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Author Topic: Labwork results today, a tad dissappointing.  (Read 4687 times)

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Offline skeebo1969

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Labwork results today, a tad dissappointing.
« on: November 17, 2017, 06:34:12 pm »


   It looks like Genvoya is a no go for me.  After about 10 years of a Cd4 range of 800-1100, today's results: Cd4 325 viral load undetectable.  This is the fourth set of labs showing a constant decrease in each one.

   I am not upset about it.   My insurance won't cover a genotype test due to no problems remaining undetectable the whole time, which I am a little miffed about.  However, I know there is not much I can do about it.

   My doctor thinks the problem lies in the absence of a nuke in my regimen.  We are switching to odefsey and hopefully this will solve my issue.  My wife is also experiencing the same issue.  She's going back to our old regimen of Truvada and Viramune.  I can't take Viramune like she can due to it causing me intestinal issues for some strange reason.

  On a good note, my cholesterol was outstanding 173.  Not bad for a dude that eats whatever he wants.

  Thomas
I despise the song Love is in the Air, you should too.

Offline bmancanfly

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Re: Labwork results today, a tad dissappointing.
« Reply #1 on: November 17, 2017, 07:36:31 pm »
Hey Skeebo, sorry about the less than stellar lab results.  The most important thing is remaining UD, as you know. 

Did you mean the absence of a NON nuke, because Genvoya has two nukes.

I'm still taking Viramune and Truvada for well over a decade now.  It's still that best drug combo for me.  Zero side effects and always UD.  I've tried some of the newer stuff but nothing else seems to work as well as the old tried and true.

I hope the switch works out for you - maybe the NNRTI's are best for you. 

Good to see an old timer posting  ;)
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #2 on: November 17, 2017, 09:01:54 pm »


    You're right, a NNRTI is what I should be taking.

     I was on Truvada and Viramune for about 10 years myself, and it worked great.  Then about a year ago my divirticulosis issue kept reoccuring.  My doctor advised it was a known issue with Viramune in some people. 

     The switch didn't help that (divirt) either.  I told my doctor today that I just couldn't stomach taking Cipro anymore for it, so she switched me to Flagyl.  I haven't had a bowel movement in 6 days, fun times.   

      If Odesfy doesn't get my CD4's moving in the right direction I'll probablyswitch back to Viramune and Truvada.

      I probably should have just did that now, but I always like to do stuff the hard way. (joking)

      It's good seeing you around bman.   We shared many nights here on the forums and seeing an old member doing good is always a welcome sight.

     (((hugs)))

      Thomas
I despise the song Love is in the Air, you should too.

Offline Tonny2

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Re: Labwork results today, a tad dissappointing.
« Reply #3 on: November 17, 2017, 09:12:37 pm »

        ojo      hello skeebo...i'm also sorry about your results, i know how frustrating this is,,,i'm taking, prezista/norvir, intelence and isentress, and for some one who started this treatment with only 36 cd4, and after almost eleven years of taking the same combo, my latest blood work results show a cd4=737 and a cd4% of 32 it is incredible, last two years my cd4 have been between 600-700...this is a treatment that was offered to me in january 2007 as a "salvage treatment". for peop;e wiith resistance to all kind if meds back then...as a LTS, may be is something you two want to talk to your doctor...the good thing is that you are remainig UD...best of luck for both of you...hugs                                                                                         ojo

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #4 on: November 17, 2017, 09:39:56 pm »
        ojo      hello skeebo...i'm also sorry about your results, i know how frustrating this is,,,i'm taking, prezista/norvir, intelence and isentress, and for some one who started this treatment with only 36 cd4, and after almost eleven years of taking the same combo, my latest blood work results show a cd4=737 and a cd4% of 32 it is incredible, last two years my cd4 have been between 600-700...this is a treatment that was offered to me in january 2007 as a "salvage treatment". for peop;e wiith resistance to all kind if meds back then...as a LTS, may be is something you two want to talk to your doctor...the good thing is that you are remainig UD...best of luck for both of you...hugs                                                                                         ojo

Hi Tonny, thanks for the response.  When I originally switched Isentress was discussed.    It's incredible the number of options we have today.  My wife is LTS, but I am kind of a baby in the HIV history line. Going 13 years strong.. well sorta  ;)  Thanks for the response and hugs right back at ya!

