Hi all🤗 My Rheumy has just started me on Cyclosporin 150mg a day. I was wondering if any of you are on Cyclosporin and If so, how are you managing on this? Side effects etc.
Thanks in advance.
Seff. X
No, but I'll be following this thread, as it's one of the options on the agenda (in eyedrop form) for when I next see my ophthalmologist in a couple of months.
My Ophthalmologist put me on Ciclosporin eye drops 3 years ago, which have helped with my dry eyes. I have dry eyes because of Sjögren's and other things.
I haven't taken it orally. I will be interested to know how you get on too. Good luck
Thanks for your reply.
I have read all of this information prior to taking this drug. But i am interested in personal experiences.
Thanks again.
Seff, are you also on hydroxychloroquin ? Were you ever on methotrexate?
After 3 doses of metho (7.5 mg a week) I developed severe bronchitis and urine sample showed infection.
​at my follow up visit to rheumatologist yesterday she laughed when I told her I had stopped the metho after my infections .She said "7.5 mg is nothing and its just coincidence you had these infections'"
I live in the middle East at the moment so am not exposed to the viruses associated with cold weather and last picked up bronchitis 11 years ago at a party with visitors from UK .' I cant even remember when I have had the flu.
​So I would be very interested to know how you get on with it especially if it affects your health.
Hi🤗 thanks for your reply. Yes I am on Hydroxychloriquine 100mg/200mg daily and have been for 18 months or so. I have pulmonary sarcoidosis. Lungs/lymph nodes. Fibromyalgia and Sjogrens. Before I actually stasrted on cyclosporin i had "education" and they did mention lots of infections, shingles etc because of the dampening of the immune system. I have never been on methatrexate.
Thanks
Seff.
ciclosporin sounds quite a heavy med then. I was also diagnosed with Fibro but I think its all SS related (so didn't take meds for Fibro ) Maybe I am wrong and I could have that also, but just pressing some points like elbows ,shoulders, ankles and diagnosing Fibro seems a bit ....
How was your sarcoidosis diagnosed? the Total Pattern blood test with markers for different autoimmune diseases?
Hi, I was diagnosed with sarc by default. I went for a scan on my abdomen area and the scanner went higher up and notice I had multiple nodules in my lungs. So i had VATS surgery biopsy and from that sarcoidosis was diagnosed and treated. Then along came fibro and sjogrens etc etc. Apparently it is a pattern with sarc patients.
I have high ESR levels in my blood and have had for 3 years which determines inflammation somewhere in your body.
they do say if you have 1 autoimmune you are likely to get more.
​My sister wasn't diagnosed with sarc until she had Bell's palsy...very traumatic for her and family. By then she also seemed to have small 'lumps', on her cornea. This was in the early 80s and I suppose Drs were not aware of many autoimmunes
I have been on Restasis (cyclosporine) for my dry eyes for 7 Years now. It has helped me tremendously. Some people say it burns when they use it, but it’s never bothered me. I’m sure I have Sjogren’s but I never had the lip biopsy done. My doctor said it was not always conclusive. My blood work is also negative for Sjogren’s, but I am being treated as if I have it. I am on hydroxycloroquin, which has made me feel so much better. I haven’t had any side effects to The cyclosporine . Hope it works for you.
Thanks Christina. I have sarcodosis lungs/ lymph nodes, fibromyalgia and Sjogrens. My sjogrens was diagnosed before lip biopsy but after the biopsy cofirmed if that makes sense.
Thanks agsin x