CD4 counts

[Denvaux]

This issue of CD4 counts gets me confused at times or maybe worried is a better word than confused. I got my poz confirmation back in February 2006 and for the past four years I've been doing bloods for monitoring every 3 t0 4 months pretty religiously. My specialist has just told me that he would now like me to do bloods every 6 months - that's just twice a year.  My count was pretty much steady between 380 - 420 for 36 months and recently (my last two counts) were just below and just above 500 irrespectively. I'm told that my CD4 is pretty much average now and I was wondering does anyone on here know of this situation CD4 rising rather than falling and should I be concerned about the fact that I will no longer be monitored three or four times a year but only twice?  Maybe I'm paranoid but I fear this change from every 3/4 months could be more about cost than about my well being - it's worrying.

[Andy Velez]

Denvaux, those are good numbers. They do have a tendency to fluctuate at times for various reasons and often inexplicably. I definitely don't consider those to be dramatic shifts in numbers. The important thing is to see if there is a pattern over a period of time rather than just the occasional blip.

I suggest you express your concern to your specialist. See what he has to say. Sometimes just having a conversation about something like this can give you the reassurance you need. He may feel you're in good enough shape to make more frequent testing unnecessary, which is what I suspect maybe behind his suggestion.

[Miss Philicia]

I think a lot of doctors are spacing out visits, once a patient is stable with treatment, to every six months.  I don't think it's about cost if you have private insurance or even Medicare, as they will actually pay for lab costs monthly if necessary.  It's really about making life easier on the patient.

[Hellraiser]

I think a lot of doctors are spacing out visits, once a patient is stable with treatment, to every six months.  I don't think it's about cost if you have private insurance or even Medicare, as they will actually pay for lab costs monthly if necessary.  It's really about making life easier on the patient.

This is exactly the reasoning my doctor used.  He said once my numbers were reasonable he would swap me from quarterly visits for blood draws to bi-annual visits because frankly my numbers just wouldn't need constant monitoring and it would be easier for me to get into his office.

[Inchlingblue]

I think Denvaux's concern is because he is not yet on meds; also, he's in London, so they might have different rules as far as what NHS pays for.

If you are on meds, then every 6 months is perfectly reasonable after it's been shown that you are stable. If you're not yet on ARV meds, every four months would make more sense.

I forget what the new EU Guidelines say but if your CD4 nadir was 380 then you should probably start meds anyway, unless they're very strict about it being 350 for starting.

You mention in a previous post that they don't always check for viral load. As a rule of thumb, the higher the VL, the more chances there are for CD4s to drop, so it's good to know this number since this can also have an effect.

Can you ask the doctor would it be OK to check every 4 months since you are not on meds?

It's probably a good idea to start doing some research to see what combination of meds makes the more sense for you so you're ready when it comes time to start.  Do you know if they've done resistance testing?

[Miss Philicia]

Oh, for some reason I thought this person was on treatment already.  Well fuck that, I'd go every 3 months if I wasn't on treatment and had those numbers, but then I'm conservative with things like this.

[leese43]

Oh, for some reason I thought this person was on treatment already.  Well fuck that, I'd go every 3 months if I wasn't on treatment and had those numbers, but then I'm conservative with things like this.

Ditto

I looked back on your previous posts and was surprised to see that they never do your VL. I'm in London and as you can see from my numbers below they monitor both CD4 and VL. I have blood taken every 4 months and would refuse to allow them to stretch this to 6. If your clinic insists on 6 months then maybe it's time to transfer your care.

[tednlou2]

My doctor told me on my last visit that I'm "doing so well" that he only wanted to see me every 4 months.  I'm not on meds yet, but have good numbers (knock on wood).  I told him since I'm not on meds yet, I would prefer to stick to every 3 months.  I get worried my numbers will crash all of a sudden (I know, probably very irrational), but going 4 months was too long.  I can't image waiting 6 months.

I think once I make that plunge into meds, I would get comfortable only going every 4-6 months.  If you're not comfortable with it, I would definitely speak up with your concerns.

[Denvaux]

That's correct inchlingblue I'm not on ARV treatment yet, nor am I looking forward to it either. Your post along with the post by lees43 was pretty much my gut feeling - my hunch. I have no intention of allowing this change from my regular 3- 4 month blood monitoring to six monthly intervals - that is just not on. Coming on here for feedback works wonders and takes the edge off the worry I really cant fault this forum. Tedulou2 I don't think I ever had numbers as high as 1000, here's hoping that my understanding of average or normal as anything between 500 and 1200 is correct.

Thanks all.

[Inchlingblue]

You should not be scared of the HIV meds, they have really come a long way from what they were in the past and you have the good fortune to live in a country where you can have access to them without the added stress and worry that you might lose coverage, etc.

And keep in mind that if you start when your numbers are still good there are fewer chances of experiencing adverse effects and better chances of immune recovery.

Assuming you have no resistance, the current guidelines consider the following combos to be Preferred Options (in the US and I believe also in the EU):

Atripla
Prezista/Norvir/Truvada
Reyataz/Norvir/Truvada
Isentress/Truvada


Dr. Gallant gives his opinion on the pros and cons of each of these combos, LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151

[megasept]

I think once I make that plunge into meds, I would get comfortable only going every 4-6 months.  If you're not comfortable with it, I would definitely speak up with your concerns.

On or off meds, after a long time---years especially---you may not worry much about 4-5 mos vs. 3; you'll see your MD less often in general and quickly anytime you suspect anything (doesn't have to he HIV-related). That's my experience.

Steven (aka  megasept)