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Author Topic: Concerned about blood tests  (Read 4062 times)

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Offline jackfrost

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Concerned about blood tests
« on: August 23, 2012, 03:28:38 PM »
I have been on my new combination of meds for a month now - Truvada, Norvir, and Reyataz. The only side effect I have had is diarrhea which I know is common with the Norvir.

Last Friday August 17th I had blood work done to make sure my viral load is still undetectable and make sure everything else is okay.

On Tuesday I had a voicemail from my endocrinologist, she had a copy of my blood work my HIV doc had done and said she was concerned and wanted to make sure I was following up with my HIV doc and that she would like me to follow up with her as well. Nice voicemail to get, freaked me out. I would have preferred if she said, can you give me a call please.

I called my HIV doctor's office the next day and spoke to the nurse, she pulled my results and said my liver enzymes were high, my electrolytes were out of whack and something else I can't remember. I already have an appointment scheduled for this Monday August 27th, I asked her is it serious? Should I be coming in sooner or can this wait till my appointment on the 27th? She said it's up to you. I said, I don't have the blood test results, again is this something I should see the doctor about immediately or can it wait till the 27th? She said well the doctor doesn't have any appointments available but he said if your having serious side effects he could squeeze you in on Thursday. She then asked me if my eyes have been yellow. I said no they haven't, the only side effect I've had is diarrhea. She said okay then it's up to you if you want to come in sooner. I said well it doesn't sound too serious I will wait till Monday then. Needless to say I was frustrated, I'm not the doctor, I don't know if I should be coming in right away based on the test results.

Is it common for liver enzymes to be high when starting this combo? Will they go back down?

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #1 on: August 23, 2012, 04:56:16 PM »
Hi there,

I started meds for the first time 6 weeks ago (was dxd in May) and am taking the same combo as you.....For the first few weeks, my eyes were VERY yellow, and my skin was jaundicing regularly also, so my doc checked my liver enzymes every week for the first 3 weeks.  The liver enzymes did go down to a more normal range, but the bilirubin levels are still high, and my eyes are still yellow.  This is mainly the only side effect remaining, but as a teacher it's a little embarrassing when student's keep asking why my eyes are yellow...so far no parents or other teachers have asked yet (but I'm sure they've noticed). 

I'm meeting with my doc on the 29th and I might ask him if I can switch to something else....

If the bilirubin levels are the only thing that's high, I was told it's not harmful (just annoying)...unfortunately you won't know until you meet with your doc.   Best of luck!

Offline Rockin

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Re: Concerned about blood tests
« Reply #2 on: August 23, 2012, 07:36:42 PM »
Hi there,

I started meds for the first time 6 weeks ago (was dxd in May) and am taking the same combo as you.....For the first few weeks, my eyes were VERY yellow, and my skin was jaundicing regularly also, so my doc checked my liver enzymes every week for the first 3 weeks.  The liver enzymes did go down to a more normal range, but the bilirubin levels are still high, and my eyes are still yellow.  This is mainly the only side effect remaining, but as a teacher it's a little embarrassing when student's keep asking why my eyes are yellow...so far no parents or other teachers have asked yet (but I'm sure they've noticed). 

I'm meeting with my doc on the 29th and I might ask him if I can switch to something else....

If the bilirubin levels are the only thing that's high, I was told it's not harmful (just annoying)...unfortunately you won't know until you meet with your doc.   Best of luck!

I was on the same combo for 1 year since last year. My billurubin levels never went back to normal and my eyes were constantly yellow. Since I became UND a few months ago, my doctor said we could discuss changing meds so he switched Atazanavir (the generic equivalent of Reyataz) for Fozamprenavir. My eyes are white again and I'm not feeling any side effects so far. Talk to your doctor about it.

PS: I never had diarrhea on this combo. I only have this type of problems these days after a night of heavy drinking.

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #3 on: August 24, 2012, 06:29:31 AM »
I was on the same combo for 1 year since last year. My billurubin levels never went back to normal and my eyes were constantly yellow. Since I became UND a few months ago, my doctor said we could discuss changing meds so he switched Atazanavir (the generic equivalent of Reyataz) for Fozamprenavir. My eyes are white again and I'm not feeling any side effects so far. Talk to your doctor about it.


Thanks for the tip...I feel silly for asking to switch over something so 'shallow'...but it really makes me self conscious, and I can't afford to be that way at work.    ;)

Offline Rockin

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Re: Concerned about blood tests
« Reply #4 on: August 24, 2012, 11:43:27 AM »
Thanks for the tip...I feel silly for asking to switch over something so 'shallow'...but it really makes me self conscious, and I can't afford to be that way at work.    ;)

Its not that shallow, especially in a professional environment. I had a friend once asking me if I had tested myself for Hepatitis, because of the yellowness.

