Churg Strauss syndrome that caused Mononeuritis multiplex

[Thymery]

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,

[Thymery]

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

[Suzym2u Moderator Vasculitis UK]

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

[Thymery in reply to Suzym2u]

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

[Suzym2u Moderator Vasculitis UK in reply to Thymery]

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

[Thymery in reply to Suzym2u]

Hi Suzym2u,

Thanks for your article. It's very useful.

[Katie18]

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.

[Thymery in reply to Katie18]

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?

[Suzym2u Moderator Vasculitis UK in reply to Thymery]

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.

[Katie18]

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.

[Thymery in reply to Katie18]

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.

[Katie18]

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

[Thymery in reply to Katie18]

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.

[Katie18]

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

[Hidden]

This all sounds so familiar to me, unfortunately. Have had EGPA vasculitis for over 20 years. Am on Rituxan, although specialists just reduced the doses to a 500 mg infusion every six months to prevent relapses. No more Prednisone for me - it sends my blood sugar skyrocketing.

I've been on very high doses of Gabapentin to treat neuropathic pain/dysfunction related to vasculitis-induced polyneuropathy and a bout with severe seizures last April. Now I find out that Gabapentin is seriously toxic. Here is the link on this: wellnessresources.com/studi...

I am on a specific program to go off the Gabapentin (it didn't help anyway). Whoever prescribes this can help with titrating slowly off. Now I'm on no pain meds and remain on one anti seizure med.

I have liver damage and vasculitis induced Type I diabetes.

My recommendations? Be patient with drugs like Rituxan - it takes awhile to work, as I'm sure you know. My doctors prescribed every pain killer on the books for years until I got fed up and stopped taking them. I recommend careful anti-inflammatory dietary management, exercise and things like meditation/yoga. Ultimately they are the only things that really seem to help.