Aa
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
Thanks everyone
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.
- Dave
- Dave
Dave,
I had days like that. Horrible days now and then. It's monday, the day will soon end. Hopefully Tuesday will be better.
Judy
I had days like that. Horrible days now and then. It's monday, the day will soon end. Hopefully Tuesday will be better.
Judy
thank you Susan, you rock too!
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.
Have a great day,
Dave
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.
Have a great day,
Dave
Dave, Dr. Dieterich was an amazing asset to this forum. I don't know if you're aware that he had HCV himself and treated either once or twice.
His post is something to ponder, given he considered it okay to reduce if UND, in the case of low platelets (depending on the individual circumstances, I'd say).
I think he was (and is) on the ball - your tx team may know him.
Best of luck sorting this out.
In the meantime, you rock, whether to Kumbaya or otherwise.
Susan
His post is something to ponder, given he considered it okay to reduce if UND, in the case of low platelets (depending on the individual circumstances, I'd say).
I think he was (and is) on the ball - your tx team may know him.
Best of luck sorting this out.
In the meantime, you rock, whether to Kumbaya or otherwise.
Susan
hector-Thanks for the info. It seems that many have been at 40-50,000 and their doctor didn't worry. I really hope we can wait before adding something with those potential risks.
Susan-
Thanks for the quote from Dr. Dieterich. I would really like to have more then one blood draw that is und before intervention. I am really hoping this can wait.
The song is very cool! I like it even better then kumbaya!
Dave
Susan-
Thanks for the quote from Dr. Dieterich. I would really like to have more then one blood draw that is und before intervention. I am really hoping this can wait.
The song is very cool! I like it even better then kumbaya!
Dave
Not to change the topic but I think it was Peter Sellers, aka, Salvo who took Promacta for a long time.
http://www.medhelp.org/personal_pages/user/488823
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"
http://www.medhelp.org/posts/Hepatitis-C/Low-Platelet/show/586333
Undetectable may be the operative word here.
Dave, here's a part of a song that makes me happy and that I'm singing to celebrate your UND:
http://www.putumayo.com/en/player.php?url=Publish/track/425/Track_01.wma&type=wm
And I guess I'll have to sing the entire album to Bill. His g-kids will love this one.
Susan
http://www.medhelp.org/personal_pages/user/488823
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"
http://www.medhelp.org/posts/Hepatitis-C/Low-Platelet/show/586333
Undetectable may be the operative word here.
Dave, here's a part of a song that makes me happy and that I'm singing to celebrate your UND:
http://www.putumayo.com/en/player.php?url=Publish/track/425/Track_01.wma&type=wm
And I guess I'll have to sing the entire album to Bill. His g-kids will love this one.
Susan
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.
Go luck.
Hectorsf
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.
Go luck.
Hectorsf
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
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
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
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
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.
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.
Oh, and again; none of these are labeled for HCV therapy, to my knowledge; I'd imagine that would affect insurance coverage, etc...
Well that is low without being cirrhotic, jeez that interfon is kicking you all over the place.
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
http://www.nplate.com/
Bill
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.
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.
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.
Lets hope yours go back the other way, mine was all over the map during my 2 treatments.
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
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
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?
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?
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