Bear in mind, though, that you will be switching one pill (Reyataz) for two (Fozamprenavir).

Offline newt

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Re: Concerned about blood tests
« Reply #5 on: August 24, 2012, 12:09:52 PM »
This is the reason I changed to darunavir. It's not shallow.

On the lab tests, a retest is important cos one-off duff results happen. The important one here is electrolytes.

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

Offline leatherman

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Re: Concerned about blood tests
« Reply #6 on: August 24, 2012, 12:48:55 PM »
I'm meeting with my doc on the 29th and I might ask him if I can switch to something else...
if the yellowness in your eyes is diminishing (you say they were VERY yellow and now just yellow) couldn't you wait a little longer to see if this issue will clear up completely? Six weeks is really not all that long of a time period to get adjusted with a new body chemistry of less HIV and increased med levels. Many people on Sustiva/Atripla have gone 2-3 months before the dizziness/dreaming/cognitive issues have cleared up.

Can you not just brush off the comments about the yellowish-eyes a bit longer as a "temporary adverse reaction to a medication"? It's not like people will "know" this has to do with HIV and HIV meds - unless you tell them that.

I only put this out there because recently in another thread there was talk about people changing meds frequently. I questioned how much that was really happening and for what reasons. If your meds are working well and that side effect is diminishing, it seems it would be more prudent to wait it out until that minor side effect was gone than to switch to another regimen - which holds no guarantee of being as effective and could possibly bring up a whole new adjustment time and set of side effects to deal with.

just putting this out there as some more food for thought. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jackfrost

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Re: Concerned about blood tests
« Reply #7 on: August 24, 2012, 04:31:58 PM »
Thanks for sharing your experiences on this combo.

I have my appointment on Monday with my HIV doc so I will find out exactly what the liver enzymes are at. I haven't had any jaundice thankfully and my sleeping is WAY better since I stopped Atripla. I do not miss Atripla at all, I had been on it for just over a year and as time went on the cognitive side effects got worse not better for me. I finally sleep through the night most of the time.

Newt - you said the important one is the electorlytes, how come?

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #8 on: August 24, 2012, 06:57:16 PM »
if the yellowness in your eyes is diminishing (you say they were VERY yellow and now just yellow) couldn't you wait a little longer to see if this issue will clear up completely? Six weeks is really not all that long of a time period to get adjusted with a new body chemistry of less HIV and increased med levels. Many people on Sustiva/Atripla have gone 2-3 months before the dizziness/dreaming/cognitive issues have cleared up.

Can you not just brush off the comments about the yellowish-eyes a bit longer as a "temporary adverse reaction to a medication"? It's not like people will "know" this has to do with HIV and HIV meds - unless you tell them that.

just putting this out there as some more food for thought. ;)

Thanks for the thoughts....they were VERY yellow for a couple of weeks, but for the past four they have stayed exactly the same--regular yellow ....my partner is on the same meds and his eyes are as white as could be after the second week....I'll definitely ask my doc and take whatever advice he has...he is the expert, not me...I just thought that since initially I was the one who chose this combo (I had a few options since I don't have any resistance issues) that it wouldn't be a big deal to change it up...so I'll see what he thinks about switching or if I should wait longer....if he thinks I need to wait...I'll tough it out.....and just keep wearing sunglasses everywhere I go (even if I look like a douchebag from 'Jersey Shore'.   LOL)

Offline leatherman

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Re: Concerned about blood tests
« Reply #9 on: August 24, 2012, 11:14:58 PM »
and just keep wearing sunglasses everywhere I go (even if I look like a douchebag from 'Jersey Shore'.   LOL)
as a courier up in Ohio, I wore sunglasses constantly, protecting my eyes from the snow glare (and hiding the redness in my eyes from smoking weed LOL). In SC I wear sunglasses all the time because it's freaking hot and bright all the damn time. I've always viewed sunglasses as protective gear not douche-baggery  ;) ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline tednlou2

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Re: Concerned about blood tests
« Reply #10 on: August 24, 2012, 11:19:47 PM »
I realize this site is a very, very small sample of people.  However, it seems more here have experienced the yellowing than what the stats would suggest.  Of course, all those who don't experience yellowing don't mention it.  Don't they say less than 5% experience yellowing?

