Eltrombopag advantage?

I have had ITP for 12 years and have kept fairly stable with regular IVIg treatments for the past 6 years. I go every 8 weeks - it usually takes 3-4 hours and sometimes I am wiped out for the rest of the day. There are also times when my counts drop unexpectedly before my scheduled treatment and I have to go in quickly.

I would love to hear from some people who have tried Eltrombopag. To me it seems that taking a pill would be so much easier than the inconvenience, pain, and cost of regular infusions. Maybe I'm wrong? But my doctor won't even consider letting me try it and it is frustrating. Any thoughts? Doctor's side or mine either way?

Thanks!!

Hello. I was on the study for Eltrombopag/Promacta in 2009 and it was great for me I went from 17K to 425K in 30 days of treatment and ended up 1 week on and 1 week off of the drug. Well this past Feb 12the I had a bleed. I started Prednisone 50mg daily for 2 weeks until I sorted out the purchase of the Promacta. I received my prescription of Promacta this past Thursday (25mg). My count while on the prednisone had been 3K/12K/13K/5K. My count was 6K on Friday's CBC. I went back this past Monday for a Dr. visit and CBC. After 4 days of Promacta my count was 21K. So it does seem that it works great for my situation. Hope this helps.

I was diagnosed at 10 or 11 myself in the 1960s.

It's a new drug and the long term side effects are not known, which is probably why your doctor is wary. Mine was not keen to try the new drugs with me until all else had failed and until we felt I had no option. Maybe in five years time, or ten or twenty, we'll all get leukaemia or lymphoma from it. Cheery I know but we have to be realistic and understand that nobody knows and some doctors are not willing to take the risk when there are other alternatives.

Kd - have you tried Rituxan or any other med?

yes - done rituxin, steriods, vincristine, spleen gone....everything except the new stuff!

My doctors at Johns Hopkins didn't hesitate at all with Eltrombopag/Promacta. Like I said I was on the study for the drug a few years ago. Maybe because it worked so well for me. What were their reasons? I am going back on Wednesday and would like to find out why the hesitation. Are you in the States?

My Husband was diagnosed with ITP in 1998, treatment at that time was IVG. then it came back with a vengence in 2007. Had IVG, platlets, Winrho and was on Prednisone for almost 4 years. Winrho was a fast temporary fix for him. In October 2009 has 4 weeks of Rituxin treatment and the worst for him. He had every bad reaction from vomiting, diarrhea, huge hives to anaphylactic shock syndrome that lasted till May 2010. ITP went into remission after that. Numbers were always in the 100,000 to 200,000. Jan. 17, 2012 he had a colon resection, everything was going well until February 15, 2012 admitted into hospital with 6,000 platelets. His doctor tried Prednisone, Winrho, IVG and platelets, nothing worked the were on a roller coaster ride and even plumetted down to 2,000. Then his doctor told him he wanted to start him on Promacta 50 mg. and was on Prednisone 120 mg, 4 days later he was discharged from hospital at 20,000 platelets, now on March 5, couple of days ago they skyrocketed to 510,000 platelets. Which is too high now, I worry about blood clots forming. His bruising is an eggplant deep purple color now from IV in hospital, getting me very worried. His doctor told us on Mon also that he would need to remove spleen in order to be removed from Promacta... Is doctor a Quack???? Help!!!

Hi KDmiller

my doctor said the same thing. He said this drug is 2 years old and the long term side effects of this drug are not known. So he would use it one me as a last option.
Seema

IIRC: Promacta has been available in the USA for at least 4 years (2008 it got accelerated FDA approval)...fully approved in 2011.
I've used Promacta for over two years now. It beats anything I've used over past years to treat ITP.
I started on it with a count of 4k. The initial 50mg dosage didn't do the trick, bumped to 75mg and count rose to 35k after a couple weeks. Six months later my count had been holding pretty stable around 50k, so the dosage was reduced to 50mgs/day. Since then, I take two 25mg pills around 3:00am and my count stays in the 40k-50k range with far fewer side effects than any other med I've used. Bonus: now that it is stable, I only need to get my counts checked twice a year! Note: Since I see some mentioned hospitals & such; my hematologist is at 'The James Cancer Center' (aka: The Ohio State University Comprehensive Cancer Center - Arthur G. James Cancer Hospital and Richard J. Solove Research Institute). Yep, a long name, but I can't say enough about how wonderful that place is.

Long term? Everything has some sort of possible long term effects. Most of us have popped Prednisone like candy, it's been around since the 1950's....but have you read all of Prednisone's known long term possibles? Yikes!
Okay, I may grow a third eyeball in 20 years (if I make it to 79). Then again, I may get hit by a bus today.
Meanwhile, my ITP is being treated effectively and in a fairly stress-free manner.

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yes - my doc's hesitation is the possible/unknown side effects. and i agree, weirdjack - there's always that risk with any medicine and i feel like if i am willing to take that she should consider. i was on heavy steroids for at least 8 years. and i'm thinking there are few people, like me, who have been on very regular IVIg infusions for 7 years. who knows what it's really doing to my body - and i do have numerous other minor problems that i wonder whether it could be related to the IVIg.

caitandbri - i'm sorry you've had such a roller coaster with it and i guess that is my doc's hesitation. and i have no idea about the removing the spleen before taking away the promacta....sorry!!

all in all we know ITP is frustration on top of frustration

Caitand Bri- You might want to tell your story as a new topic so you'll get more responses. It doesn't make sense to me what your doctor said. I hope you're not still taking Promacta with counts over 500K. Could be very risky. Thats a lot of prednisone on top of 50mg Promacta. good luck

KD- I've told my story before but briefly: Refused splenectomy(i heart my spleen) Rituxin didn't work. I took Promacta for 6 mos last year 50mg. I was able to get completely off prednisone which was so great. Then I stopped Promacta for 4 mos and have recently started back at 25mg. Last year 25mg didn't do anything, this year that dosage is working. My counts went from 13K to 34K and are holding- woo hoo!

Haven't had any noticeable side effects when I keep my counts around 30-50K. I get a CBC done every 2 wks and a CMP for liver function done monthly.

Like my hemotologist said- "there is a chance of side effects with these drugs but with Prednisone its a guarantee."

"there is a chance of side effects with these drugs but with Prednisone its a guarantee."

Poseymint, THAT is priceless! I wish I'd have thought of it.

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Since my hospital stay I received my Promacta and started end of February I started with 25mg a day. I went from 6 to 21 to 24 to 32. I have HEPC and that is the only real problem with Promacta for me so I started on 1/2 a pill every day (12.5mg) because my ALT/AST was a bit high, well alot high. Anyway after 12.5 a day for 2 weeks I was up to 94, but ALT/AST not going down. I then did 12.5 every other day and dropped to 80 on the next test 10 days later ALT/AST still not good. Well the next test didn't turn out as good for my platelets and no liver function was done that was 6.25 every other day, dropped to 24mg 10 days later. I am now another week on 6.25mg every other day and back in on Monday. I can tell my platelets are lower than they have been because this morning I woke up and my gums had bled during the night. I need to stay above 10, would love 20-30 but because of my liver function test Dr. is trying to ease me off of Promacta or hope liver function is better. Disappointed but let's see what the liver function test/platelets are this week. I would love to get treatment for HEPC and the studies I have found say my Platelets have to be above 90, which I can get them to with Promacta if need be I imagine. I did Interferon treatment with the Promacta/Eltromopag and my ALT/AST dropped to normal. Not sure how all of this will work out. Fingers crossed liver function is up and platelets above 10, would hate to be back on Prednisone which did nothing for me anyway.