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Author Topic: Doctor Advising Against Meds - Low CD4 Count  (Read 5423 times)

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Offline tommylance

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Doctor Advising Against Meds - Low CD4 Count
« on: November 29, 2012, 11:46:41 am »
Hello All,

I was diagnosed positive around 3 weeks ago and had all my bloods taken etc.

Anyway, I went back for my follow up appointment today and the figures were as follows:

CD4 - 202
Viral Load - 240,000 approx.

However, she mentioned that given my recent infection (I am almost 100% sure I was infected in May judging by the timing of my seroconversion sickness) it may be better to do another set of bloods before being put on meds straight away because I may just be on the rebound phase and my CD4 count may increase naturally.

I have total trust in her because she specialises in HIV, but I can't lie and say it doesn't make me anxious abstaining from medication with such a low CD4 count. She said it would be safe to go another month with CD4 202 until we get the next bloods in.

I would be grateful for any of you opinions on this approach? I am a healthy 23 y/o by the way.

Thanks :)

Offline Hellraiser

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #1 on: November 29, 2012, 11:49:15 am »
Typically when someone is recently infected their immune system will drop to almost nothing, viral load will spiral out of control and then slowly but surely it will bring itself back into stasis.  You will want to see 2-3 sets of labs before deciding whether or not to go on meds and you want to make sure a genotype has been done to see if you have any resistances before beginning meds.

Edit: PS: if it makes you feel any better when I was diagnosed my CD4 was 15 and there was still a 3 month wait until I began meds.

Offline tommylance

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #2 on: November 29, 2012, 11:56:33 am »
Ah, okay. That's fine I'll just see what the next bloods say then.

I guess CD4 202 isn't that disastrous then - I just felt like I was walking around with zero defense and liable to catch literally anything that came my way.

Thanks, Hellraiser :)

Offline mecch

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #3 on: November 29, 2012, 11:58:27 am »
Welcome here.
Sorry for you diagnosis.

Starting medicine: different criteria

1) You need to be psychologically ready
2) You need to have the financing in order
3) Your doctor + labs suggest its time to start.
4) You want to start.

So its not JUST about the CD4 and viral load.  But of course sometimes that is critical and someone has no choice but to start.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Hellraiser

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #4 on: November 29, 2012, 02:16:28 pm »
Ah, okay. That's fine I'll just see what the next bloods say then.

I guess CD4 202 isn't that disastrous then - I just felt like I was walking around with zero defense and liable to catch literally anything that came my way.

Thanks, Hellraiser :)

You're quite welcome if you have any questions like this these boards are a great resource.  We literally see the same questions asked over and over again.  So this is pretty typical stuff.  With a CD4 count of 202 you're fine.  The biggest part of the battle is not having any Opportunistic Infections.  Since you don't currently have any hopefully you should be just fine.

Offline newt

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #5 on: November 29, 2012, 05:59:25 pm »
I disagree with your doc, 6 months on from seroconversion your CD4 should have balanced out if your body was dealing with the virus well, I personally would be considering meds. Or at least expecting to consider them after another CD4 count. A wait for a few weeks to get another CD4 count won't hurt.

- matt
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #6 on: November 29, 2012, 06:11:45 pm »
If your doctor had a lab report proving you were HIV-negative showing a recent infection he/she might have a point. But just a vague sense of seroconversion which could have been something else doesn't prove a recent infection. So, like Matt/newt, I disagree with your doctor though for a different reason (somewhat), though he is correct that your numbers would have balanced out. "almost 100% sure I was infected in May" isn't 100% sure unless you have that negative result.

I would go on medication right away (unless I am mistaken and you do in fact have proof of a negative result recently).
"I’ve slept with enough men to know that I’m not gay"

Offline WindySkies

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #7 on: November 29, 2012, 09:06:18 pm »
I started about 3 weeks after diagnosis, but I could have started about a week after based on the prescription.

My current doctor put it best: What other major infection, especially one that can be terminal, is it not recommended to start medical treatment right away?

Basically if you get cancer, diabetes, pneumonia etc, you start treating it right away to fight it.

Kind of made simple sense to me.
10/11/2012 Journey Started
10/17/2012 First Labs: VL=57,645  CD4+=730  37%
10/31/2012 Started Complera
11/30/2012 Labs: VL=80  CD4+=929 40%
12/24/2012 Started Stribild

Undetectable since 1/15/13 CD4+= Over 1,400 and 49%

Offline Hellraiser

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #8 on: November 29, 2012, 09:20:42 pm »
The doctor isn't advising him not to start meds ever, and he isn't afraid to start.  Simply stated the doctor most likely wants to see a second set of numbers before she makes a determination.  Did the doctor schedule a second blood draw within the month?

Offline mecch

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #9 on: November 29, 2012, 10:35:59 pm »
I started about 3 weeks after diagnosis, but I could have started about a week after based on the prescription.

My current doctor put it best: What other major infection, especially one that can be terminal, is it not recommended to start medical treatment right away?

Basically if you get cancer, diabetes, pneumonia etc, you start treating it right away to fight it.

Kind of made simple sense to me.

This is the new thinking.
You do realize that treatment is not offerred at will, whenever, in every country?
Also, there is not much evidence yet that treatment on diagnosis is a better method than treatment when a recommended need is met, based on disease progress.  You do realize that?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Miss Philicia

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #10 on: November 30, 2012, 05:49:24 pm »

My current doctor put it best: What other major infection, especially one that can be terminal, is it not recommended to start medical treatment right away?