 

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #11 on: August 25, 2012, 11:02:47 AM »
as a courier up in Ohio, I wore sunglasses constantly, protecting my eyes from the snow glare (and hiding the redness in my eyes from smoking weed LOL). In SC I wear sunglasses all the time because it's freaking hot and bright all the damn time. I've always viewed sunglasses as protective gear not douche-baggery  ;) ;D

I was really just kidding about the douchebag part...or maybe I just watch too much MTV   ;D...though I do find myself wearing sunglasses even when it's not sunny......I'm super self-conscious about my yellow eyes...probably more so than I should be....but whatever.    8)

Offline jackfrost

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Re: Concerned about blood tests
« Reply #12 on: August 28, 2012, 12:04:15 AM »
Had my appointment with the HIV doctor today. He said my phosphorus levels are through the roof and that they are concerned about it. He asked me if I drank the night before my blood tests, I told him I haven't had any alcohol since May. He said damn the one time I hoped you forgot not to drink the day before, so I would have an easy explanation - made me laugh. They drew more blood and they will call me if the phosphorus is still out of whack.

Offline tednlou2

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Re: Concerned about blood tests
« Reply #13 on: August 28, 2012, 12:44:32 AM »
Had my appointment with the HIV doctor today. He said my phosphorus levels are through the roof and that they are concerned about it. He asked me if I drank the night before my blood tests, I told him I haven't had any alcohol since May. He said damn the one time I hoped you forgot not to drink the day before, so I would have an easy explanation - made me laugh. They drew more blood and they will call me if the phosphorus is still out of whack.

I've always thought high levels usually only occur in kidney dysfunction.  How's your kidney health? 

Offline Solo_LTSurvivor

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Re: Concerned about blood tests
« Reply #14 on: August 28, 2012, 12:56:36 PM »
if the yellowness in your eyes is diminishing (you say they were VERY yellow and now just yellow) couldn't you wait a little longer to see if this issue will clear up completely? Six weeks is really not all that long of a time period to get adjusted with a new body chemistry of less HIV and increased med levels. Many people on Sustiva/Atripla have gone 2-3 months before the dizziness/dreaming/cognitive issues have cleared up.

Can you not just brush off the comments about the yellowish-eyes a bit longer as a "temporary adverse reaction to a medication"? It's not like people will "know" this has to do with HIV and HIV meds - unless you tell them that.

I only put this out there because recently in another thread there was talk about people changing meds frequently. I questioned how much that was really happening and for what reasons. If your meds are working well and that side effect is diminishing, it seems it would be more prudent to wait it out until that minor side effect was gone than to switch to another regimen - which holds no guarantee of being as effective and could possibly bring up a whole new adjustment time and set of side effects to deal with.

just putting this out there as some more food for thought. ;)

Well at least you tried to bring a bit of rationality into the conversation... but we know some people are already dead set otherwise.

I actually have an appointment in two days to meet with my ID doc...I'm curious to hear what his thoughts are on this drug.   Thanks for sharing the link.    ;D
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline newt

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Re: Concerned about blood tests
« Reply #15 on: August 28, 2012, 04:38:38 PM »
@jackfrost - The important thing here is not the yellowing, it's the phophates, and your docs are right to sit all over this. It might indicate an acute bad reaction to tenofovir in Truvada and/or Reyataz, or indeed both in combination, in which case you're heading for a change of meds and the yellowing and phosphate issues will resolve. Or an undiscovered underlying condition that has come to light by the extra monitoring people with HIV get (perhaps triggered by the effect of your combination on your kidneys), in which case an appropriate action can be taken and hopefully the issue will resolve. Or it might be nothing, eg a duff test, and go away. I am glad your docs are all over the phsophate imbalance.

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

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #16 on: August 28, 2012, 05:47:26 PM »
Well at least you tried to bring a bit of rationality into the conversation... but we know some people are already dead set otherwise.

Seriously?  What's so irrational about asking your Dr. a question?        ::)
« Last Edit: August 28, 2012, 06:59:20 PM by jimbalaya »

Offline Solo_LTSurvivor

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Re: Concerned about blood tests
« Reply #17 on: August 28, 2012, 07:50:57 PM »
Seriously?  What's so irrational about asking your Dr. a question?        ::)

You were the one who stated that you couldn't deal with having jaundiced eyes on numerous occasions after being on your first regimen EVER for only six weeks so it was apparent that you would look for any reason to switch. 

