Churg-Strauss and treatment

[Maudy1]

I have just been re-diagnosed with CSS having been treated specifically for GPA (Wegeners) for nearly 3 years, although I think I may have some cross over. I am on 6 monthly Rituximab but this has not controlled my symptoms well enough nor allowed adequate steroid reduction so I am trying Azathiaprine along side it. I was wandering if anybody has experience of both for CSS and had any success?

[Suzym2u Moderator Vasculitis UK]

You are not the first to be diagnosed with WG before finally being diagnosed with CSS. We know someone who was diagnosed with WG for 4 years.

We also know someone else who was given Rituximab to treat the CSS, so will ask if they were also given Azathioprine. As I understand it Rituximab is not always successful for treating CSS but has been successful in a few cases. I believe there are different drug trials taking place at the moment for treating refractory CSS but only in the hospitals where the funding is available. I wil try and find out more for you

Susan

[Maudy1 in reply to Suzym2u]

Hi Susan, thanks for coming back to me. I have been to Addenbrookes and understand there is a drug on trial at the moment and they will know if they can use it next year. If you could find out from other's if a combination of Rituximab and Azathioprine has helped that would be very useful. Many thanks

[Katie18]

I have CSS and was treated with high doses of steroid on a drip, then cyclophosphamide for 6 sessions and then 200mg aziathioprine alongside 30mg steroid a day steadily reducing. IT wasn't very pleasant but worked. I was treated with the same without the cyclophosphamide after a flare last winter.

[Maudy1 in reply to Katie18]

Hi Katie, can I ask are you still on Aziathioprine and what level of steriods are you on? Do you have ongoing symptoms or have you managed to achieve complete remission? Thanks Sally

[Maudy1 in reply to Katie18]

Hi Katie, sorry to bother you again but I was just wandering if when you first start Azathioprine you have a bit of reaction - I get worse sinuses, slightly wheezy and a bit itchy. This is very similar to my normal symptoms so difficult to know but it definitely makes it work - I'm hoping it will calm down. Thanks Sally

[Katie18]

hi maudy I dont think you are in remission until you have been symptom free for a few years. im currently on 200mg aziathioprine - quite a high dose as my consultant believed I had s flare because they reduced my steriods and aziathioprine too quickly at once last time. I expect to be on it for anotther 3 years. im also on predisolone slowly reducing at 4mg a day st moment. Hope to be off this in about 6 months but see how it goes. ive got nerve damage and so will always have problems with my feet and some pain. i also have asthma now and suffer from fatigue and off days and prone to infections. But reasonably OK.

[Maudy1 in reply to Katie18]

Thats good to hear, I am struggling to get my steriods down, still at 19mg and nearly 3 years in. I suffer from sinus problems and asthma and some all over body pain but am hoping this time with the Rituximab and Azathioprine i will be gradually be able to taper.

[Katie18 in reply to Maudy1]

Best of luck Maudy - when I reduce I tend to do a week reducing every other day. I have also reduced steroids by half getting a tool to cut tablets in half from chemist - that helps.

[Rita83 in reply to Katie18]

Fatigue and nerve and muscle damage can really be a big problem even after remission,

Rita

[Maudy1 in reply to Rita83]

My main problems are sinus related, asthma, skin flushing/itching and I just can not reduce my steroids. Hopefully I will one day.

[Rita83]

When I was diagnosed with Churg Strauss there was a little doubt as to whether or not it might be Wegener', Granulomatosis. This was not thought then (27 years ago) as the treatment was the same.

[Maudy1 in reply to Rita83]

Which treatment did you have and are you still on any medication? Thanks Sally

[Rita83]

Twenty-seven years ago I was treated in St Thomas's Hospital, London with Azathioprine and prednisolone very successfully. Eventually I reduced to 1mg Prednisolone but problems returned about 4 years ago and I had to change hospitals. I then took both drugs again in higher doses but have now reduced to 25mg Azathioprine and 2.5mg Prednisolone.

Those are the only 2 drugs I have taken for CSS. I was told initially that the treatment is the same for WG and CSS but I do not know if that is still the case.

[Maudy1]

Thanks, hopefully I will get mine under control eventually. I hope you continue to do so well. Thanks for emailing me. Sally

[Rita83]

27 years ago,having been diagnosed with CSS I was transferred to St Thomas's, London, where I was told that there was a possibility that I had Wegeners Granulomatosis but it was purely accademic since the treatment was the same.

Then 4 years ago, I had a relapse and, although it appears that there are now several different treatments, I am being treated at the Freeman Hospital in Newcastle with azathioprine and prednisolone, as at St Thomas's. This treatment seems to suit me. No other medication has been offered and I am content with my care.

Unfortunately, none of the GPs at my surgery knows about CSS so my 'problems' are not taken seriously but I am very fortunate in that I can contact my consultants at the Freeman if/when I need to. Their care is excellent.

[Skipper55]

Maudy1 I am on the same treatment for CSS , I have been on it a month and I feel terrible , It is a synthetic feel a real weird feeling , its supposed to slow the gut down and reduce pain in most areas including facial and give you more energy but to my mind , I am fuzzy in the head cannot think clearly and for pain reduction it has had no impact. These drugs have been called the new great treatment , its not worth a bar of soap .