Hopefully he wasn't making the same recommendations a decade ago when patients were turning up left and right with lipoatrophy, among other oddities.
"I’ve slept with enough men to know that I’m not gay"

Offline eric48

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #11 on: December 01, 2012, 06:08:15 pm »
Hi,

Discussions with my own (long timer) Doc are always very intense and without detour.

as a side topics of our last heated debate on things, he leaked out that, given modern meds and their results, he does not give in the possible (very rare) chance that someone might be an Elite controller and his views have very sharply changed from 'wait until treatment is needed' to 'treat as soon as confirmed poz' (may be not even waiting for the confirmation)

In his views, even a 24h delay is a waste.

Anyone who has just learned the bad news goes into a wealth of conflicting views. I can sympathize with that.

Yet, early detection is a blessing. (so to speak...)

While 'test and treat' may seem a burden to the younger generation, all signs (with currently used meds) are positively showing that earlier entry into treatment is preferred.

Initiating treatment is a journey of sorts. It comes with worries and all sorts of negative feelings.

May take 2-3 years to get things settled out.

With modern meds there is NOT a single valid reason NOT to start medication (if they are available) ASAP

I don't even support the idea 'wait until you are ready'

Why? because opting-out later down the road is always an option.
If you later find out you were not psychologically ready for it , you can always exert your free will by opting out.

Earlier into treatment means better treatment progress and better chance for a hassle free life

Whatever you decide, the next few months are not going to be a piece of cake, but, as time goes, things will become easier for HIVers.

Hope this helps

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline newt

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #12 on: December 03, 2012, 01:00:32 pm »
Quote
With modern meds there is NOT a single valid reason NOT to start medication

Erm, except perhaps it is arguable that no major reduction in risk of illness or death has been conclusively shown for HIV treatment with a CD4 count over 350/500, so waiting might be perfectly valid? Even in the US treatment over a CD4 count of 500 is contested by many, even if in the end the guidelines did not reflect this (it was in the draft).

I agree, given various sorts of evidence from research it is a fair call to start immediately, but also to my mind a fair call to wait. I was last year on the strong side of start early but now I am unsure which way to call treatment at CD4 counts over 350/500.

And adverse events, hmm, they may be serious and worse with early treatment, we don't know precisely but have some watch points on both sides of the argument, benefits and disbenefits eg see here: http://i-base.info/htb/20331.

In any case, all this is beside the point if the OP's CD4 count is confirmed as under 350/500. Treatment would be indicated whether HIV arrived last year or in the last century.

- matt
"The object is to be a well patient, not a good patient"

Offline spacebarsux

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #13 on: December 04, 2012, 03:56:27 am »
Erm, except perhaps it is arguable that no major reduction in risk of illness or death has been conclusively shown for HIV treatment with a CD4 count over 350/500, so waiting might be perfectly valid? Even in the US treatment over a CD4 count of 500 is contested by many, even if in the end the guidelines did not reflect this (it was in the draft).

I agree, given various sorts of evidence from research it is a fair call to start immediately, but also to my mind a fair call to wait. I was last year on the strong side of start early but now I am unsure which way to call treatment at CD4 counts over 350/500.

And adverse events, hmm, they may be serious and worse with early treatment, we don't know precisely but have some watch points on both sides of the argument, benefits and disbenefits eg see here: http://i-base.info/htb/20331.


Thank you Matt for reiterating this. Also thanks for the link.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline tommylance

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #14 on: December 04, 2012, 01:09:00 pm »
Thanks for the feedback guys.

From what you have said, a few weeks more before starting isn't going to have a great impact either way.

My doctor basically left it up to me whether I started straight away, but recommended that I wait for one more set of bloods incase there was a naturally occurring upward trend.

Lastly, I have just one more question. For those of you who have had your diagnosis for a number of years - do you find yourselves becoming ill often? I know it's a totally vague question, but if I adhere to medication etc. am i likely to be able to live relatively normally without being in and out of the doctors all the time for various ailments. It's probably a very hard question to answer.

Offline Hellraiser

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #15 on: December 04, 2012, 02:57:57 pm »
No. At one point I had truly terrible numbers and one of the most noticeable trends I saw was that the HIV- people around got sick a lot more frequently than I did.

Offline eric48

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Re: Doctor Advising Against Meds - Low CD4 Count
« Reply #16 on: December 05, 2012, 03:15:16 pm »
In any case, the guideliness (at least US and Europe) call for a resistance test upon first evidence (confirmation) of infection. this test takes 3 weeks to 1 month.

Opinions about starting treatment earlier depend on a number of factors:
- if you are looking at desease non-progression only, then a small delay may not matter (unless CD4 is low to very low)
- if you are looking at best possible recovery, in other words treatment progress, then there seems to be a difference in people starting treatment within one year after infection and people starting later. Whether this makes a significant clinical difference is debatable

While most people respond well to treatment, one can not under estimate that there is a (limited) number of people who experience treatment failure (either virologic, in which case a regiment switch usually resolves the situation, or, immunologic failure, in which case docs have no clue)

If you are responding well to treatment, you can expect a life-as-usual course.
I (being older) had a more or less rough time with initiatiating the meds but not nearly as bad as I had thought. Never been sick, never missed a day at work but the first few months have had their up and downs

hope this helps eric

 
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

 


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