Weight loss, Atripla, liver damage - any advice?

[Northsails]

Hi there,

I dropped from 143pounds to 121pounds (65kg-55kg). I was diagnosed in September last year and started on Atripla in December. After 3 months I had to stop treatment because of high liver enzyme numbers ALT 274 AST 138 despite VL almost undetectable 42, and cd4 of 498/37%.

Weekly liver enzyme tests showed a trend of gradually decreasing after stopping Atripla over the past 2 months, but now they keep spiking. I'm on a strict no alcohol, no sedatives (insomnia), I eat well, sleep well, but because of the spikes my HIV doc has asked my GP (who's wife happens to be a liver specialist), do request an MRI and liver biopsy.

I feel fine but get exhausted very easily - so much that I can't speak Italian, and stutter in my mother tongue of English.

Once my liver enzyme levels are stable they want to start me on Eviplira HAART.

Any suggestions for the weight gain? Being greeted by everyone you meet telling you how much weight you've lost is terrible...

Thanks,
Northsails


Results from 09/06/2013 to 04/08/2014
Date   Type   Value   Notes
04/03/2014   Alanine Transaminase (ALT)   140 IU/L   
04/03/2014   Aspartate Transaminase (AST/SGOT)   75 IU/L   
03/24/2014   Alanine Transaminase (ALT)   79 IU/L   
03/24/2014   Aspartate Transaminase (AST/SGOT)   44 IU/L   
03/17/2014   Alanine Transaminase (ALT)   109 IU/L   
03/17/2014   Aspartate Transaminase (AST/SGOT)   53 IU/L   
03/10/2014   Viral Load (HIV) (HIV RNA)   20157 copies/mL   
03/10/2014   CD4 Percentage   31.1 %   
03/10/2014   CD4 Count   498 cells/mm3   
03/03/2014   Alanine Transaminase (ALT)   130 IU/L   
03/03/2014   Aspartate Transaminase (AST/SGOT)   62 IU/L   
02/26/2014   Alanine Transaminase (ALT)   108 IU/L   
02/26/2014   Aspartate Transaminase (AST/SGOT)   51 IU/L   
02/19/2014   Alanine Transaminase (ALT)   185 IU/L   
02/19/2014   Aspartate Transaminase (AST/SGOT)   85 IU/L   
02/11/2014   Viral Load (HIV) (HIV RNA)   42 copies/mL   
02/11/2014   CD4 Count   451 cells/mm3   
02/11/2014   CD4 Percentage   37.4 %   
02/04/2014   Alanine Transaminase (ALT)   274 IU/L   
02/04/2014   Aspartate Transaminase (AST/SGOT)   138 IU/L   
12/16/2013   Alanine Transaminase (ALT)   63 IU/L   
12/16/2013   Aspartate Transaminase (AST/SGOT)   37 IU/L   
10/16/2013   Viral Load (HIV) (HIV RNA)   38750 copies/mL   
09/06/2013   Alanine Transaminase (ALT)   35 IU/L   
09/06/2013   Aspartate Transaminase (AST/SGOT)   34 IU/L   

[mecch]

Why no CD4 count last september or october at your diagnosis. Its not on your list.

When did you lose the weight? September to December? Or December to March? Or both...

In my completely inexpert opinion, you won't put on weight easily if you are off HAART. 

I know I lost 20 lbs in a few short months from infection to starting HAART but I had astronomic viral loads all that time.  Your VL is more reasonable.

Is the unwritten hypothesis that your Atripla treatment was causing the damage?  I do hope you can find a more liver friendly treatment soon. Or, that they discover the cause of the liver problem.

[Northsails]

Hi,

My bad, see below for corrections.

Was diagnosed in September as a result of the weight loss. Continued to drop until I started therapy, then stabilized. Therapy suspended in February due to elevated liver enzyme levels.

The theory is that the Sustiva component did most of the damage, and they thought an underlying infection / virus contributed. So far they haven't been able to find a cause (and have tested for everything under the sun). The probable outcome is that the sedative (Delorazepam) was building up (very long half life) and not being metabolized by the Sustiva bashed liver.

I'm hoping to get back onto HAART again (Eviplira) but they won't start me on another treatment until the liver situation is under control. So first MRI and Biopsy.

I realize until then gaining weight is going to be difficult.

Was wondering if anyone else has had a similar experience?