Thomas
I despise the song Love is in the Air, you should too.

Offline Grasshopper

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Re: Labwork results today, a tad dissappointing.
« Reply #5 on: November 18, 2017, 07:00:19 am »
I don't understand the need for a genotype : you have no persistant viraemia, you are undetectable. Antiretrovial medication (Genvoya) is only to maximally suppress the HIV virus from replicating, and NOT to stimulate CD4 growth.

Are there NO other underlying issue(s) causing the drop in CD4 cells ??

Offline leatherman

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Re: Labwork results today, a tad dissappointing.
« Reply #6 on: November 18, 2017, 07:30:20 am »
My insurance won't cover a genotype test due to no problems remaining undetectable the whole time, which I am a little miffed about.  However, I know there is not much I can do about it.
grasshopper is right. You need to have a viral load of at least 1000 to do a genotype test. Without a viral load, with which to test to find the resistance, a genotype cannot determine anything, and that's why your insurance won't pay for this test at this time.

I should point out though that there is an expensive genotype test (developed in 2014) that can be done with low or UD viral loads; but a patient would need to have other recent health issues to warrant the expense of this test.

HIV meds do nothing for a cd4 count but reduce HIV which should allow your cd4s to not be co-opted by HIV, and therefore the cd4 amount to rise. ARTs really don't do anything towards cd4 counts; nor are there any meds to increase cd4 count. Your doctor needs to look for another reason in the cd4 drop than the meds

also, take a look at your lastest few tests, and check out the cd4%. has this stayed stable or fallen?
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Wade

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Re: Labwork results today, a tad dissappointing.
« Reply #7 on: November 18, 2017, 07:48:03 am »
Hey Thomas, That is odd and there seems to be no rhyme or reason, but then again it's been that way from the beginning. 

It still sucks, I hate med changes an I feel for you bud.

It has been the opposite for me, my cd4s were never out of the 350 range for 25 years and are now over 550 since switching to Genvoya and increase with each set of labs. Who the fuck knows  ::)

Anyway good luck with the switch and hope it all comes back together.

Wade

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Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #8 on: November 18, 2017, 08:00:36 am »

    Interesting, yet worrisome. 

    Is it just coicedental that my wife's experience is the same?  Hers is not such a drastic drop as mine but the baseline average has fallen in the last 1 1/2 years for her as well.

     My doctor commented that the only part of Genvoya that was probably working for me was the Truvada component

    Do you think the constant bouts with divirticulitis could have something to do with it?  It's put me in the hospital twice during that time. 

    I'm going to do another set of labs in 3 months to see how things are working with Odesfy.  I did have a genotype test done years ago, and for the life of me can't remember which class of drugs but I do recall him saying Combivir was not an option for me.

    Thomas
I despise the song Love is in the Air, you should too.

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #9 on: November 18, 2017, 08:02:33 am »


    I think the genotype test I had was done in 2005 after my initial diagnosis.
I despise the song Love is in the Air, you should too.

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #10 on: November 18, 2017, 08:13:52 am »
HIV meds do nothing for a cd4 count but reduce HIV which should allow your cd4s to not be co-opted by HIV, and therefore the cd4 amount to rise. ARTs really don't do anything towards cd4 counts; nor are there any meds to increase cd4 count. Your doctor needs to look for another reason in the cd4 drop than the meds



That's oddly strange then.  When my wife and I met she was on Zerit and Viread for about 6 years.  During that time she said her Cd4's ranged in the 300 to 500 range.  However, when she switched to the Truvada and Viramune combo in time her average was anywhere between 900-1200.

Not arguing your point, just kind of curious about it. 
« Last Edit: November 18, 2017, 08:16:09 am by skeebo1969 »
I despise the song Love is in the Air, you should too.