Maybe you should be grateful those those who dealt with having to take AZT every four hours and its horrible side effects to pave the way for the easier regimens that people like you have access to instead of thinking that you have it so bad after such a short time and not even giving it a go to see if the terrible side effect will resolve itself.  Heaven help you if you had to deal with being chained to your house for fear you'd shit yourself  ::)
« Last Edit: August 28, 2012, 07:52:37 PM by Solo_LTSurvivor »
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #18 on: August 28, 2012, 08:13:25 PM »
You were the one who stated that you couldn't deal with having jaundiced eyes on numerous occasions after being on your first regimen EVER for only six weeks so it was apparent that you would look for any reason to switch. 

Maybe you should be grateful those those who dealt with having to take AZT every four hours and its horrible side effects to pave the way for the easier regimens that people like you have access to instead of thinking that you have it so bad after such a short time and not even giving it a go to see if the terrible side effect will resolve itself.  Heaven help you if you had to deal with being chained to your house for fear you'd shit yourself  ::)

First of all, my favorite Uncle was diagnosed positive back in the mid 80's, and died just last summer of AIDS related pneumonia, so I saw first hand what he went through from the time I was in my early teens until my late 30's while taking all sorts of different combinations and watching him deal with those side effects, so I am very grateful for modern medicine.  Never said I wasn't.

Second of all, everything I've heard first-hand from people who've been on Reyataz (from my support group) and read online said that the yellowing of the eyes should go away within 1-2 weeks (which is what happened to my partner) and if it doesn't go away there's a chance it might not.  For the last four weeks there has been no change at all.  After week 2 they got slightly less yellow, but then stayed exactly the same since.

Third, I said that I would ask my Dr. his advice and follow it.  If he says to stick it out, I clearly said above that I would suck it up and deal with yellow eyes, because I know that it is a 'shallow' concern.   With that being said, I am a teacher who is surrounded by hundreds of kids a day, fellow teachers, parents, etc. and the yellow eyes have made me very self-conscious.  I find myself avoiding eye contact with people, avoiding social gatherings, etc.  I don't find it irrational at all to ask my doctor what his thoughts are on the matter. 

Finally, as far as quoting my comment from another thread, I said I was interested in hearing my Dr.'s thoughts on the quad pill.  That's all.  I wanted to know what he thought of it.  I am not even able to take it from what I understand because it was approved for treatment naive patients only.  I'm mearly interested in finding out what he thinks about the new combination and what benefits (or lack thereof) it might bring to HIV care.   :)

Offline jackfrost

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Re: Concerned about blood tests
« Reply #19 on: August 29, 2012, 12:43:30 AM »
Thanks for replying Newt I appreciate it and Tednlou. Hopefully it's not an underlying kidney issue, I will have to wait and see what the blood tests show. Results should be back in a couple of days. My fingers are crossed that it was just a one off. Last year my phosphorous was really low, so who knows what the heck is going on with my body. I've also been struggling to get my vitamin D up to normal levels for over a year now. My parathyroid hormone has bounced back and forth from normal to high over the last year as well. I know that the vitamin D, phosphorous and parathyroid are all related.

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #20 on: August 29, 2012, 05:36:10 PM »

I only put this out there because recently in another thread there was talk about people changing meds frequently. I questioned how much that was really happening and for what reasons. If your meds are working well and that side effect is diminishing, it seems it would be more prudent to wait it out until that minor side effect was gone than to switch to another regimen - which holds no guarantee of being as effective and could possibly bring up a whole new adjustment time and set of side effects to deal with.


Thanks for the advice...I just got home from my 1st appointment after starting meds...my bilirubin levels right now are 9.6, but I'm pretty close to being UD (viral load of 1100 as of two weeks ago when blood was drawn)  so his advice was to wait 2 more weeks, get bloodwork again and if I'm UD he'll take away the booster and he said that should get my eyes back to white...so I'm not changing my regimen just going with unboosted Reyataz...which I'm quite happy with.    Thanks for sharing your wisdom and experience with a newbie.   :) 

Offline jackfrost

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Re: Concerned about blood tests
« Reply #21 on: September 08, 2012, 12:54:56 AM »
My followup blood work for the high liver enzymes, very high phosphorous and out of balance electrolytes came back, and all is good, yay! Everything is back to normal and finally after a year my vitamin d levels are almost normal woot woot.

