Hi all

Our 13 year old daughter starts with Rituximab on Tuesday. For the regular contributors to the forum you may recall that she had an incredible response to Prednisolone with a jump from 19 to 208 in the first week then to crash back down and remain low again. A top up of Azathioprine made her feel absolutely dreadful.

What should we expect from the first session of the IV.

As ever, all views are much appreciated. 🙂

7 Replies

  • I've done well on Rituxan. I know not everyone responds to it, but my platelets have been around 200K for almost four years now. It causes fatigue in about a third of patients, but I believe most get over it after a few months. My understanding is that some people respond to it quickly while others see a slower improvement in their counts. I haven't been thirteen for a long time, and I have no idea if age makes any difference, but I hope your daughter gets better soon.

  • I have gone the entire route so to be honest not sure which did the trick l have also had counts over 200 for over a year now...but again did the prednisone, splenectomy, revolade, IVIG and lastly rituxamab so not sure if it was the rituxamab or a combination of other treatments but things have been good and l thank god. ..You will get there as well just keep the faith and god bless .

  • I had a great response to rituximab combined with high dose dexamethasone. What to expect for the first treatment? Well, make sure your daughter pays attention to how she's feeling. And if anything starts to ache or if her throat starts to feel tight or scratchy tell one of the nurses. Apparently the first time Rituximab is given the patient can have an allergic reaction. I did, and they just stopped the IV for a bit and then started it up again a bit slower and that did the trick. After the first treatment I felt exhausted and headachey. The good news is that the remaining three treatments went off without a hitch and my body started to get used to the drug. I felt rather good after the other treatments.

    Keep us posted and I'll say a prayer for you and your daughter. I have a check up Wednesday and assuming all goes well I'll have had a count over 200k for about 16 months straight. Here's hoping it does the trick for your daughter as well.

  • Retuximab didn`t do anything for me in my count, it only helped with the arthritis that I had in my hands and knees, that was 5 years ago, it never came back.

  • i do hope your daughter gets well soon this is no age to have a condition like this

  • So true. Its age to live life n having new dreams .Unfortunately its not a choice but helplessness of parents before this disease .

  • Thank you for advice and support everyone. It's much appreciated 🙂

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