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Promacta side effects

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1 year 6 months ago #73498 by WTow47CLondCty
Promacta side effects was created by WTow47CLondCty
I am new to this site and am hoping some of you can help.  I was diagnosed with ITP about a year ago after a bone marrow biopsy and tons of blood work. I had to have surgery to put in a graft for dialysis and was given platelets and DDAVP through an IV to get me through the surgery.  A few days later I crash and had to have a Catherter put in my chest and was sent to dialysis.  An hour into dialysis I started to bleed at the catheter.  I struggled with bleeding issues, getting platelets, and extra stitches and then finally N-Plate shots.  N-Plate worked for a while and then stopped. 
Since then I have been on Decadron, IV-IG. Promacta, Ruxience, and most recently Doptelet.  Decadron and IV-IG has been the constant with all of the treatments and son far none of these has consistently worked.  I was given 75mg of Promacta and took one pill at night and the next day I had profuse diarrhea from early morning every half hour all day.  The next day I had bad vomiting in the AM.  Needless to say I stopped the pill. SHould I be willing to retry Promacta at 25mg ??????
Besides being on Dialysis I have Polysystic Kidney Disease (hundreds of cysts on bothe kidneys that has taken over the healthy tissue). Lately I have been peeing bright red blood. After hospitalization is has been decided that the cysts have burst and with plates in the low 20's the bleeding of them doesn't stopped. Initial a dose of platelets stopped the bleeding temporarily but most recently that is not working.  I had platelets yesterday morning and still peeing blood profusely this morning.  Yesterday I was proscribed 1mg pills of DDAVP pills and I took one this AM.  The verdict is still out on that and the Doptelet.  I just strted on the max dose of Doptelet (20mg twice a day) about a week ago.  Still doing the Decadron and IV-IG once per week.  If the Doptelet doesn't work my Hematologist said we should try Win-Rho.
Any help would be appreciated.  I can't keep peeing bright red blood.  Urologist and Nephrolgist have no solutions. Says it's up to the Hematologist to get the platelets up.
Thanks for ANY Input
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1 year 6 months ago #73499 by CindyL
Replied by CindyL on topic Promacta side effects
Welcome, Tow.  Sorry you're going through all this.
Since we're not doctors, I think you should discuss the dosage of the Promacta with your hema.  I don't have experience with this medication.
The way I'm reading your post, and I may be misreading it, it sounds to me that the blood you're peeing out is coming from the burst cysts.   Is there anything that can be done to break them up or get rid of them?  Like I said, I'm not a doctor, so if these are stupid questions or I'm not reading your post right, please excuse me.
I really do hope you get the bleeding stopped, or at least under control.
Please keep us posted on how you're doing.
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1 year 6 months ago #73501 by WTow47CLondCty
Replied by WTow47CLondCty on topic Promacta side effects
No way to get rid of the cysts. Draining some is an option but they just come back or others rupture. Way to many to deal with anyway. Bleeding is a common occurence but usual is short lived and self healing but apparently not with ITP' Just back from Dialysis and still bleeding significantly
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1 year 6 months ago #73503 by CindyL
Replied by CindyL on topic Promacta side effects
That sucks!  You really do have a lot on your plate!!
I really hope your doctors can figure something out for you.
Keep us posted.