POZ Community Forums

Main Forums => Living With HIV => Topic started by: Valmont on May 24, 2012, 07:18:53 pm

Title: Last results, a decision needed...
Post by: Valmont on May 24, 2012, 07:18:53 pm
Hi ladies and guys...

Well I´ve received my last lab results and I believe it is time to start meds...

I´m quite surprised because of the jump of my CD 4, last 6 months...

May 2012: CD4: 395 VL: 67 k
Dic 2012: CD4: 714  VL: 95 k
Jun 2011: CD4: 504  VL: 176 k

I haven´t done a resistance test yet...  Hope I can do it by my own at the beginning of june...

I only have my appointment to the doc at the end of june...

1- Should I move it to go earlyer?

2- I´m thinking of starting meds (Efavirenz,Emtricitabina,Tenofovir) as soon as possible, I understand it is a lost of time waiting for a CD4 improvement, right?  Here, the access to meds can take a couple of months because of bureaucracy, in that time, can my CD4 decrease more and go under 350?

3- Last times, I´ve been tiredest (but less diarrhea's...), also I loose some weigh despite eating good and exercice.  Can I expect the meds will give me some more energy?  Can I expect be better in regard to weight? in regard to sport rendement? (in last Rugby game -well, fortunatelly, I´ve been playing last months...-  I have felt weak and pathetic)

Your opinions, tips and comments will be well received...

Title: Re: Last results, a decision needed...
Post by: Matty the Damned on May 24, 2012, 08:01:36 pm
Val,

Do you know your CD4 percentage? Personally I'd be heading towards treatment with those numbers (certainly getting a resistance profile) and knowing the percentage would most likely seal the deal.

MtD
Title: Re: Last results, a decision needed...
Post by: Valmont on May 24, 2012, 08:16:34 pm
Thanks Matt, unfortunatelly labs here never give this valuable information...
Title: Re: Last results, a decision needed...
Post by: Matty the Damned on May 24, 2012, 08:25:09 pm
Thanks Matt, unfortunatelly labs here never give this valuable information...

Ask for them. They're a very useful thing to have.

That said, I'd still be opting for treatment if I were in your shoes. I dicked around with medications for a long time and whilst I don't regret my decisions I do rue and lament them. :)

Get that bad boy under control and preserve your immune function.

MtD
Title: Re: Last results, a decision needed...
Post by: phildinftlaudy on May 24, 2012, 08:31:35 pm
Valmont -
I agree w/ Matty -
the viral load itself is probably taking a toll on your body.... just having to fit it off and  keep the cd4s where they are is probably a heavy chore for your body.

For me, going on meds was an easy decision when I dipped below 500 the first time as I was starting to have more stomach issues, more fatigue, more of everything (colds, fevers, etc) --- I am not someone who handles being sick very well.

I don't like feeling "off."

I would inquire at the lab about your cd4 % - many times docs/labs don't provide these things... but once a patient asks and they see that the patient is interested in being an active and informed participant in their care, they usually will go out of their way to provide the info.

The decision to go on meds is definitely an individual one - as long as you are willing to make the commitment and have access to the meds - I would say go for it.

Hope you get some additional feedback and glad to see that you are staying on top of your numbers and being proactive.

Title: Re: Last results, a decision needed...
Post by: Valmont on May 24, 2012, 11:38:30 pm
Thanks guys...  Definitively I cannot get CD4 percent, I ve asked for it to my lab, they told me that only docs can ask for it, they neever do it and anyway they don t have the information they say...  When I asked to my doc, he says that the CD4 value could allow estimate it......

.... That is why I would like to be in Canada in 2013.

Is it safe to wait 2 more months to get on meds?

With or without the percentage, because I m under 500, I would like to go on meds...
Title: Re: Last results, a decision needed...
Post by: tednlou2 on May 24, 2012, 11:59:01 pm
Just wanted to say I wish you all the best making this decision and all the best with the meds.  Although, it sounds like you've already made the decision and are just wondering whether to wait a couple more months. 

Btw, where are you where they don't do a CD4%? 

Again, all the best and let us know how it goes.   
Title: Re: Last results, a decision needed...
Post by: Rev. Moon on May 25, 2012, 12:10:50 am

Btw, where are you where they don't do a CD4%? 


He lives in Ecuador at the moment.  He's in the process of moving to Canada.

Valmont, good luck getting this sorted out.  You should be ok for a couple of months. 

Title: Re: Last results, a decision needed...
Post by: Valmont on May 25, 2012, 12:49:02 am
So I ve talked to my doc and we re going to ask for my med to be available from july, anyway my doc told me they had a lot of problem with the lab....

