Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Share Information

dodabear Message
28 Dec 2009, 07:03 AM

Hello - I would be eager to share information and resources regarding Schnitzler's Syndrome. I'll check here often. I'm sure that if a few of us can begin comparing notes we can make some significant progress in ensuring earlier diagnosis in others and - hopefully - expanded treatment options. Thank you!
hvselr Message
24 Jun 2016, 11:42 PM

I just joined today. I see the last post was over 6 years ago. Are there still any active Schnitlzer Syndrome patients that would like to share information or experiences?
hvselr Message
26 Jul 2016, 08:12 PM

Nice to meet you dodabear. I've been experiencing a number of frustrations with treatment. I started on Anakinra about 1-1/2 years ago. It was great but after dealing with severe injection side reactions that persisted for 6 months my doctor change me over to Canakinumab. It works almost as well and only have to inject every 60 days but it's VERY expensive & my doctor told me that my white cell count and red cells are dangerously low.He's switching me back to Anakinra in a few weeks & I'm back on the prednisone until I start the Anakinra. I hate being on the prednisone! I've been looking everywhere for clinical trials but can't find any in the states although I did sign up for a clinical trial pool at OHSU.