RA for 25 years, on hydroxychloroquine at the moment. Have severe chronic neutropenia for over a year now. The rheumatologist wants to put me on one of the above drugs in the hope it will help with the neutropenia. Whether it will or not is uncertain, they are running out of options for me but said as things are i am walking a tightrope and at significant risk of severe infection. Already had neutropenic sepsis once. Cant tolerate neupogen which is the usual drug for neutropenia, it makes me so ill. Was on methotrexate about 20 years ago but came off it because it scared me. What decision do i make now. Could really do with some thoughts on this from people with more experience than me who have used these drugs. Rheumy said i could go on whichever i want to but cant say if it will improve my condition or make it worse! Catch 22.

12 Replies

  • Hi I have been on Methotrexate for about 2 years and so far doing fine. I am sorry I dont know anything about Ciclosporin. So I am not really very much use to you. I do hope you get some more useful advice and that you fine something to help you with this neutropenia.

  • thankyou sharon, i appreciate your input.

  • What a horrid dilemma to be in, and a shame the docs don't have more detailed advice for you. When you were on MTX did you have any problems with it? And what was it that scared you? As maybe trying something familiar might be easier than something new? Either way I'm sure you'll be we'll monitored so they will keep a close eye on the effects. But good luck. Polly

  • Thanks Polly, yes it is difficult to know what to do. Apparently ciclosporin has been about a lot longer than MTX but not used as much these days.

  • I have been on MTX ( tablet form)for 6 years and I have been really lucky, because I have never had any real problems with it (touch wood). Sorry never heard of Ciclosporin, but I hope it is a good alternative to MTX.

  • thanks for taking time to talk to me.

  • ciclosporin is an immuno suppressant drug.. usual/ original use in organ transplants now uses for ra and some skin conditions.. needs regular monitoring

  • thanks summer, yes the doc did say it is used in organ transplants. The nurse said they would not be contemplating using these drugs on me if they did not think it was necessary for my condition.

  • not suitable if you have high blood pressure x

  • I have tried both. Came off mxt due to side effects. Didn't have any with ciclosporin but it didn't help my RA enough so on another drug which I have started today

  • I don't know enough about this but MTX by injection has worked very well for me so far (18 months). Tilda x

  • thanks everyone, i will try to make a decision. xx

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