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Author Topic: Not feeling safe  (Read 2649 times)

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Offline bobik

  • Member
  • Posts: 315
    • My worksite
Not feeling safe
« on: July 21, 2006, 05:37:09 AM »
Today my consultant nurse from the hospital informed me that my liver enzymes are going up, that obviously there is a problem with my liver. In the last months my liverenzymes were always a little bit elevated but not alarming, but now things have become worse. Still not dramatic, but the stabilisation has gone.

It is probably one of my HIV-inhibitors, but the doctor wants to be sure about that, so today I get a check of my blood to see if there is a hepatitis B- or C problem. Doesn't seem logical to me that I would have that, I am pretty sure it is the Reyataz. When I started those tablets (once daily two tablets of 200 mg with a tablet or Norvir to boost it) my liver immediately protested and I got pretty yellow. My doc tried to get me on 2 tablets of 150 miligrams which gave sufficient blood levels, and alse calmed down my liver. But in the long term it looks like this medication is too heavy for my liver. Somehow it doesn't surprise me because I already noticed the white of my eyes being yellow lately.

So it looks like I am heading toward medicationswitch again. 's Not going to be easy because I have had so many side effects from my meds so far:
ddC gave me an extreme liverproblem,
Zerit gave me neuropathy and lipodystrophy.
Stocrin gave me mental problems, I became sort of autistic and overstressed.
Crixivan gave me extreme problems with ingrown toenails and kidney stones.
Viramune made me overstressed.
Abacavir made me feel unwell, I am not sure wether it was an allergic reaction but I felt horrible.
By the way, all those side effects came when I had been using the meds for a pretty long time already. I have been using Reyataz for over a year now as well.

I don't know which options I have now. Maybe I can take one of my old meds back, hoping that again the side effects will stay away for a long time. I quietly want to discuss that with my doctor. He is on holiday now, I am going on holiday (music course) tomorrow. In August it is time to make decicions. But it looks like I have a period of insecurity ahead of me. That perspective does not really make me happy.

I hope I will be able to forget all this the forthcoming week. I want to sing, I don't want to worry about this. My musiccourses are usually the most relaxing events in the year and I just hope it will be like that this year as well. There is nothing I can do right now anyway.

(Text published in my blog as well)
Coen Honig at Facebook

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: Not feeling safe
« Reply #1 on: July 21, 2006, 06:06:45 AM »
Sorry to hear about your problems with meds.  I'm actually a little surprised that the doc has not checked for hep B and hep C in the past.  Also, are the abnormalities in the liver enzymes (AST or SGOT and AST or SGPT) or the bilirubin levels (the one that makes people look yellow) or both?  If it's just the bilirubin, then that is not necessarily detrimental even if it is abnormal.  If the AST/ALT are also involved, that's a little more worrisome, depending on the degree of elevation.

The 400 mg/day of Reyataz is the recommended dose without the norvir; while the 300 mg/day is the dose recommended with norvir boost (so again, I'm wondering why your doc tried to boost the 400 mg with norvir?).  If a switch is in order, Viracept might be an option, which is a more liver-friendly PI.  Lexiva/Norvir and Kaletra are other options but close liver function monitoring would still be needed.

Hang in there.

Offline bobik

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  • Posts: 315
    • My worksite
Re: Not feeling safe
« Reply #2 on: July 21, 2006, 06:14:56 AM »
Hi Gerry,

Hep B & C have been checked before. There is a doc replacing mine during the holiday and she wants to test it again. I have been a hep. B carrier, 3tc stopped that but it could come back, that's why doc probably wants to check again.

It is both bilirubin and AST/ALT. Not extremely high yet but since it is going up, better to act now than to wait until it gets really bad.

Thanks for the advices.

HUg

Coen
Coen Honig at Facebook

Offline water duck

  • Member
  • Posts: 397
Re: Not feeling safe
« Reply #3 on: July 21, 2006, 06:31:49 AM »
{{{{{{{{{{{{{{{{{{{COEN}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

BE WELL AND SING !!

