I'd lost track of this thread for awhile, glad I've found it again and have caught up. I have some random thoughts and questions...
My ME/CFS specialist, after cinsulting with Afrin, has put a few patients on Gleevec and says they've done very well.
For MCAS testing, I've never had high tryptase, mostly high prostaglandin D2 and chromogramin A. Tryptase is typically high only in the middle of a reaction. Theoharides doesn't even recommend it anymore as its so hard to catch.
High dose IVIG is really useful. I'm ptetty sure you've seen the attached - Weinstock used 2g/kg which is a whopping amount. My doctor stsrted me at .75g/kg. I get it done at home by a nursing service with support meds to reduce my reaction and a slower drop speed and extra saline. I get Ativan, Toradol, Benadryl and Solumedrol with Benadryl, dexamethasone, Zofran, boswellia and curcumin afterwards. Can you share the case study and get it prescribed?
I'm allergic to corn, milk and gluten which makes most meds tricky. I've found that compounding them (and watching what they put in for fillers) and using the children's version or an injectible version works best.
You may find a POTS med helps. Pyridostigmine (Mestinon) has been a big help and I went through 4 beta blockers and carvedilol before finding Troprol XL finally slowed down my racing heart.
Now, I have some questions for you two and
@ClaireKnowles
I am to begin Rituximab in 2 months, the soonest they have space for me to do it. There was a long list of support meds most of which I'm allergic to, but I have solutions for all except Zyrtec, which I'm to take the day of and a few days after. I'm allergic to the fillers in all OTC antihistamines. The nurse said to skip it, but it doesn't seem like a good idea. I had a bottle of fexefenadine compounded for $400 which is ridiculous and I ran out. I currently take ketotifen and benadryl and Zantac.
Any thoughts on a H1 antihistamine that is milk and corn-free?
I know the infusion is fairly easy, but what changes may I experience after? How worried will I have to be about catching stuff from other people?
Is there a point one gets off of Rituximab and is well? My insurance denied it so I'm concerned about long term...
Any other thoughts or advice?
Thanks!