Hey guys, I’m new here. I’ve been battling this stupid condition for about two years now and Xolair has just failed on me. The immunologist wants to try Ciclosporin. Anyone had experience with this drug? My hives are getting stupid! Thanks guys
Sue Elshire Hargrave I’m so sorry! Mine are also very recalcitrant hives, and we’ve been working for 14 years to find a way to at least just control them, and that hasn’t happened yet. I tried cyclosporine at different amounts of meds, and it didn’t help me HOWEVER, the good news it that it helps SO MANY people! My doctor says she always starts with Methotrexate, as that seems to be the one most of her patients respond to, and then she moves to cyclosporine. All of her patients have resolved with medication, except for 2 of us. I’ve done every diet, and with total intention, over the last decade +, and they haven’t done a thing, as mine is thought to be autoimmune, and even that isn’t a sure thing – they think it is autoimmune due to tests that say there is an E IGE issue. Dr. Fett says that this is a theory that they are going with at present, and research is leaning that way in testing, however, even that isn’t absolutely certain. It’s a disease that needs so much more testing!!!
Lisa Springett Cyclosproine worked well for me me xx I now have the jabs every 4 weeks and 25mg Cyclosproine works we’ll
Lisa Costantini Zuli How many shots of xolair did U get?
Yvonne Visée Clohessy I’ve been on cyclosporine for over 2 years and have been hive free except when I get to the lowest dose, then we start up again. Xolair didn’t work for me. No other side effects.
Lisa Springett It am on 16th shot X it took 10 before it started to work xx
Kirsty Waight I have 100mg cyclosporine twice daily with injections of omalizumab every four wks and rarely get any hives. Doesn’t change the pressure urticaria or angioedema but it’s changed my life!
Kristen Soderberg I was on it for awhile. We don’t think it really helped. I also grew white hair all over my face
Sue Bellamy I have been on cyclosporin for 7years with no outbreaks unless I stopped it! But recent recurrent infections, especially chest. Now about to have my 6th and last injection of omalizumab – I don’t feel good on this drug, hives and itching better but still there. I wouldn’t worry about trying it and I do hope it works for you. Ps no excess hair growth in 7 years
Lara King Mine or yours?! I have EDS so my feet are odd angles most of the time 😂. I’m glad this drug works for the most part, but I am having it as an IV infusion? I have no veins left so have to get a central line for it 😑.
Another question, sorry . has anyone had this on their feet so bad that they’ve had to take to a wheelchair? My EDS makes my joints unstable anyway but when these hives get on my joints then it causes dislocations
Tracee Smith Cyclosporine was like a miracle drug for me – felt fantastic, felt normal – but. After about 3-6 months my kidneys/liver started to react adversely to the drug so I had to stop taking it. About 12mths later doctors found a melanoma on my shoulder – cyclosporine increases the risk of skin cancer. I have been advised by several doctors that I can never take any form of immunosuppressants again. I spent 6months on Xolair – didn’t work as well as the cyclosporine, gave me migraines and costs me $1000/mth. So I’m back to antihistamines 😕. I have deferred pressure dermatographism. My advice would be to try everything presented to you but always listen to your body and have regular medical check ups as these drugs can be nasty – good luck
Libby Jones I’ve been on cyclosporine for 4 years with no problem. Give it a try, make sure to get your blood work done while on it.
Emily Gallagher Cyclosporine was also a miracle drug for me. Gave me quality of life back and eventually slipped me into remission. Its defintely worth a shot (it only works with people who have autoimmune urticaria – which is most of us).
Adele Counter I tried Cyclosporine but sent my bp up I’m now now on methotrexate 15mg and I’m hive free .I have my life back it’s wonderful good luck.
Lara King Ah bluiurgh. I’m on Prednisolone/prednisone 40mg as its so bad right now and I feel like death. I have cramps in my legs, adrenal pain, flu like symptoms and I’m irritated!! I do , however, have tonnes of energy and I’m cleaning everything. Oh and I’m still not hive free
Belle Creolina Oh no! I’m so sorry!