Doing the resistance test, i will ask for a VL and CD4 in a US lab, it is expensive, but so useful, I won t hesitate...

A question, is it possible, in you experience, to see CD4 moving from more than 700 to less than 400 in 6 months without any particular health issue?

About going on meds, my decision has always been to do it when my numbers get down 500, I feeel very well about starting treatment (inclusive, I would feel quieter...).

Many thanks for the answer, you are wonderfool people and very supportive...
Title: Re: Last results, a decision needed...
Post by: tednlou2 on May 25, 2012, 01:11:55 am
A question, is it possible, in you experience, to see CD4 moving from more than 700 to less than 400 in 6 months without any particular health issue?

It appears your viral load is eating up those CD4's.  But, I'm still learning about all this myself.  I had a drop of about 300, when I was stressed from a huge family argument.  And, recently when I had a large node/mass pop up in my armpit, it dropped a couple hundred points.  However, they returned to where they were and my viral load was stable both times around 10-15 thousand.  The time period between your labs seems to exclude "off" labs due to stress, a cold, or vaccination.  But, the better informed folks here can better answer that.
Title: Re: Last results, a decision needed...
Post by: newt on May 25, 2012, 04:26:40 am
Hello Valmont

CD4 counts vary by +/- 100 easily. This is because of 1) the limits of the test 2) things like time of day, sleep etc that affect where CD4 cells are in your body (the do move around a lot). To my mind your first and newest CD4 results are basically the same.

CD4% is not used in guidelines for starting treatment decisions, so I personally wouldn't fret about not having it.

"Normal" CD4 range starts at 450-500.

So I believe there is no rush, a few month's before starting meds will be safe.

This said, if organising treatment takes time where you are, perhaps putting the wheels in motion is a good idea.

- matt
Title: Re: Last results, a decision needed...
Post by: Valmont on May 25, 2012, 10:38:55 am
Well, I think it is safe to wait a little more...

In december, I ve been vaccunated a month before my CD4 count, could this generate an answer from the immulogical system and rise my CD4, this can explain my good number in that time... Just want to understand...
Title: Re: Last results, a decision needed...
Post by: newt on May 25, 2012, 03:27:33 pm
Vaccinations (as can infections) raise your CD4 count for perhaps 2 weeks

- matt
Title: Re: Last results, a decision needed...
Post by: Valmont on May 27, 2012, 11:09:45 pm
Thanks Matt, I m almost sure this was what happened.

This changes many plans... 

I talked with my doc, will make another CD4 count and resistance tests in an US lab.  I will be added to the national plan immediately for having my meds at the beginning of july, then wait 15 days (in order to make a stock)  and start the treatment...

Last days were bad days, no because I have to start meds, because of the surprise of getting this CD4 count when I had a good one few months a go...  I like planning my things and my life and this accelerate everything...
Title: Re: Last results, a decision needed...
Post by: Valmont on June 04, 2012, 02:48:23 pm
I´ve at my lab to get my results and surprise, they don´t have reagents and cannot process them, so I´ll have my results in 20 to 30 days more...  That means 40 days for having a CD4 result...  I hope I can have them before my appointment with the doc...  That sucks !!!

For resistance test, my sample has been taken, it will also be a month to wait for that...

Title: Re: Last results, a decision needed...
Post by: Valmont on June 26, 2012, 11:31:46 am
So I have my last CD 4 lab results and they are at 367, definitively I have to start meds and if I could, I would do it today...

Also received my resistance test, it is not so complete as I expected, there is nothing about the kind of VIH that infects me (well it is not the most important, but at the price I´ve paid for it...), but well, in that way I´m really very happy because none resistance have been detected (but Insentress have not been tested too).

I´m still very worried, my meeting with my doc is not at the end of June but July, so I won´t start med till I have it and have to consider some administrative times for delivery meds, it is because my CD 4 is upper than 350 and "I´m not prioritary..."

I´m planning moving to Canada at the beginning of 2013 and my doc asked about starting meds there.  I´ve been really surprised about that, 6 to 8 months is not a long time for that???  What should I think about meds availability here with that kind of comment !!!

I´ve been feeling my better last month, a little less tired, almost no diarreas for 3 months and no loosing weight anymore for a couple of months too...  Well I´m feeling pretty well and much more better that in 2011...

I´m still very confused and your feedback will be very well received...  I would have liked to start med at CD 500, is it really safe to wait some more?  For sure my CD are not so bad, many here would like to have them and maybe I should not taking things that way...
Title: Re: Last results, a decision needed...
Post by: newt on June 26, 2012, 12:48:37 pm
As guidelines go, your last 2 CD4 tests suggest consider treatment. Perhaps one more test will confirm this, but then perhaps it ain't worth the wait.

- matt