Alternative medicines and transaminase levels

[mike716]

Hello again fellow hepatitics! (That's the word used for us in Argentina, and it seems to work okay in English, too. I hope nobody minds.) I've been running around like a madman these past two holiday weeks trying to get my biopsy slides together to bring to New York for the new Boceprevir trial that I have some hope of getting into (despite my higher-than-acceptable hemoglobin). In the meantime, I've been taking some alternative meds and now have a series of blood analyses done while on them. I could use a little help in interpreting them, if there's anyone here who knows about these things.

Here are the facts: For the past two months I've been taking four meds: alpha-lipoic acid, Siliphos (silybin conjugated with phosphatidylcholine), polyenyl-phosphatidylcholine, and Vitamin E. These are all reputed to have an antioxidant effect in the liver, which I am hoping will stop or slow down fibrosis progression.

However, the results so far are not encouraging. My transaminase scores on a blood test just before starting the meds (at a reduced dosage) were AST 71, ALT 93. After one month, they were AST 64, ALT 90, which at least were no worse. But two weeks later, after increasing to the normal dosage, they shot up to AST 99, ALT 151 (ouch!). I got scared and dropped the dosage back down to the initial reduced doses and, in the blood analysis of 30/12/2009 (I didn't take the meds on the morning they drew blood), got AST 70, ALT 105, no better than before I started.

I'm still taking the meds but am getting kinda discouraged. Other people taking these (and other alternative meds) have succeeded in getting their transaminases down. I wonder why mine haven't.

Anyone have an idea?

Thanks!

Mike

[mike716]

You're right, it's a weird question. And this is a weird trial. I called the coordinator again today and she said that lots of people already have low hgb and that I'm lucky mine's still up there. Unfortunately, it lets me out of the trial.

It ain't fer nuthin they call me Bad Luck Mike.

Phooey on New York in the snow!

M.

[mike716]

I want to thank everyone who posted on this thread. It's always nice to hear from old (and some new) friends.

Nevertheless, I still have no answers to my thread query about the alt meds I'm taking and my weird transaminase levels. I sure could use some help with that. What do ya'll say if we drop the hemoglobin/trial issue for the moment and move on to what's really worrying me right now, which is what those alt meds may be doing to my liver and if I should keep on taking them?

Thanks.

Mike

[Trish77]

Mike, I'm not sure we have those answers.  You're the first person I've seen on here asking how to LOWER hemoglobin instead of increase it.  Most people are trying to keep their hemoglobin up to acceptable levels, not lower it so perhaps those answers simply aren't here.

[mike716]

Take riba before screening for a trial? You must be joking.

[mike716]

I think you're right, unfortunately, about the hemoglobin. However, the thread query I was hoping to get some answers on was about those alternative meds and my transaminase levels. Looks like everyone got sidetracked. I wish I'd never mentioned the darn trial.

M.

[IAmTheWalrus]

Hope you get in the trial, Mike. Strange to see a requirement for low hgb. Best luck.

Brent

[Trish77]

"I had no idea about any exclusions in any trial. I took Mike at his word and simply responded. I was rather surprised that no one mentioned "ribavirin" and perhaps that further explains why I posted. I am certainly not recommending or endorsing using ribavirin to lower hemoglobin but, as all of us who have treated know too well, ribavirin does lower Hbg - and quite efficaciously, I might add."

I simply didn't understand the odd requirement for a low hemoglobin, seemed contrary to conventional logic - hemoglobin lowers on treatment usually so to ask for low hemoglobin going in didn't make sense.  If it doesn't make sense, I go looking for the reasoning behind it or question it so went to the trial inclusions and exclusions and found the answer there.  Not that I thought Mike's word wasn't any good, just that it was possible he'd misread the trial information - it happens.

Taking ribavirin to lower his hgb was just too far out of the box I guess.  Do you think that would be considered jeopardizing the "treatment naive" parameters to some degree, like taking a ribavirin lead-in?

[can-do-man]

In past Boceprevir trials there has been a 10% lead-way. You won't find this on clinical trials site. The trial i was in for relapsers stated your platelets must be at least 100,000 which mine wasn't. I called the number listed and was told about the lead-way and i also confirmed this with my Doctor. Something you might want to check into.

cando

[WriteItDown]

Nope, I sure don't know exactly what they test for or how. I just know they did a tox screen and I assumed they might be able to see if something weird was going on.... but maybe not.

