I am now 5 months into a treatment resistant flare

Not going away!! I’m now 5 months into a treatment resistant flare.
Tried:
Fexofenadine 720mg a day , Ranitidine 900mg a day , Chlorphenamine
Promethazine , Montelukast , Omalizumab , Prednisolone , Ciclosporin
Myclophenolate Mofetil

I’m looking for more options.? Feeling rather defeated!! I’m out of the hospital now. Although I had to stop the Myclophenolate so I’m covered once again! They found that I have osteoarthritis in both hips while I was in..so I’m starting hydrotherapy. All the antibiotics have killed all the bugs in my mouth so I have a really bad case of thrush in there. So sore! Thank you, its heartwarming to know people out there care


Discussion


Emily Gallagher Damn Xolair?

Lara King AKA omalizumab it worked for 4 shots then stopped

Heather Rubin Kelsey I am SO, so sorry. Xolair did not work for me until the 3rd injection. If it stopped working I would be devastated. What about Plaquenil?

Emily Gallagher Lara Oh, thats a nightmare. Have you tried alternative medicine? I know its desparate but sometimes they can help.

Pam Hutchins Xolair took a few months to start working for me. Then stopped for a couple/few, then started again. No problems for a year now. Possibly try again?

Stephanie Bradshaw I’m just reading an autoimmune book, and trying fix all the other things, and so have stopped cyclosporine (which was the only thing that works) and now back to antihistamines 1st line and trying homeopathy alongside. Being particular about food intake and sleep and hoping it will go. Hang in there – my best antihistamine for me is Xyzal, levocetirizine (in case you have not tried), and I use a soothing gel/lotion to cool the heat down to get some relief. Also I use Atarax in the nights, when I need to sleep vs. itch! Get well soon.

Laura Deegan Hugs and understanding

Doug Dykes Oh I know what you’re going through When they finally do go away it feels so good.

Janice McClurg Ask for Xolair

Michelle Donnellan She on it Omalizumab

Michelle Donnellan How long have you been on Xolair for? It can take months for some people.

Alissa Thompson Have you tried plaquanil?

Ana Garcia Hidroxychloroquine? Methotrexate? ?

Sai Sri Xolair .. It might take more shots for you.. I Suggest not to stop till you get better. I don’t know how ur baring this.. I use to faint

Deidre Brown-Kennedy Have you tried a combo of ceterizine (zyrtec) and allegra and ranitidine with benedryl (liquid not tablets and at night when you’re home) thrown in the mix? That combo works pretty well for me. I think layering the antihistamines is what works. I find as long as I take the combo during the day and the benedryl at night I can manage.

Amanda Heft-Mclean I had hives from January 2008-December 2009 I was on prednisone (the only drug that kept my hives away) when I found out I was pregnant I went off prednisone and the hives didn’t came back. August 2010 I had my daughter and breastfed her for a little over a year. Shortly after, I became pregnant with my son after his birth Sept 2012 he never took to breastfeeding but still no hives. Then in 2013 I became pregnant with the last of my children. He was born July 2014 and I breastfed him for a year, still no hives. 8 months after I finished breastfeeding him I break out in hives. I tried all types of medication. Doctors did not want me on prednisone long, which sucked because again that was the only medication that kept my hives away. I was put on 2 Arieus, 3 Sulfasalazine in morning and 2 Arieus, 3 Sulfasalazine at night. I was still breaking out a bit so I asked another doctor if I could try adding birth control as well (seeing as when I was pregnant and breastfeeding I had no hives. I figured it could be a hormonal issue). So I was also taking Lolo birth control. I broke out in a drug rash and was told to go off the Sulfasalazine and I did. I am currently on 2 Arieus and 1 Lolo in the mornings and I haven’t broke out in hives since starting the birth control.

Maria Edwards Xyzal along with ranitidine works for me together I feel your pain. Someone just told me about an app food tolerances. I am going to try eating a low histimine diet. I didn’t realize everything I was eating is in the red! Maybe that will help?! Something’s gotta give!! I was on predisone but it’s really not good to be on long do Drs took me off.

Sue Elshire Hargrave I am so sorry you are having these issues. I can totally understand! I see you already tried Xolair/Omalizumab, which helps so many, but I wasn’t helped by it, either. I am 14 years in, and nothing yet has worked – you have many things that have not been tried, so ask your doctor to find other possibilities for you! The good news is that most people resolved quite quickly, ( in “urticaria time .not quick enough!)

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