Update!

So basically I've started my rutoximab treatment which is gonna last for 4 weeks! As the steroids aren't working! My bone marrow examination went fine, didn't have much pain and the swabs the doctor took of the liquid was fine and normal. Just gotta wait for the biopsy results, CT scan was all clear too! My platelets have dropped a little as there reducing my steroid intake but feeling well looked after! Anyone know much about this rutoximab treatment, I've read some stuff about it but id rather hear people's actually experiences with it!! :D

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  • Like all ITP treatments it works for some people and not at all for others. When it does work it can put people into remission for months even years. Be aware that after completing the four week course it can take six weeks before a decision can be made as to whether it has been successful or not.

    Regrettably in my case it did absolutely nothing - but then I am used to that!

    Rituximab is strong stuff as it is used in chemotherapy so you should read up and discuss with your Haematologist the implications of having this treatment.

  • Hey there. I did a combo therapy of rituximab & dexamethasone last August and have been in remission since. So over a year at this point. I showed no improvement after the first infusion and I believe once the dexamethasone was incorporated that's when things started to make a turn for the better. I had been on high doses of prednisone for a year prior and only had good results when I was on the highest of the doses. The minute we reduced my platelets did the same.

    Good luck with the infusion and please keep us posted. The first infusion be sure to take note of how you're feeling and if you start to feel congested or achey let the nurse know immediately. I had an allergic reaction during the first infusion so they had to stop treatment and wait a bit before starting again. But all went well after that.

    Best of luck!

  • As was said, it works for some wonderfully, and not for others. I'm also one it didn't work. I started at 39, then after the first I went to 100. Next week tho, I dropped back to 33. Nothing after that. I had a reaction the first treatment. Coughing, congestion in my head & chest, BP went very high. But after stopping treatment, giving more Benadryl, Tylenol, Steroids, & something for my BP, they restarted slower & stayed slow. No problem after that. It did take almost 9 hours. Each treatment after was slow also. I took Benadryl, & Tylenol afterwards also, thru the next day. Good luck to you, & I hope it helps! You won't know until you try.

  • I had the retuximab, but it do anything for my platelets, it only helped my arthritis in my knees, which was good for 4 years.

  • I had the Rituximab infusions over three years ago and my platelets have stayed up in the near-normal zone. The first infusion left me pretty loopy; fortunately I was warned that might happen and had a friend who took me home. The Rituxan *did* leave me fatigued, which happens to about 39% of people who take it. The haematologist said that the fatigue would fade, but it has never gone away. Still — I've gotten three years and four months with strong counts out of the Rituxan.

    And do tell us how you're doing!

    Ruth

  • hi,i had blood test due to low iron and when i got home from work doctor phoned me and told me to go to casualty straight away as my platelet level was 7,i had steroid treatment after hat and after a while they went up to 250,as i gradually came of steroids my levels went down to 30,this is when my hematologist offered me rutoximab,so i had the treatment every tuesday for 4 week and felt fine having treatment,my levels stayed in here 100s but hematologist told me it takes up to 3 months to start working,3 months have passed and i am going from 230 to 190 up and down so far it seems to be working,have next blood test next week and if still high wont have to see him and just have routine bloods done,it just depends on the person,its if you have a reaction while they give it to you,some people are of work but i went work through out the 4 weeks as i felt fine.hope you get on as well with it as i do