August 30, 2007, 10:08:37 PM »
Welcome to the Forums. Since you have been lurking, you have an idea of what goes on here a little bit. There are wonderful people here full of good advice. Many has been dealing with this virus for quite a bit. I, myself, have been poz for going on 10 years this year and am not on any meds yet. My last cd4/vl was 340/24,700. I have chosen with the advice of my ID doc not to start meds unless my cd4 drops to 250 or vl goes to 100,000. Some believe that 250 is too low but I am ok with this. I just had blood drawn yesterday and an appointment next week with ID doc. Hopefully things will turn out alright but if things go south, I am ready to start meds. IMO, it is a personal choice of when you want to start and I agree with Betty, your numbers look pretty good to me.

I wish there was something I could say about your bf but everyone handles the news of finding out they are infected different ways, some not always good. I know it may sound crazy but can relate to his ex gf being scared to tell him, it's not the easiest thing for people to do, including myself. I hope that things will work themselves out for you and that you both can be supportive of each other. It sounds like to me that your bf needs time to accept what is going on and you seem to have grabbed the bull by the horns.

As far as the other things you mentioned, I have no clue on what to tell you but I am sure someone will come along that will answer those questions for you. Hope to hear more from you in the future.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
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