Hi everyone, I’m new to the group. Thank you for the add. I’ve had an underactive thyroid for 20 years and joint pain and stiffness for the last 2 years I was referred to a rheumatologist who I saw in October and he said he suspected I had Lupus (SLE). I started taking hydroxychloriquine and in November had a bit of a cold then I started to get hives (in pics) then angioedema then I collapsed and was taken to A&E. I was given adrenaline and steroids and kept in hospital for the next four days. Since then I’m taking massive doses of antihistamines and steroids and although my hives are better than they were, I’m still getting them every day. I’ve been to see the dermatologist today and they said that because they can’t get it under control they are putting me on cyclosporine. They don’t know if I had a reaction to the hydroxychloriquine or if it’s an auto immune issue. I’m grateful I’ve been seen very quickly and they are taking me seriously but I’ve read the side effects and I’m concerned. Has cyclosporine worked for you and what if any side effects have you had? Thanks for reading my story
Shahla Samreen Remove your chain
Claire Williams I have now, I haven’t worn jewellery or even much in the way of clothes for a month xx
Shahla Samreen My love for you .we can understand your pain . May God bless you health
Antonella Ballatori Forestieri I was prescribed methotrexate and plaquenil, but I believe cyclosporin was another drug that could have helped. Methotrexate helped me after 15 years of being prescribed lots of meds including steroids and xolair, which stopped working. I saw a rheumatologist /allergist in Denver that changed my life and have one in houston that studied with her at Baylor College of Medicine. I have Thyroid antibodies but have not been diagnosed with hypothyroidism, but I wonder if they are related. If you live nearby, I would be happy to give you the doctor’s names. I am so sorry for your suffering and I hope you find relief!
Claire Williams Hi Antonella, thank you for your message. I was wondering if methotrexate would help, my mum takes it for RA and doesnt suffer any side effects. Plaquenil is the hydroxychloriquine I was on originally for lupus so I don’t think they will prescribe that for me again. I’m glad you’ve found some relief after so long. I’ll be glad to come off the steroids, I’ve gained over a stone in a month. I’m in Wales UK, but thank you for the offer. I was 12 when I was diagnosed with hypothyroidism but was never told why I had it, it’s only been in recent years through research that I’ve realised it was probably caused by my immune system attacking my thyroid gland.
Ana Garcia Methotrexate is another she mentioned. My general doctor was going to prescribe that but instead I tried xolair through my allergist which made me worse than I was before. After five shots the derm. Put me on plaquenil and that has worked well for me.
Carol Mark Rollo Hope you feel better soon
Claire Williams Thank you
I’mnotAsparrow I’mAboy Xolair?
Laney Pollard Cobb Claire it is so frustrating. I have been there before. I am dealing with a them too. I took cyclosporine once it helped but my blood pressure got too high. Dr made me stop it
Claire Williams The Drs haven’t mentioned Xolair, maybe that will be the next step if the cyclosporine doesn’t work. If I start showing signs of nasty side effects I will mention it. Thank you all xx
Carla Gregory Maxwell I had great success with cyclosporine. Moved on to xolair now but cyclosporine gave me enough relief and normalcy to have a great wedding.
Claire Williams That’s great to hear. Congratulations on your wedding. Thank you for replying xx
Patty Stuart Stach Hypothyroid, Hashimoto disease, very connected to urticaria. Plaquenial put me in hospital. Stroke like symptoms after first dose. Steriods make me worse can’t take them. Have taken prograff , Dapsone, and cellcept helped for awhile. Can’t ever take predisone again. Made my hives worse and worse as they gave me more and more.
Poupoune France I am so sorry for you! I know how you feel. I had hives for a year and they finally disappeared. I still don’t know why they came in the first place. They did so much blood work and never found anything. So have hope!
Emilios Christodoulou Welcome, this community is awesome. Hope you find the right treatment plan and start feeling better soon!
Abi Spillett It was a long time ago but I have had it twice. Worked the first time really well but I did get side affects, sorry I can’t remember what, had a long break, tried it a second time and didn’t work. My gut instinct is accept cyclo because the quicker you can get into remission the better. You might not have to be On it for long
Rachel Ann Walmsley I was in a daily cycle of hell last year and xolair didn’t work but ciclosporin did and quickly – I am hive free at the mo on 75mg twice a day (down from 150 mg x 2) and we are trying to reduce further. Liver function gone down but still ok and mild headaches but buzzing that I have a life again! In my opinion worth the risk xx
Claire Williams I’ve had no internet for a week so have been unable to reply. I would just like to thank all of you for replying to me, I’m glad it’s worked for some of you. I started on 150mg a day 11 days ago and saw no change, I increased my dose to 200mg on Monday and still no change. I’m hoping it’s just taking a while to get in my system. I’m back at the hospital in 2 weeks where I’ll ask about Xolair if I’ve still not seen an improvement. Lots of love to you all xx