[mikesimon]

I know measuring plasma levels of ribavirin is either difficult or expensive because it is rarely, if ever, offered here in the US and we know how valuable that information could be. So, I'm not at all sure about a tox screen detecting ribavirin. Maybe you know that stuff but I don't.
Mike

[WriteItDown]

Yes, this trial does indeed exclude folks with Hgb above 15.  Since they're testing out what works best to deal with the anemia, they WANT the trial subjects to become anemic, so they're choosing people more likely to.

I'm afraid they're going to do a tox screen on you before they accept you anyway, so the riba solution is out... yanno, they need to eliminate all you riba addicts....

[mikesimon]

I had no idea about any exclusions in any trial. I took Mike at his word and simply responded. I was rather surprised that no one mentioned "ribavirin" and perhaps that further explains why I posted. I am certainly not recommending or endorsing using ribavirin to lower hemoglobin but, as all of us who have treated know too well, ribavirin does lower Hbg - and quite efficaciously, I might add.
Mike

[Trish77]

Okay...I read further on the clinicaltrials.gov site and I think I have my answer...

Boceprevir/Peginterferon/Ribavirin for Chronic Hepatitis C: Erythropoietin Use Versus Ribavirin Dose Reduction for Anemia (P06086 AM1)

http://clinicaltrials.gov/ct2/show/NCT01023035?term=boceprevir&rank=6

Hemoglobin concentration at Screening must be <=15 g/dL for both females and males.

[Trish77]

Mike, I was looking at the exclusion list for the Phase III Boceprevir trial:

http://clinicaltrials.gov/ct2/show/NCT00705432?term=boceprevir&rank=2

Protocol-specified hematologic, biochemical, and serologic criteria: Hemoglobin <12 g/dL for females and <13 g/dL for males; Neutrophils <1500/mm^3 (blacks: <1200/mm^3); Platelets 1.5 x upper limit of normal (ULN)

Are you sure about that upper limit exclusion for HGB?  Makes no practical sense - is this fleshed out further in the trial docs?  What does it list as a reason for this exclusion if that is the case?

Btw...hope you get in.  I think this is a good chance for you.

Trish

[nygirl7]

You are so funny MIke that is exactly what I was going to say (although I was going to say 1800 a day cause I figure he needs to do it fast!  ;)

[mikesimon]

Lowering hemoglobin is quite simple. Get your hands on some ribavirin and take 1000 mg or more per day and your hemoglobin will drop.
That's what's called "hemolytic anemia".
Mike

[tashka]

Mike, your hemoglobin is normal for a male. It is actually a very good thing (not considering the study you want to get into). My husband's hemoglobin  is much lower.

Unfortunately, there is nothing you can do to lower it. It is impossible. Even if you will eliminate meat, your body will get iron from other sources and from the body stores and maintain hemoglobin level.

[GreatBird]

I've always had hemoglobin on the low side. It's genetic. I don't know what to suggest unless it's to go vegetarian or macrobiotic for a bit to see if eliminating dietary iron helps. It's possible you might want to reduce folic acid as well.

Those are just guesses.

I don't think any of the supplements (which aren't really alternative meds) you've been taking will lower hemoglobin.

[mike716]

Come on all you holiday-makers, snap out of the New Year's hangover and help me out with this, okay? I know there are people with experience in transaminase levels and alternative meds lurking around out there. You can't all be ticked off at me. Or are you? Have I finally alienated the entire world? (For all those who hate me, you'll be pleased to know that I have finally become so worn down by the hep and mostly by the MDs that I've had to give up tango dancing. So there. Happy? Now will ya answer the fri**in question? Please? Pretty please? Pretty, pretty, pretty please?)

Sheesh!

M.

[mike716]

Any tips on getting mine down? Do you think a couple of quick phlebotomies will work?

How about if I cut my veins, wait until I've lost a liter, then call 911? [Just kidding.]

Mike

[Gee704]

As of my last blood results I was below the max on hemoglobin for acceptance.

Good luck to you!

Gee

[mike716]

Hi, Mo. Sounds like the ND in Seattle gave you the right formula. The stuff I'm taking is all on the Gauf/HR list, and they've worked for some people, but not for me. At least, not yet. I'm worried that they may be causing more damage than they're curing. And my transaminase levels are getting into scary territory. If I don't find a PI trial soon I'm gonna go bananas.

M.

[mike716]

Thanks, Gee! Same to you.

What's your hemoglobin level? Are you below the 15g/dL maximum for acceptance in the trial?

My hgb is around 16.5, so the only way I'll be accepted is if I can get it down. I'm not very optimistic. But hope springs eternal...

M.

[mike716]

Thanks very much and a happy New Year to you, too!

Mike