Steroid pulsing
Bit of background, I’ve been dealing with cholinergic urticaria without visible hives for about a year now, and it’s been incredibly difficult to manage. I finally was able to get onto Xolair after trying pretty much everything, including multiple antihistamines, probiotics, and a ton of different supplements, none of which really helped. Weirdly, the only thing that consistently gives relief is extremely hot showers which makes me have a reduction of symptoms for about 8-12 hours otherwise I get constant extreme itching and stinging throughout the day when my body gets slightly heated. I also have been getting folliculitis starting with my CU that leaves quite a noticeable scar when going down.
I’m currently 2 months into Xolair and have worked up to 600mg every 2 weeks (starting from 150mg), but I still haven’t noticed any improvement. My immunologist said it’s very rare for his patients not to respond at this dosage and duration, so he’s now recommending steroid pulsing with 500mg methylprednisolone once per month for a maximum of 6 months.
Over the past year I’ve also done 3 courses of oral prednisone (40mg):
- First course cleared symptoms almost completely for about 5 days
- Second course did basically nothing
- Third course reduced symptoms by around 50%
I’m mainly wondering if anyone here has managed to find long-term improvement or remission from high-dose steroid injections/pulsing, especially in cases where Xolair didn’t work. I hear people take longer to respond to Xolair so I'd still be on high dose Xolair while getting steroid injections. Would really appreciate hearing other people’s experiences.
Note - Dupixent isn't available for funding in my country as well as Rhapsido and rinvoq (takes a battle to get prescribed for off-label).