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #11 on: November 18, 2017, 08:31:07 am »
Hey Thomas, That is odd and there seems to be no rhyme or reason, but then again it's been that way from the beginning. 

It still sucks, I hate med changes an I feel for you bud.

It has been the opposite for me, my cd4s were never out of the 350 range for 25 years and are now over 550 since switching to Genvoya and increase with each set of labs. Who the fuck knows  ::)

Anyway good luck with the switch and hope it all comes back together.

Wade

Hi Wade, if I ever wrote a book on my life it would be titled "Who the fuck knows".  My coworkers would probably want it to be called "Batshit Crazy" though.

I appreciate you and hope all is well on your side. :)

(((hugs)))

Thomas

I despise the song Love is in the Air, you should too.

Offline Wade

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Re: Labwork results today, a tad dissappointing.
« Reply #12 on: November 18, 2017, 08:39:24 am »
I haven't had a resistance test in so long I can't remember when it was done, but I do know the Non nukes didn't play well with me especially Sustiva and viramune.
I think I am resistant to the entire class.

My partner was on Viramune for years and his cd4s soared over 900 very quickly.
He has since switched and is still doing well. For those who tolerate it seems to be a silver bullet

Why did your doc switch you when you were both doing so well ?
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline Wade

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Re: Labwork results today, a tad dissappointing.
« Reply #13 on: November 18, 2017, 08:43:42 am »
Hi Wade, if I ever wrote a book on my life it would be titled "Who the fuck knows".  My coworkers would probably want it to be called "Batshit Crazy" though.

I appreciate you and hope all is well on your side. :)

(((hugs)))

Thomas

Who the fuck knows comes out of my mouth at least 10 times a day... ;D
If I were on TV half my conversation would be bleeped out.
The only thing worse than my language is my spelling  ::)

Hugs back atcha Thomas  :)
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #14 on: November 18, 2017, 08:47:07 am »

Why did your doc switch you when you were both doing so well ?

We suspected Viramune was either causing the divirticulitus or in the least, exasperating the situation.  Evidently, unbeknowest to me, it is known to be a culprit in some people suffering with the condition.

Thomas
I despise the song Love is in the Air, you should too.

Offline bocker3

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Re: Labwork results today, a tad dissappointing.
« Reply #15 on: November 18, 2017, 10:11:09 am »
While the HIV meds don't directly impact CD4 levels, as others have pointed out, they directly impact HIV replication, there is always the possibility that it could be INDIRECTLY impacting your CD4 levels due to some side effect. 

Everyone is different and if the empirical data suggests a med change to your doctor (and assuming you trust your doc's judgement) than it could be a reasonable course of action.

If you haven't had any adherence issues and/or periods of significant viremia since your resistance test in 2005, I would not expect to see any real changes there -- of course, there are new drugs today that would not have been looked at back then, so there is THAT.  My virus came with resistance to nearly all Nukes, which is why I take a boosted PI (Reyataz), a non-nuke (Sustiva) and 2 nukes (Descovy), so I get the worry of resistance!!

Did your trend of decreasing CD4's coincide with your recent diverticulitis issues?  That may be the culprit there if so......  (though, I'm not a doctor, have not played one on TV, nor stayed at a Holiday Inn Express last night.....)

Hope you get it all sorted out!!  Of course, the UD is the most important thing in your HIV care.

Mike

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #16 on: November 18, 2017, 01:16:00 pm »


Did your trend of decreasing CD4's coincide with your recent diverticulitis issues? 

Hi Mike!

I would have to answer yes.  I have had about 6 occurances in the last 2 years, two of those serious.  It use to only reside in my small intestines in two different spots.  The last CT scan indicated I have a spot in my colon now as well.  I also had a staph infection in the shin part of my leg about a year ago that was quite stubborn to get rid of.....

Btw, it's good seeing you around.  I hope all is good on your side.

Thomas
I despise the song Love is in the Air, you should too.

