Churg Strauss Struggles

[meganoscar123]

Hi everyone, I know I have dropped off this site for about a year now but after finally being diagnosed with Churg Strauss last October through a private referral to a rheumatologist in London my life has been a roller coaster!

My asthma consultant at The Brompton consistently refused to believe I could have this complication connected to my Eosinophilic asthma and refused to refer me on the NHS instead believing getting me off Pred altogether was the answer! Luckily as my health was deteriorating so rapidly I declined this option which probably saved my life as without high dose Pred or chemo drugs to keep it in check CS it is universally fatal !

After seeing a world expert on CS privately last Autumn I was started on Methotrexate immediately but 7 months on I feel no better. I still have terrible sweats, flu like symptoms, excruciating joint pain (I now walk with a stick) so much so that I am left now with only ketamine or lidocaine infusion options (allergic to pure morphine) Fentanyl and paracetamol only take the edge off. Even Macmillan can't help! My kidneys are now not in good shape either with blood and protein in urine and low potassium levels.

Despite all this my rheumatoloigst feels as my Eosinophil levels are down, but they are not at zero, everything is hunkey dorey. I am seeking a 2nd opinion this week as I am unconvinced. Wondering is this as good as it gets for us with this disease? I also know that Methotrexate is only 30% successful in achieving remission but it is cheap and easy to administer as tablets at home so NHS preferred. Cyclophosphamide is gold standard treatment but not sure if OK with kidney issues? I know it is a difficult disease to A) diagnose and B) treat but does anyone have experience of being told the same by their consultants that this is what remission may look like?? Any other peoples experiences would be appreciated.

[sassy59]

No experience of this at all but l just want to send hugs and good wishes to you. Xxxxx

[meganoscar123 in reply to sassy59]

Hi sassy59 so good to hear from you and apologies for being off the radar so long! Hope all is OK with you??

[sassy59 in reply to meganoscar123]

We are ok thanks meganscar. It's good to see you again and l will be thinking of you. Do let us know how things go please. Take care xxxxx

[meganoscar123 in reply to sassy59]

Thanks sassy59, will do I will let you know how seeing other rheumatologist goes on Thurs. take care too xxxx

[mobile1946]

you poor baby ,sending big hugs to you, my troubles don,t seem so bad now after reading what you are going through god bless you .

[Ergendl]

((((Hugs)))) meganoscar123 .

[peege]

Big hugs from me too, wish I could offer something more useful to you. ♥️ 🌻🌼🌸🌺

[meganoscar123]

Hi to everyone who gave me such kind responses, you are a wonderful bunch, lifted my spirits!! Had my kidney scan at hospital this morning and more bloods done as my potassium level still falling despite supplements and seeing another rheumatologist later today so maybe another opinion and or answers would be good??

I know Churg is rare and so few of us navigate it successfully but guess it shows that much more research and knowledge is needed for these autoimmune diseases. Perhaps my legacy may be to inch forward the field of treatment as I am my best advocate and insist on being the 'squeaky wheel' with all these consultants (under 5 currently!) I always question and probe rather than just accept what they like to throw at me next!

Hoping you are all doing OK, many hugs