Newly Diagnosed ITP sufferer

Hey Guys,

My name is Mark, I am 24 and i have recently been diagnosed with ITP.

roughly 10 years ago i was tested to see if i was a Coeliac which showed i had elevated liver results which led the docs to after a battery of tests and a biopsy to tell me i had Autoimmune Hepatitis, then soon after that i was diagnosed with Ulcerative colitis. Then three years ago i had a Partial Colectomy leaving me with an Ileostomy. After that i was on a Steady set of Medication which was 10mg Prednisolone, 250mg Ursodeocholic acid (Ursofalk) and 1g Mycophenolate mofetil (Cellcept) Until last november when i had to get a hydrocele repair and surgeon said my neutrophils where lower than he would be comfortable to operate on me with. So my Gastro consultant agreed to lower my cellcept. Halving it didn't get the count up enough so they stopped the med and i had the operation this march and in april i got a phone call from my GP saying they needed me to go to hospital ASAP as my platelets and neutrophils where dangerously low.

This was the start of my ITP fiasco. They started me with high dose steroids which worked but 4 days after i got discharged i got taken back in with low platelets, this time they give me Steroids and IVIG. Which seemed to work better but lasted 10-14 days giving me 4-5 days out hospital before i was back in (Last time i was taking in for 2hr nose bleed other times just low platelets) They gave me High steroids and IVIG and this time no response.

So with a count of 2 on wed 9th may they started me on 50 mg of Eltrombopag my count was 4 on thursday 20 on friday (They let me go home) On Monday my count was 122. I am dearly hoping this stuff works.

Anyone else Using Eltrombopag aka Revolade uk or Promacta US.

Anyone else Using Eltrombopag aka Revolade uk or Promacta US.

Yes, I have been on Promacta for 2.5 years now. I am now on the 50mg dosage and counts are stable in the 40k-50k range (around 50k is the manufacturer's stated goal of this drug).

I'd venture to say that it is working, if your current count is 122k.
It also seemed to have worked very quickly for you as well. It took several weeks for me to get above 13k on 75mg.

Yeah the Hematologist team seemed ecstatic that it was working that quick.

I hope if it stays like that i might get reduced down .


Hey Jack how do you find the Eltrombopag have you had any side effects ?

markhudson wrote: Hey Jack how do you find the Eltrombopag have you had any side effects ?

Promacta has been the least intrusive treatment that I have been on over the years. Some folks experience no side effects, but I do. I've had some appetite loss. I dropped around 35 pounds over the first year...so it wasn't all bad side-effects.
You get used to the stuff. I experimented a bit to learn when to take the pills, minimizing the side effects, etc. Everyone is different though.

.

I find if i take it at 10pm then since it makes me sleepy i am fine by the morning and stops me eating dairy which chelates the dam drug out.

Welcome, Mark. Sounds like you have been through quite a bit. Two things we have in common, ITP and making things go BOOM!! I am not a chemist but I like to blow things up!! Sorry not much help with the treatment you are on. Rituxin has been my treatment.