Thanks,
Northsails

Results from 09/06/2013 to 04/03/2014

Date                   Type                                           Value   
04/03/2014   Alanine Transaminase (ALT)   140 IU/L   
04/03/2014   Aspartate Transaminase (AST/SGOT)   75 IU/L   
03/24/2014   Alanine Transaminase (ALT)   79 IU/L   
03/24/2014   Aspartate Transaminase (AST/SGOT)   44 IU/L   
03/17/2014   Alanine Transaminase (ALT)   109 IU/L   
03/17/2014   Aspartate Transaminase (AST/SGOT)   53 IU/L   
03/10/2014   Viral Load (HIV) (HIV RNA)   20157 copies/mL   
03/10/2014   CD4 Percentage   31.1 %   
03/10/2014   CD4 Count   498 cells/mm3   
03/03/2014   Alanine Transaminase (ALT)   130 IU/L   
03/03/2014   Aspartate Transaminase (AST/SGOT)   62 IU/L   
02/26/2014   Alanine Transaminase (ALT)   108 IU/L   
02/26/2014   Aspartate Transaminase (AST/SGOT)   51 IU/L   
02/19/2014   Alanine Transaminase (ALT)   185 IU/L   
02/19/2014   Aspartate Transaminase (AST/SGOT)   85 IU/L   
02/11/2014   Viral Load (HIV) (HIV RNA)   42 copies/mL   
02/11/2014   CD4 Count   451 cells/mm3   
02/11/2014   CD4 Percentage   37.4 %   
02/10/2014       Atripla suspended 
02/04/2014   Alanine Transaminase (ALT)   274 IU/L   
02/04/2014   Aspartate Transaminase (AST/SGOT)   138 IU/L   
12/16/2013   CD4 Percentage   29.4 %   
12/16/2013   CD4 Percentage   31.3 %   
12/16/2013   CD4 Count   504 cells/mm3   
12/16/2013   Viral Load (HIV) (HIV RNA)   325 copies/mL   
12/16/2013   Alanine Transaminase (ALT)   63 IU/L   
12/16/2013   Aspartate Transaminase (AST/SGOT)   37 IU/L   
11/17/2013       Started Atripla
10/16/2013   CD4 Percentage   29.4 %   
10/16/2013   CD4 Count   349 cells/mm3   
10/16/2013   Viral Load (HIV) (HIV RNA)   38750 copies/mL   
09/06/2013   Alanine Transaminase (ALT)   35 IU/L   
09/06/2013   Aspartate Transaminase (AST/SGOT)   34 IU/L   

[mecch]

Well it seems that for the weight, you will need to be on treatment.
Make sure your HIV doc checks the combination choice for counter indications with any sleep medicine you may need. There are non-benzos for sleeping! 

I use benzos very occasionally for anxiety and ambient for sleeping sometimes. That benzo you were on - very long acting.

Maybe a holistic method is to figure out and cure the insomnia in a way that doesn't involve drugs that tax your liver.

Perhaps a psychiatrist could get involved to treat all your needs without screwing up your obvious need for HIV treatment.

My experience in Switzerland, where health service is pretty good, is that most doctors are still rather reactive than proactive...  I wonder if your benzo + hiv combo making a bad cocktail, could have been avoided..... 

[Northsails]

Thanks for the reply - yes, I think the idea was to deal with the anxiety of the new diagnosis, stress of the last six months (deaths in the family, difficult personal/work situations) it was like 4 funerals and a wedding (mine) - and got the news the day before...

Anyhow, the start of therapy with Atripla, heavy antibiotics for a chest infection and the benzo (the idea was that it was light and long acting) was apparently too much for my liver to cope with. I specifically asked if was ok - I was unlucky to have this side effect. There is no red light for interaction of those two drugs - hence the search for an underlying existing condition that could have been brought to the surface with the kick-start to my immune system after the Atripla brought me down to almost undetectable and boosted the CD4.

The institute I go to is the best available, they have provided a psychologist to help me through this - without medication. The aim is to get me into proper shape and back onto ARV's ASAP. They certainly are pulling all the stops and trying everything they can - at least I know they have a game plan.

Certainly this has been a life changing learning curve for me!

Let's see what the biopsy says.

Hope that Eviplira (complera) will be kinder to me.

Thanks again for the comments.
North

[Northsails]

Mystery solved, they have retested with highly sensitive tests for certain things.

Turns out I have Hep C. Will know more details on Monday, strain, length of infection etc. Suspect being sewed up in a very dodgy little emergency room in On a little island in the med - when I sliced my hand open last summer could have done the trick... I have no tattoos, piercings and have never shot up in my life...

Any advice from someone in the same boat? HIV+ & Hep C?

Thanks
North

[mecch]

I am sorry to hear of that diagnosis but I a glad they found the cause.

To me, this is a red flag that you could ask some questions. You say you go to "the best institute" around, yet months of liver analysis and nobody checked for Hep C??   Doesn't sit right with me.

Furthermore, Hep C is sexually transmissible.  (I got it through sex.  And not violent sex.)  Most people don't know this (I didn't) but most infectious disease docs should know this and especially those who treat HIV+ patients...

There are a number of people in this forum how have confections HIV and Hep C.  You can do a search and find threads.   The good news is that this year there is one and I think even another, soon, treatment that can in most cases cure a Hep C infection.

In the meantime you are going to need specific analysis to see how active the Hep C infection is, and an estimate of the current liver damage.

Don't drink alcohol.

See if you really have the best specialist looking after you, ok?

[Ann]

Hi North, welcome to the forums.

I was going to post earlier this week and suggest hep C testing, but then I read...

So far they haven't been able to find a cause (and have tested for everything under the sun).

...and figured you had already been screened for hep C.

You really should have been screened for hep C (and hep B) at diagnosis when they ran all the other myriad tests they run on a newly diagnosed person.

However, if you're correct in thinking you got the hep last summer (or it was an otherwise brand-new infection, possibly from sex), you may not have yet developed enough hcv antibodies if you had been hcv tested at diagnosis. (That was in September, right?)

I'll post more about coinfection in the thread you started about it.

Because you have the answer to the liver mystery that you started this thread to ask about, and because you started a new thread to focus on that answer, I'm going to lock this one. This is so all the coinfection responses you get will be in the same place - it's easier for everyone that way.

Ann