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TOPIC: My roller coaster ride with ITP

My roller coaster ride with ITP 9 months 1 week ago #64881

  • julane123
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Hi, I just wanted to share my story in case it would help anyone else with some of these issues. I was diagnosed with ITP in October 2017 at the age of 59. I was hospitalized with a count of 7K and bruises, but no bleeding. I received IVIG, steroids and antibiotics. After 3 days and some tests I went home on 60mg Pred with a weekly taper and CBC. My counts went up and all was good, I thought. I was so wrong! By the middle of December my counts were 26K and I was put on 50mg of Promacta and my counts went up. By February they were in the 250K range and the dose was lowered to 25K. By March 8 I was backin the hospital with a 4K count, stayed overnight. I was put on 75mg Promacta, and 60 mg Pred with weekly taper and blood test. My platelets went over 400K and Promacta was lowered to 50Mg. At the end of April my counts dropped to 48K and Promacta was raised to 75mg. My platelets went up to 147K by the end of May. Everything seemed to be going good until July 26 counts, which were 50K which is not bad, but down. The problem came in August when they had dropped to 24K and I was put back on Pred 40mg with taper. The Tuesday after Labor Day my counts were 743K . I had just finished Pred and doctor stopped Promacta. I haven’t taken any medicine since. Last Monday, I was at 24K and have been dropping all week. Monday I am starting a 4 week regimen of Rituxin and really hope that works for me. My last year has been like a roller coaster platelet/CBC ride with clinic and doctor visits. I’m ready to get off this “ride”. My doctor told me I was a difficult case.
Thanks for reading my long post. I hope this helps someone that is struggling with ups and downs. Any suggestions will be appreciated.

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My roller coaster ride with ITP 9 months 1 week ago #64882

  • mrsb04
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  • Diagnosed in 2014. I'm also a renal specialist nurse
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I have been on Eltrombopag (Promacta) for 20 months. It took a lot of jiggling about with the dose to get my count stable. Sometimes I'd take 50mg/25mg on alternate days some times 25mg/25mg/50mg or 50mg/50mg/25mg. I have now been on 50mg daily since April, my counts have stayed in the 40s on that and this week were 65.
Maybe it was the extremely high doses of pred that bumped your counts to artificially high levels. I've been tapering pred for a long time now. and have never taken more than 20mg as a bolus if my counts dropped.
Rituximab is a very aggressive therapy and not without side effects. Personally I would give the Eltrombopag more time by jiggling about with the dosing.
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My roller coaster ride with ITP 9 months 1 week ago #64891

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My impression is that you do respond to Promacta, but your doctor doesn't seem clear on how to dose it properly. Counts should be around 50k to 100k, no higher.

I agree with MrsB.
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My roller coaster ride with ITP 9 months 1 week ago #64930

  • momto3boys
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Just popping in to say that I agree with the others. Promacta can be challenging to dose to achieve a stable count. In looking at your numbers I feel like there was way too much panicking with even mildly low counts in the 20s (not a cause for major concern as long as you aren't having massive bleeding) and then overreacting with double treatments of Prednisone and Promacta dosage increases.

When I decided to try Promacta (I'm still taking it), I wasn't trying anything else concurrently. If you start throwing multiple treatments in there at once, you have no idea how much of any one treatment you need and it's that much harder to get a stable count. You should be shooting for a count around 50K. I would be terrified of some of the high counts you got with the Pred/Promacta cocktail. The danger with drugs like Promacta is the increased risk of stroke with high counts. That is what scares me personally.
At the beginning, I had many instances of counts in the teens and twenties and just kept tweaking the dose gradually to try to improve things. You may have to be patient with some lower counts than you might like as long as you aren't bleeding. Over time hopefully you can achieve some stability. In your case I think it's worth it to give it another shot before jumping to Rituxan. Good luck.
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My roller coaster ride with ITP 9 months 1 week ago #64943

  • julane123
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Thanks for all the replies. The high platelet numbers scared me too. I don’t ever want anything like that again. That was more scary than than low platelets.
Today I was supposed to start Rituxan, but they didn’t check for hepatitis virus and so on hold for that test. My platelets were 2K and I received dex 20mg by IV. I wouldn’t take the 40 mg Pred dr wanted to start. I’m afraid of over treating and high counts again.
To go back on Promacta I would have to change doctors, which I am thinking about.
Thanks for all advice.

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My roller coaster ride with ITP 9 months 5 days ago #64965

  • Hal9000
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julane, some (row 1) folks can have a wild count ride. In the not too distant past, user 'Cindy1' had a very extreme experience.
pdsa.org/discussion-group/7-treatment-general/29848-is-promacta-not-effective-if-i-crash-after-i-am-on-it.html?start=120#62691

What turned out to help settle the extremes was a low dose of Pred. The Hema didn't want to prescribe Pred - low or high dose. Just more Dex pulses or IVIG treatments. Ha, I recall her doctor commenting about how bad her case of ITP was too. I think Cindy got her GP to prescribe the Pred. 5mg, or maybe as much as 10mg, for a few days was all that was needed to, shall I say, catch falling counts. If you look through her old posts you can probably get better details.
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My roller coaster ride with ITP 9 months 5 days ago #64971

  • julane123
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Thanks Hal for that information. I will talk to my doctor about that if Rituxan doesn’t work.
Today I received my 1st Rituxan treatment. My platelets were 6K up from the 2K on Monday. So far no side effects, but will be closely monitoring for any reactions. I go next Tuesday for round 2.
I do respond to steroids so I’m hoping this Rituxan will give me some remission time.

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My roller coaster ride with ITP 8 months 4 weeks ago #65009

  • julane123
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Just an update, I’ve completed my 2nd round of Rituxin and no side effects. My blood pressure was up a little from the dexamethazone. My platelets were 87K, so making some progress. I think the rise in platelets is from the steroids and not the Rituxin yet. From what I’ve read it takes a few weeks to start working. I’m still optimistic about this working. My next round is next Monday.

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My roller coaster ride with ITP 8 months 3 weeks ago #65010

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Good luck with the Rituxan. It has worked well for me over the past 13 years, the first time giving me a remission of 5 years. It does take a few weeks to start working.
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