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Promacta treatment

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2 months 2 weeks ago #73538 by RR01
Promacta treatment was created by RR01
Hi ,

I was diagnosed in 2019 and have been on and off on Prednisone. Tried IViG but didn't work , then opted out of treatments for a while. Now my count has dropped to 12000 and Doctor is pushing to try Promacta. Has anyone been on Promacta for several years like say 5+? Did anyone have any issues with liver or bone marrow? Is Doptelet a better option than Promacta? She wants me to try either Promacta or Rituximab and if both don't work then she will go for other options. Please share your experience. Thank you.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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2 months 2 weeks ago #73539 by midwest6708
Replied by midwest6708 on topic Promacta treatment
I don't take Promacta but have been treated with NPlate for almost 10 years. One of its risks is marrow reticulin formation, of which I have no signs. My choice was to wait at least 10 years after the drug was introduced before I'd try it. My reasoning is that if there were major problems with it, the lawsuits would have been flying and the drug pulled from the market before 10 years passed. I may be mistaken, but Promacta has a similar period of use. Reports of either drug having serious side effects are rare in this forum, but milder side effects do happen sometimes. Those usually can be dealt with.

I tried Rituxan 6 years ago. It was a horror show for me, plus it didn't work. My experience was admittedly atypical, but I wish it could be undone.

I'm sorry I don't know very much about Doptelet. It's relatively new, and I haven't researched it. I don't plan to change my NPlate treatment as long as it continues to work. Besides, anything I would switch to would have to pass my "10 year" rule. LOL

Good luck with your decision!
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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 months 1 week ago #73541 by mrsb04
Replied by mrsb04 on topic Promacta treatment
RR01
I tookEltrombopag (Promacta) for quite a few years then lost response to it.
My main complaints with it were the dietary restrictions were a pain in the neck for someone who needs a high calcium diet, and the fact that if ripped out my iron stocks ( a known side effect) so I had to have replacement tablets. If you do choose it as a treatment make sure your Ferritin levels are checked before you start it then regularly afterwards.

I have been on Avatrombopag (Doptelet) for the last year and apart from a little tiredness (not fatigue) I have had no side effects .
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2 months 1 week ago #73545 by RR01
Replied by RR01 on topic Promacta treatment
Thank you. My ferritin levels are quite low :( So I guess I have to continue to take supplements then and the same scenario with my calcium too. Prednisone always brings my count up though. Hope Promacta works so I can get off steroids.

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2 months 1 week ago #73546 by RR01
Replied by RR01 on topic Promacta treatment
Thank you midwest6708
My platelets seem to always come up with one week of prednisone at 40 mg and then it drops when tapered. I hope something else works so I have a safe range of platelets without dropping to 12000. This is the first time going to try Promacta 12.5 mg per day.


 

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 months 1 week ago #73547 by mrsb04
Replied by mrsb04 on topic Promacta treatment
RR01
Promacta can take a while to work, plus with tapering steroids on 12.5mg it might not do much at all. Protocol is start on a minimum of 25mg/day.
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2 months 1 week ago #73548 by MelA
Replied by MelA on topic Promacta treatment
I always like when mrsb responds, she is very knowledgeable!

RR01 you mentioned your platelets go up on 40mg of prednisone after a week but then when taper the count goes down - what does your count go up to and how is pred being tapered?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 months 6 days ago #73561 by RR01
Replied by RR01 on topic Promacta treatment
on 40 mg for 1 week it goes to 170K and then  when tapered it comes down - on 20 mg now - will know my current count tomorrow. Quick quo - they told me that promacta should be taken on empty stomach and I am a coffee freak , got ot have coffe as soon as I get up . Do you all take it in the middle of the night , does it cause insomnia and also any side effects like hair fall ?

 

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 months 5 days ago - 2 months 5 days ago #73562 by mrsb04
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2 months 4 days ago #73567 by MelA
Replied by MelA on topic Promacta treatment
RR are you doing a slow taper? I recall they dropped my pred way too much too fast and my count hit the gutter so had to start all over again. I'm sorry I know nothing about promacta, have only had prednisone and Win Rho.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 month 4 weeks ago #73569 by RR01
Replied by RR01 on topic Promacta treatment
yes  MelA  started with 40 mg for one week then tapered to 20 mg and on it for the past two weeks and already started Promacta 12.5 mg( been 3 days). Going for weekly blood work. Hope something works but getting headaches and some joint pain with Promacta hope it just goes away.

Thanks.

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1 month 6 days ago #73587 by Leo marvin
Replied by Leo marvin on topic Promacta treatment
diagnosed 7 years ago,  treated with steroids 4 times, 8 rounds of retux,  counts ranging from 125 to a low of 7…. nothing worked for me,  started promacta 60 days ago, counts now 350-400.  zero side effects,  

been quite a journey with minor bleeding, exhausted all the time, last 2 rituxan treatments encountered a major allergic reaction including trip to the emergency ward straight from the infusion center…. after 6 successful rounds.  i’ve had 3 marrow biopsies, all negative.

recently discovered i have kidney liaisons… probably cancer… 7 in total, docs won’t biopsy them to avoid spreading cancer.

my advice to anyone facing these tough decisions….  Go to mayo clinic,  they deal with this tough stuff every day.

gods speed and live your life like today’s your last chance,  tell your family you love them
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3 days 15 hours ago #73639 by RR01
Replied by RR01 on topic Promacta treatment
I have been on 12.5 mg alternate days and the count hit 25k so the Doctor asked to do 12.5 daily Promacta. Hope it brings up the count to 50K at least. Fingers crossed. What is the Promacta dosage that everyone is/has been on?
Thank you.

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