trying revolade: hi have just been... - ITP Support Assoc...

ITP Support Association

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trying revolade

salmagal
salmagal

hi have just been diagnosed with ITP had steroids and immunoglobulins none of these treatments worked had bone marrow test and platelet transfusion on thursday my consultant is going to try me this week with revolade wondering if anyone else has tried this thanks salmagal

15 Replies

I've tried Revolade. In 5 days my platelets went up to 126 (from 27). Unfortunately after 5 days I had to stop taking it, I got awful rhytmn disorders (rare side effects). Still, doctors say Revolade has shown to be very effective. keep my fingers crossed it will work for you! :-).

salmagal
salmagal in reply to hopeful

thanks for your help hope they can sort something else for you will let you know how i do thanks salmagal

When my platelet count dropped after my second round of prednisone, I was given Revolade to boost my platelets for two months before splenectomy. My doctor said that one of the side effects of Revolade is that, once discontinued, my platelet count will drop to a level lower than it was before. This happened some three weeks after surgery when my count dipped from a high of 495 to 18. A week later, my count spontaneously (without any meds) rose to 65k.

thanks for letting me know hope you continue to rise will keep you posted with my results thanks salmagal

AnthonyHeard
AnthonyHeardAdministrator

Hello Salmagal, Have you tried Rituximab (known as Rituxan in the USA)? I had Rituximab in August 2010 and have been in remission since then thank goodness. I had been on steroids 4 times in the 4 years before I had Rituximab but although my platelets responded well to steroids they fell as soon as I had the steroid withdrawn. I also tried Azathioprine twice but had a very bad reaction (sickness, diziness, rashes, fever). So in August 2010 I had Rituximab. I responded within a week of my first Rituximab dosage (it is given in 4 doses with a week in between each dose). My platelets went up from 34 to 119 within 1 week of my first dose and they have stayed over 100 ever since. My last count was 144 in Novemeber 2011. Rituximab does not work for everyone of course and it does often take 2 or 3 months for it to impact on the platelet count. Anyway, hope this helps and keep us advised of how you get on. Good luck and best wishes.

hi there well done to you Anthony hope this stays good for you havnt heard of Rituximab this is such a scary thing as last month i didnt even know what platelets were so really glad of information and helps knowing im not alone with this thanks salmagal

Hi, Never tried (or heard) of this one but heard Rituxan is used and work widely in the US, when i asked my old Hema for it she said i could not try it as i didn't have cancer. I tried Azathioprine and worked fab now in remission with around a 250k count from a 9k count, preds were awful. Good luck!

salmagal
salmagal in reply to Juliah

hi Juliah think this maybe only used in scotland willing to try anything glad you are in remission gives me hope willlet you know how i get on thanks salmagal

since yesterday my platelets have been down to zero on the blood machine at my local hospital , have been given revolade to take from today ,have taken all sorts of treatments in the past even had a splenectomy last year , my hematologist has said if these dont work i will have to have the ritomoximab again ,which did keep me in remission for about 18 months with no relapses, at the min im have a relapse every week

have been back to hospital today due to severe side effects to revolade am starting rituximab from tuesday , 4 to 6 weeks of this ,have had in the past and it worked for 2 yrs ,hopefully will work again

yogesh_c
yogesh_c in reply to andrea_41

Hi my wife is diagnosed with ITP in may 2013 and she responded well to her first treatment with predniaolone and revolade. But she hospitalised again in October with very low platelet count 3k. She has been taking revolade from last three weeks but it is not working any more for her and we decided upon Rituximab today is her second round of rituxi and as per today morning report her count was 5k which is bit disappointing as a response of first round of rituxi a week back. Hope that it start working soon.

Yogesh

Hi Im new to this site. I lived in the UK for two years on a working visa and was given Rixtuximab. It worked great for three years and kept my platelets at well over 200. Unfortunately I relapsed a year ago and Rixtuimab in Australia is not free. Week 2 on Revolade and I feel awesome compared to how I felt on Prednisone. Its nice to feel normal again :)

crissy22a
crissy22a in reply to Marie34

Hi , I have been on revolade for a few months. When you have it , is by injection

Hi! After a year on prednisone, which worked ok, but platelets down to 19 when stopped, just had rituximab 4 doses finished a month ago. Platelets now upto 157!

Still get quite tired which consultant says is normal. Just have to to it easy when possible. Overall I am glad I could have rituximab treatment!

I have been on it for two years, it keeps them up more now, but I`m down a few times, no side effects.

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