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Polycythaemia RV. I have been offered Rituximab.

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jim27451
jim27451

I am sure I posted this a couple of weeks ago but cannot find any trace so here goes again. I live in the UK. I have been on hydroxy carbamide for some time but have have been plagued with problems especially itching. My consultant offered me Rituximab as an alternative. She said it is self administered once or twice a week by injection. I said I would do some research and get back to her. I understand that Rituximab costs more than Hydroxy carb but is half the price of Jakavi. I would greatly appreciate any advice or experiences from any polycythemia RV sufferers who have tried Rituximab.

0 likes, 4 replies

4 Replies

  • peter98873
    peter98873 jim27451

    Posted

    Hi Jim,

    Rituximab is seemingly used to treat severe active rheumatoid arthritis where other drugs have not proved successful in treating this complaint.  It is a drug I have not come across before with PV etc.    Apparently patients should receive premedication before each dose of injection.  This preparation can be prescribed to treat relapsed  chronic leukaemia.  Really, the best thing you can do is to contact your doctor and query his reasons for suggesting this.   There are other preparations available through your haematologist that can be prescribed to treat PV but it will be necessary to clarify the situation first.  Jakavi is the trade name for Ruxolitinib which is word similar in context to Rituximab but as far as I am aware , its not used as a substitute nor to treat MPN's.   Maybe an error has been made?   Let us know how you get win.  Best wishes.

    Peter.

    • jim27451
      jim27451 peter98873

      Posted

      Peter, thanks for your reply. I am sure that my consultant said rituximab and not ruxoltinib as I wrote down the name and even asked her to spell it (I appreciate the similar names are confusing). She was adamant that it is in self injection form. The Cancer UK web site mentions it is being trialled. Again I have not heard of anyone that has been prescribed it but is being trialled for PRV but am very keen to hear from anyone who has tried it especially after using hydroxycarb. In a previous posting I said I would like to be on Jakavi aka ruxoltinib but know the NHS will not pay for it.
    • peter98873
      peter98873 jim27451

      Posted

      Hi Jim,

      Thanks for your response.  I was not aware that Ritumixab was being researched for MPN disorders.  I have re-checked but I will raise it with my Haematologist next week.  All the information I can find does not relate these matters.  This drug is used to treat lymphomas and leukaemia in conjunction with certain other medications and several appraisals are being carried out but no mention of MPN's.  Suggest you contact NICE, they have a web-site of same name, and see if you can find out more.   Maybe your situation is a little different to those with MPN'S.  Will let you know if I learn of anything further.

      Peter.

  • peter98873
    peter98873 jim27451

    Posted

    Hi  Jim,

    Just to say that Ropeginterferon and Ropegasys are intravenous drugs that are used to treat Polycythemia etc.  You will need to discuss these with your Haematologist as they are prescription only drugs.  I know of only one other patient on this forum who is clued up on these particular drugs.

    Peter.

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