Offline leatherman

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Re: Concerned about blood tests
« Reply #22 on: September 08, 2012, 09:50:18 AM »
all is good, yay! Everything is back to normal and finally after a year my vitamin d levels are almost normal woot woot.
Awesome!  ;D  :D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Rockin

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Re: Concerned about blood tests
« Reply #23 on: September 08, 2012, 07:03:41 PM »
Thanks for the advice...I just got home from my 1st appointment after starting meds...my bilirubin levels right now are 9.6, but I'm pretty close to being UD (viral load of 1100 as of two weeks ago when blood was drawn)  so his advice was to wait 2 more weeks, get bloodwork again and if I'm UD he'll take away the booster and he said that should get my eyes back to white...so I'm not changing my regimen just going with unboosted Reyataz...which I'm quite happy with.    Thanks for sharing your wisdom and experience with a newbie.   :)

Is this the right choice? Taking away the booster, Norvir? My doctor firmly believes that there might be some treatment-failure in the long run without the booster.

I don't know if he is right, just putting it out there.

Offline jimbalaya

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Re: Concerned about blood tests
« Reply #24 on: September 09, 2012, 09:43:15 AM »
Is this the right choice? Taking away the booster, Norvir? My doctor firmly believes that there might be some treatment-failure in the long run without the booster.

I don't know if he is right, just putting it out there.

I found this article on the Body which highlights a study showing that taking away Norvir and increasing the Reyataz to 400mg  doesn't have a negative affect after a 120 week study.   This part was of particular interest to me, because it is the reason my doc is taking away the Norvir:

"Unusually high levels of bilirubin, a possible indicator of liver function impairment that is sometimes associated with Reyataz, occurred less frequently in the unboosted arm (6 percent) than the boosted arm (14 percent). And unsurprisingly, lipid levels looked significantly better among people in the unboosted arm: Total cholesterol, LDL cholesterol and triglycerides all dropped significantly more in the unboosted arm than in the boosted arm (where those values usually tended to rise)."

http://www.thebody.com/content/art58418.html

Offline Rockin

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Re: Concerned about blood tests
« Reply #25 on: September 09, 2012, 11:21:48 PM »
I found this article on the Body which highlights a study showing that taking away Norvir and increasing the Reyataz to 400mg  doesn't have a negative affect after a 120 week study.   This part was of particular interest to me, because it is the reason my doc is taking away the Norvir:

"Unusually high levels of bilirubin, a possible indicator of liver function impairment that is sometimes associated with Reyataz, occurred less frequently in the unboosted arm (6 percent) than the boosted arm (14 percent). And unsurprisingly, lipid levels looked significantly better among people in the unboosted arm: Total cholesterol, LDL cholesterol and triglycerides all dropped significantly more in the unboosted arm than in the boosted arm (where those values usually tended to rise)."

http://www.thebody.com/content/art58418.html

Well fuck me silly...I usually trust my doctor but nice to know he's not doing his research as well as he should. He never mentioned this to me at all.

Norvir was what caused my jaundice. Reyataz alone wasn't doing anything to me. And when I complained about it after almost a year under treatment his only option to me was to change to Fozamprenavir. So far it's not giving me any side effects but I know it's not the drug-of-choice of many doctors. So now I wonder if I should have sticked longer to Reyataz...I don't see a lot of articles on Fozamprenavir so I don`t know if it's more or less effective. He was really adamant about including and sticking to Norvir for the rest of my life.

Since I'm moving to another city I will check all of this with my new doctor and see what she has to say (I don't know why but I think it will be a woman...weird).

Offline bocker3

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Re: Concerned about blood tests
« Reply #26 on: September 10, 2012, 07:33:42 AM »
Norvir was what caused my jaundice. Reyataz alone wasn't doing anything to me.

Norvir doesn't cause the jaundice, it's the Reyataz.  Norvir does BOOST the level of Reyataz, which may be why you saw the increase in Bili then.  Just because unboosted Reyataz may not elevate Bili, doesn't mean you should go that route -- you have to make sure that the Reyataz level remains in the therapeutic range. 
I've been taking boosted Reyataz for 6 yrs -- sometimes my Bili is elevated, sometimes it is not.  Fortunately, it's never been high enough for my eyes or skin to appear yellow.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Rockin

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  • Posts: 494
Re: Concerned about blood tests
« Reply #27 on: September 10, 2012, 10:03:04 AM »
Norvir doesn't cause the jaundice, it's the Reyataz.  Norvir does BOOST the level of Reyataz, which may be why you saw the increase in Bili then.  Just because unboosted Reyataz may not elevate Bili, doesn't mean you should go that route -- you have to make sure that the Reyataz level remains in the therapeutic range. 
I've been taking boosted Reyataz for 6 yrs -- sometimes my Bili is elevated, sometimes it is not.  Fortunately, it's never been high enough for my eyes or skin to appear yellow.

Mike

I wasn't so lucky. If it went through ups and downs like yours I`d probably still be taking it. But, after Norvir came onto the equation, my Bili remained high all the time for 1 year.

 


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