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?
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?
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?
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)!
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.
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:
I believe it will be the platelet limits or limits on reducing INF of the trial that are the critical factors.
45 isn't very low, although since you started at 150 that is quite a drop.
During SOC treatment when I got down in the low 20s the docs started to get concerned. I went down in the upper teens (17-19?). At that point my 12 weeks were up after not dropping my viral load more than 2 logs. So being both a non-responder and having platelets in the teens ended my treatment. After a few weeks my platelet level return to norm 70-80 thousand. Norm because I have cirrhosis.
Bleeding was never a problem for me.
I have talked to my hepatologist about treating with the new STAT-C drugs when they come to market. If I do treat she said I would need transfusions to keep my platelets in check during prolonged treatment. I defer to my doctor on this one as having advance cirrhosis and taking a drug with its potential toxic liver effects appears very risky to me.
[Posted 05/12/2010] GlaxoSmithKline and FDA notified healthcare professionals of a new safety finding in patients with thrombocytopenia due to chronic liver disease treated with eltrombopag, a thrombopoietin receptor agonist approved for the treatment of thrombocytopenia in adult patients with chronic immune (idiopathic) thrombocytopenic purpura.
Action required by Health Care Professionals:
* Health Care Professionals are reminded that Promacta is indicated for the treatment of thrombocytopenia in adult patients with chronic immune (idiopathic) thrombocytopenic purpura (ITP) and is not indicated for the treatment of thrombocytopenia in patients with chronic liver disease. (!)
* Treatment with Promacta should be aimed at increasing the platelet count to a level that reduces the risk of bleeding; Promacta should not be used in an attempt to normalize the platelet count. (!)
* Use caution when administering Promacta to patients with known risk factors for thromboembolism.
* Exercise caution when administering Promacta to patients with hepatic disease. Use a lower starting dose (25mg once daily) of Promacta in patients with moderate to severe hepatic disease and monitor closely.
And as reluctant as I am to cite the following, being a 'die rather than reduce' nut, our former forum medical expert, Dr. Dieterich said this about reducing due to low platelets:
"by Douglas Dieterich, MD, Sep 12, 2008 06:41AM"
"As long as his virus is undetectable, then it should not be an issue. However in general I am not in favor of dose reduction. I just spoke to his doctor this week about him. She is very happy with his progress! DTD"
I am really sick today from tx, don't know what is wrong with me, but I feel pretty bad. Much more then the normal tx sx that I have experienced so far.
It's good to know we had a doctor who has been through treatment. There are probably quite a few out there that would never admit it, but coming clean on the internet is internet is empowering to us all. I am glad to hear he doesn't feel the dose reduction would hurt at this point.
Thanks Judy, I've barely moved all day. I don't know how people get through these bad days when they are working. I took my neupogen yesterday and my interferon today same as last week, but maybe the two so close to each other are overwhelming my body.
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