Sending you lots of ..........................you know !!

Siang

Offline Teresa

  • Member
  • Posts: 1,753
Re: Not feeling safe
« Reply #4 on: July 21, 2006, 08:24:36 AM »
Coen,

Enjoy your holiday! Sending you good thoughts and prayers.

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline joemutt

  • Member
  • Posts: 1,039
Re: Not feeling safe
« Reply #5 on: July 21, 2006, 10:23:27 AM »
Coen, sweetandstrongman, I wish you strength and hope you will find a solution, once more, I can only send you my wishes for the best outcome :-*

Offline Oscar

  • Member
  • Posts: 244
  • 20 Years POZ
Re: Not feeling safe
« Reply #6 on: July 21, 2006, 10:36:42 AM »
Coen,

Sorry to hear your having these problems. Hope you can get this resolved soon.


{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{HUG}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

Dan

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Not feeling safe
« Reply #7 on: July 21, 2006, 11:12:31 AM »
Hi Coen,

Isn't it interesting that when your doctor is on vacation, you can come here and share with us and maybe have some real input about your specific problems with the meds, and get more back than any five visits to a doctor.  Thank you Gerry.

Anyway, just wanted to say I understand, and I long for the day when we all will not have to deal with these toxic substances.

IN Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline bobik

  • Member
  • Posts: 315
    • My worksite
Re: Not feeling safe
« Reply #8 on: July 21, 2006, 11:22:35 AM »
Hi Tim,

I wouldn't change my doctor for the world. He has gotten me through the deepest misery in my life, not only by taking good care of me but also by being a wonderful man who feels for me, who offers to visit me at home when there are serious trouble, who is really interested in me. I mean, this is not why I posted. Gerry's advices are appreciated, really. But my doc has helped me to live the last 13 years with aids and he is doing a good job.


What I want to share is my worries, the insecurity. They are harder to deal with than the side effects themselves for me.

Hug

Coen
Coen Honig at Facebook

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Not feeling safe
« Reply #9 on: July 21, 2006, 04:32:31 PM »
My Apologies Coen,

I am neither reading or composing well these days, and I didn't mean anything negative in that statement, only the relavence of this forum for us all. 

I too wouldn't change my doctor of anything, and understand your faith in yours.  Thanks for reminding me to read, think, and then read again.  ;)

In Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline bobik

  • Member
  • Posts: 315
    • My worksite
Re: Not feeling safe
« Reply #10 on: July 21, 2006, 04:49:31 PM »
Thanks Moffie......love you

Today was not a bad day really. The morning I was pretty emotional but later on in the day I calmed down. Had diner with my love in a restaurant, we talked about the situation and somehow that always calms me down. Also Eirin called me, which I found great!

I'll keep you posted on what happens.

Coen
Coen Honig at Facebook

Offline bobik

  • Member
  • Posts: 315
    • My worksite
Re: Not feeling safe
« Reply #11 on: August 03, 2006, 07:15:51 AM »
Ok guys, here is the update:

My liver calmed down, according to my last checks. Liverenzyms went back to what they have been in the last couple of months, still somewhat to high but better than the results I got 2 weeks ago.

Also good news: My bad cholesterol went down to normal levels. Albeit 4.2 and the upper side of the normal range is 4.5, but the results are much better than they were. So my cholesterol lowering yoghurt seems to work.

So for now, no changes, at least until my next check up I go on with the meds I am using now. I feel somewhat relieved.

Coen
Coen Honig at Facebook

Offline joemutt

  • Member
  • Posts: 1,039
Re: Not feeling safe
« Reply #12 on: August 03, 2006, 08:26:32 AM »
Good for you Bobik, I'm glad things are on the up.

Offline Trish

  • Member
  • Posts: 332
Re: Not feeling safe
« Reply #13 on: August 03, 2006, 09:49:41 AM »
 ;D Good for you Coen... I am happy for you.

All the best,

Trish
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

 


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