what's next

[nancy504]

What is the next treatment if ratuxin doesn't work?

[SoporRose]

I don't think there's an answer for that. It will depend on what you've tried before, what your doctor prefers, and where you live (I'm in the U.S.). I hope you find something that works for you!

Ruth

[Jessedavidson in reply to SoporRose]

My son got diagnosed January 2016.4 was his #. March he was given promacta 50mg during the week, 25mg on weekends. His count kept going up. On August 26 he had major surgery. His count was 400. In September he quit taking it, to see what would happen. His platelet count started coming down slowly. He has had 3 more surgeries. Here it is July 20th 2017 ,he had a surgery yesterday and his platelet count of 132. This is the lowest his count has been since he stopped taking promata in September last year. He never had side effects while he was taking it. Thank God insurance paid for the medication. For one month it was $7,000.00 .

[Suntied in reply to SoporRose]

Nplate it's a shot tried everything but this is only drug that helped. It has flu like side effects that have me feeling yuk for 3 days then numbers go up I am 173000 b right now been up for 3 weeks. Tried predisone IVG and rituxan nothing worked till now.

[BurntToast]

What have you already tried? I tried everything and ended up with romiplostim (Nplate) which was the only thing that worked long term for me.

[Rafiq]

Hello Nancy,

Experience suggest that Rituximab, if it works for you, will give you a temporary remission. In my case it was about 10 months.

What happens next, depends on your history and whether you bruise or bleed. My haematologist and I have reached an understanding that unless I bleed or bruise, the clinic will not intervene. in other words, the platelet count in itself is not too important, unless of, course it reaches single figures.

For some unknown reasons my platelets have been fluctuating in the mid 20's for the last 9 months, without any medication, so they are just monitoring me on a monthly basis.

Good luck with your treatment and I am sure it will be a successful treatment for you.

Rafiq

[Zaff]

So far Rituximab has worked OK for me (about 12 months remission so far), my consultant suggested romiplostim (Nplate) as the next treatment to try if necessary