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Avatar universal

Promacta for low platelets,

My doctor is trying to get me approved for taking promacta for low platelets (45,000). I've read the warnings. How serious is this stuff? Have we had anyone on the forum that had a serious adverse event from taking it?
Thanks everyone
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Avatar universal
Only know one here that tried it, i have a pretty well known hepo i asked about using it when i got down to 29,000 and he flat out said there was no way and he was pretty open to trying new things...... Besides didn't they stop the trials on  it?
Avatar universal
They did stop the trials because of hepatic injury and blood clots. the trial has limits on how low the platelets can go. I don't know what that number is, but I am close. Did your platelets rebound? Did they dose reduce the INF?
Avatar universal
I don't want to take it if there is another way to continue without it.
87972 tn?1322664839
Hi Dave,

I’m aware of two folks on the forum that have used Promacta (eltrombopag). One was using it as part of a clinical trial; I haven’t heard from him in a while now, and don’t recall his Medhelp moniker.

Debi (hoocbud) used it as an adjunctive to HCV treatment; she has completed her 48 weeks, and is still kicking around here somewhere; maybe she’ll see this and weigh in.

Did your doc specifically say they were considering Promacta? I think there’s another recent product for platelets out there now, but don’t recall the name of it.

I think there have been others in the forum with lower platelets; in fact, I think Can-do-man was around 15 or 20 k for a while; not good, but he’s around to talk about it. They’ll let you know what’s going on with Promacta pretty soon, right?

Good luck, Dave; getting to UND was huge, now we need to keep you there :o)!

Bill
Avatar universal
Yes mine did rebound with out a dose reduction, they went back up in the 40,s and was in the 50;s by the end of tx.......... Not sure what the cutoff was in the bocep trial i was in but my doctor wasn't much worried unless they got below 25,000

Lets hope yours go back the other way, mine was all over the map during my 2 treatments.
Avatar universal
can-do-man-
I don't have cirhosis, I am stage 2-3. I am surprised they are low, I started tx with the platelets at 149,000.

Bill- I am not sure if it's promacta, I thought that was the only drug available for low platelets.
I just want to enjoy my und without the double edged sword! Is that asking too much!! LOL

I hope they will let me drop a little lower before intervention the way they did with can-do-man.

87972 tn?1322664839
There is at least one other drug, Dave; I don’t know anything about this, other than what I just read on the cover page here. There was no immediate mention of hepatic toxicity in this article; however I didn’t look very deeply either:

http://www.nplate.com/

Bill
Avatar universal
Well that is low without being cirrhotic, jeez that interfon is kicking you all over the place.
87972 tn?1322664839
Oh, and again; none of these are labeled for HCV therapy, to my knowledge; I'd imagine that would affect insurance coverage, etc...
Avatar universal
Dave, I'm tied up right now but here are some old threads that may be useful and include comments by some of the current crew. The one to read first is probably this short, significant one:

http://www.medhelp.org/posts/Hepatitis-C/Eltrombopag-platelet-drug-Trial-Halted-/show/1240951


http://www.medhelp.org/posts/Hepatitis-C/For-Hector-SF---ELEVATE-Study/show/773795

and an earlier discussion:

http://www.medhelp.org/posts/Hepatitis-C/Constant-battle-with-platellet-count/show/98732

I remember mikesimon saying he treated with low platelets in the below 30,000 range. Hope he steps in.

In the meantime, must run but sending another kiss for your UND. And one for the wife.

87972 tn?1322664839
Those are good links, Susan; it’s interesting to look back several years, isn’t it?

Now on an unrelated note; if Dave gets a kiss for being undetectable for a week or so, what’s in it for a guy like me that’s been undetectable for a few years now, huh :)?

--Bill
Avatar universal
Look Bill, maybe you and Cando can kiss while I give Susan a big thank you kiss back.
I would be willing to do a group hug with you and Can, but that's it.

Susan-Thanks for the information you provided and your taking time to find it, I will give my lovely wife a big kiss when she gets home.

Can-do-man
Thanks for the information about your being able to go to 25,000 in your trial. I sent my nurse a message mentioning what you went through and asking them to wait to intervene.

I know that my team is very good and will do the best they can for me.

Group hug and a few bars of kumbaya!! - Dave
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