Churg Strauss- alternative treatments??

[vivavida]

Hello everyone

Diagnosed 4 yrs ago with CS. It is non severe- so far. Long term pred treatment has resulted in osteoporosis and paper thin skin. I have periods without- currently 6 weeks but now symptoms of extreme tiredness, joint pain and sore eyes all back. Have expert consultant who says getting CS patients off steroid is huge challenge. Tried Mycophenolate but not successful. ANCA always positive. Mostly ESR and CRP are normal. Sometimes wonder if I really have CS when I read posts here.

I would love to know if anyone has benefitted from any alternative therapies? About to try acupuncture. Have a rich anti inflammatory diet.

Would be very grateful for any advice/ideas.

Many thanks

[Suzym2u Moderator Vasculitis UK]

Could I just ask where you are seen for the CSS?

[vivavida in reply to Suzym2u]

Hi Suzy- Addenbrookes Cambridge.

[Suzym2u Moderator Vasculitis UK in reply to vivavida]

You are seen by one the best hospitals for treating CSS in the UK. You are very rare, there are about 1000 recorded cases of CSS here in the UK , out of a population of 65 million. Have you discussed your concerns with your consultant ?

[vivavida in reply to Suzym2u]

I am! I'm very fortunate. Yes I have but as I said- it's his biggest challenge too- coping without pred

[Suzym2u Moderator Vasculitis UK in reply to vivavida]

Have they tried an alternative to Mycophenolate?

[vivavida in reply to Suzym2u]

No - have lived in hot countries for many years so skin cancer concern.

[Suzym2u Moderator Vasculitis UK]

Have you ever contacted the helpline at all? John is always ANCA positive and has GPA.

[vivavida in reply to Suzym2u]

No but I will! Thanks Suzy for your kind replies! Number on website?

[Suzym2u Moderator Vasculitis UK in reply to vivavida]

03003650075 😊