I’m not sure if anyone has mentioned it yet, but pretty recently (about 150 days ago) a drug called Xolair (brand name) has become the guideline drug for what to give urticaria patients that don’t respond well to the normal antihistamine treatments (i.e. doesn’t help much). It’s an injection that you get at the doctor’s office monthly. It varies on dosage and timeline, starting is 300mg at every 4 weeks. Some people go up to 750mg (pretty rare) and frequency of every 3 weeks.
I’m in no way related to the brand or anything. I just saw a specialist at UCSF dermatology, and she wants me started on it. And I am so excited after reading the research on it!
A hospital in Israel had 48 patients undergo treatment with it. If you want to google it, the title is as follows ‘Omalizumab for the Treatment of Solar Urticaria: Case Series and Systematic Review of Literature’
Originally it was thought I had SU, but turns out it’s just a stupidly bad case of cholinergic.
Anyways, this was over the case series of those 5 patients. But talked about the statistics of the total 48 that had different urticarias.
The amazing results (so you don’t have to read if you don’t want to, but you do you, fact checking is necessary with these diseases!) 79% had what was classified as ‘clincal improvement’, so they were either symptom free, or significantly better. The other 21% weren’t on the drug long enough frankly, the longest in that group was on 16 weeks, and from what I’ve found it takes anywhere from 1 month to 7 months to see improvement, so the group that saw no improvement is a bit questionable, as they likely may have seen improvement by now.
I don’t know how much you all know about success rates and drugs, but almost 80%?! That’s HUGE.
Ok. More good news though about it! Of the cases that had adequate data (33 of the 48, and were on it for more than 4 months, or saw immediate improvement), 52% of those (so 17 people) became symptom free!
I don’t know how bad you all are, but this has destroyed my life completely. And with the success rate this drug has at giving improvement, for me, it’s a no brainer to do it.
If you haven’t tried it. I’d talk to your doctor about it, I have high hopes for it, and I hope you all can get help from it to!
Also, in case you are wondering who I saw. It was a Dr. Botto in the dermatology department. She is pretty young, but very compassionate, and an incredibly smart woman. If you still don’t have an actual diagnosis, I highly suggest trying to get a referral to see her if you are on the west coast. It’s expensive (because staying overnight in San Francisco) but worth finding out what you really have. You’ll likely have a biopsy taken, and if you haven’t had one already, it’s huge and helping them figure out what you have.
I hope this all helps you! (And if you are in Oregon, seriously don’t bother with OHSU, useless. Get a referral to UCSF, you’ll be glad you did!)