Offline bocker3

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Re: Labwork results today, a tad dissappointing.
« Reply #17 on: November 18, 2017, 05:41:09 pm »
Thomas,

All is well here -- thanks for asking.  Always good to see you around too...  Perhaps someday we will get to meet in person!!

At any rate -- if it were me (and it's NOT, but still....) - I'd be more focused on the diverticulitis than the lower (but still sufficient) CD4 level -- as you are remaining UD, so you aren't losing CD4's to the virus!!!

Now -- one thing that may have exacerbated your GI issues is the "new" HIV drug, so, again, changing it may not be the wrong thing.  However, you'd be changing it to see if your GI symptoms get better -- not to, directly, raise CD4's.  The question still lingers -- what if it's not the drug, but something else causing your GI issues (sorry, "GI issues" is easier to type than diverticulitis.... not minimizing - I know that conditions SUCKS big time).

Honestly, the one "concern" I have is when you said your doc thought your CD4's were trending down because you weren't on a non-nuke.  There isn't any science that I am aware of that would make that seem so -- did he indicate any other possible culprits??  Is he the same doc working on the GI issue or more you HIV doc alone?

Hugs,
Mike

Offline skeebo1969

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Re: Labwork results today, a tad dissappointing.
« Reply #18 on: November 19, 2017, 07:38:22 am »
Thomas,

All is well here -- thanks for asking.  Always good to see you around too...  Perhaps someday we will get to meet in person!!

At any rate -- if it were me (and it's NOT, but still....) - I'd be more focused on the diverticulitis than the lower (but still sufficient) CD4 level -- as you are remaining UD, so you aren't losing CD4's to the virus!!!

Now -- one thing that may have exacerbated your GI issues is the "new" HIV drug, so, again, changing it may not be the wrong thing.  However, you'd be changing it to see if your GI symptoms get better -- not to, directly, raise CD4's.  The question still lingers -- what if it's not the drug, but something else causing your GI issues (sorry, "GI issues" is easier to type than diverticulitis.... not minimizing - I know that conditions SUCKS big time).

Honestly, the one "concern" I have is when you said your doc thought your CD4's were trending down because you weren't on a non-nuke.  There isn't any science that I am aware of that would make that seem so -- did he indicate any other possible culprits??  Is he the same doc working on the GI issue or more you HIV doc alone?

Hugs,
Mike

Mike,

I think a lot of my doctors thoughts on this stems from what worked well for me in the past, and what didn't.  Additionally, we both (wife and I) each have a trending downward result since being on Genvoya.   Mine being a lot more drastic, and my wife's being a little more of a slow progression.   Her labs are repeatedly showing an average range of 700 over the course of the last 4 labworks (Genvoya).  This is even much lower for her, compared to the last 10 years of lab results.

We both (wifey and I) have pretty much, with the exception of our first two years together, took the same medicine.  I think if I was a stand alone patient, it probably would have been approached differently.  Then on the otherhand, I know two people cannot compose empirical data that is concrete.

The GI issue has plagued me since I was 30, long before HIV.   Sometimes there's seemingly was no reason for an attack.... too many pistachios, a couple beers, tomato sauce.... this list can go on and on.  However, I have not had any issues with it for about 8 years before this marathon of episodes I have had for the last three years.  It's extremely frustrating. 

I know my thoughts here are all over the place, but in a nutshell : we are linking the GI issues to Viramune, and dropping Cd4's to Genvoya (my wife's experience added in).

In the past my diverticulitis was in one region of my intestines.  One little problem area, and I always knew when an attack was coming on because it hurt in the same spot every time(right under my belly button).  Now it's in my Colon and another part of my small intestines.  Pain in my lower back and my left side are the new indicators of a flare up.

Mike, I bet a shipment of live Maine lobster would fix all this. ::)  If you and yours (I remember his name) ever get down this way hit us up and I'll do the same if we are ever up that way again.  We talk about going on an eastern seaboard roadtrip all the time...



Thomas
« Last Edit: November 19, 2017, 07:40:46 am by skeebo1969 »
I despise the song Love is in the Air, you should too.

 


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