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Medication Advice - 1 year into Diagnosis 7 months 4 days ago #73280

  • Shalindewan
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Hi all - I am new to this forum and thought would be good time to share my experience and see if anyone here had any advice.
I am a 35 yo male and was diagnosed last year while on holiday where I got sick and had bleeding symptoms I had a platelet count of 8K. I returned to the UK after being given IVIG and romiplostim which caused my platelets to rise to 400K+ however a week in my platelets dropped to 17K.

I was then diagnosed by the NHS in the UK with ITP.
I was initially treated with a 4 day high dose dex which shot my platelets up to 60 but was down to 9 just 3 days later.
I was then on IVIG every 30-40 days for 5-6 months. IVIG allowed my platelets to rise to 200,000-400,000 before falling again. 
In February this year I was moved onto Nplate Romiplostim as a second line treatment and taken off of IVIG. 

With Romi I started at 250 mcg and have ranged between 11K-150K. When I was 11K i was leaving for a trip to Bali for 1 month so was given IVIG which combined with romiplostim meant I ranged between 190K-700K for a month.

Thereafter I continued on 350 mcg-500 mcg where I ranged between 37K-270K. Then last week my platelets went to 9K and had bleeding and bruising symptoms. I was then given IVIG last week and my platelets are now 932K

Now my doctor suggest I move to mycophenolate. However reading up on the side effects and risks like depression its quite scary. I also read to discontinue Nplate romiplostim if the platelet count does not increase to a level sufficient to avoid clinically important bleedingafter 4 weeks of Nplate therapy at the maximum weekly dose of 10 mcg/kg, which in my case is 900 mcg. I have only gone up to 500 mcg.

Just wondering what anyone would suggest, with my counts able to get so high it seems its the destruction of my platelets where I have a problem and I can produce platelets ok it seems.

Thanks!

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Medication Advice - 1 year into Diagnosis 7 months 3 days ago #73282

  • 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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