Churg Strauss syndrome that caused Mononeuritis multiplex

Last year November , I was diagnosed to have Churg Strauss syndrome . I have been on Prednisone since then, from 45mg to now 10mg. I was given Gabapentin since 3 Mar. I also on Gabapentin since 3 Mar. Also, I no just had two rounds of Rituximab Infusion done on 27 March and 11 Apr.

Yesterday told me that my liver test showed mild Liver damaged . This worry me.

Yesterday doctor suggested I should cut down my Gabapentin dosage to 300mg for morning and 100mg at night. I tried this last night, but the pain was unbearable that took another 200mg last night.

Can someone suggest any form of opinion relief instead of taking painkillers .

Thanks,

13 Replies

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  • Oh ya, I just had two rounds of Rituximab Infusion yesterday and hope to see improvement .

  • Does the hospital you go to have a pain management clinic or specialist nurse?

  • Yes. The pain Management doctor suggested to increased my dosage of Gabapentin , which I am not keen in doing so.

  • Not sure if this page from the website might help but thought I would share it. vasculitis.org.uk/content/d...

  • Hi Suzym2u,

    Thanks for your article. It's very useful.

  • Hi Thymery I also have CHurg strauss which left me with nerve damage in my feet. I take amitryptiline which helps with the pain. The pain did gradually get better. I used to take simple paracetamol in between pregabalin. Alternative therapies may also help with pain management - reflexology and accupuncture? Sorry to hear you are suffering and hope it gets better for you.

  • Thanks Katie18 for your reply. I am not keen in changing medicine because of all the side effects.

    May I know is your CSS cured and how about the numbness and pain in your legs, are they gone? If yes, it takes how long to cure?

  • I am afraid there is no cure for EGPA ( CSS ) but it is possible to control it. EGPA is extremely rare, around a 1000 recorded cases here in the UK. It is essential you see a doctor who experience and knowledge.

  • Hi Thymery I took pregabalin which is pretty similar to gabapentin - but low doses 20mg of amitryptiline at night too to help me sleep. If you have nerve pain it's worth asking your consultant about as it's the one drug that helped me with the pain and didn't seem to have side effects apart from sleepy at night when I needed it - and a bit sleepy first thing on a morning. I hate taking drugs too cos of side effects.

    It took a year before my nerves started to show any signs of growing back. But I made a remarkable recovery from severe foot drop not being able to hardly walk using all kinds of food aids and scooter - to walking reasonably well now four years later. So there is lots of hope - but it is a rather slow process.

  • Thanks Katie18 for your reply.

    I used Pregabalin before but switched to gabapentin because the Pregabalin is too costly. In fact, I have been taking it since I diagnosed with CSS. So, I will suggest to my doctor to change it back to Pregabalin when I see him on 25 Apr.

    Did you go for the Rituximab Infusion ? Web sites said this medicine seems to be able to cure CSS quite effectively and I hope to see improvement in a month time.

  • No thymery I had cyclophosphamide as rituximab wasn't as easy to get 4 years ago

  • I had cyclophosphamide for 5 rounds, but not effective , so doctor suggested Rituximab. This is very expensive medicine hope it will cure my sickness .

    Thanks so much for your advice.

  • Hi I had 6 rounds then aziathiiprine. Best of luck with rituximab - it has really good results for some people.

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