(Story starts at 1:45)
I never expected to try an immunosuppressant (and was VERY against it when I first started TSW) but after 13 months of Topical Steroid Withdrawal, I needed some relief. Dr. Rapaport has been consulting on my case, and super strongly urged me to start Cyclosporine. After 6 months of being on it, I don't know what I was so afraid of! I've had no reactions or side-effects to speak of. It's helped my symptoms maybe 40%, which is 60% less than I was hoping, but I'm still thankful for the relief I have.
One thing I forgot to mention in my video: Cyclosporine has REALLY helped the swelling in my lymph nodes go down! They have been so painful and cumbersome since December 2019, so it's nice to get relief!
Here's the link to herbs that can have negative interactions with Cyclosporine that I wish someone would have sent me sooner! Bookmark this list if you're on Cyclosporine or thinking about taking it:
www.hindawi.com/journals/jt/2...
Dr. Rapaport thinks Methotrexate and Dupilimab are ineffective and/or dangerous, but has had really good success with Cyclosporine on the worst 600 "basket cases" he's seen who have TSW. (Pretty much all of them are Clobetesol people like myself. 💔) Remember that all immunosuppressants don't act the same way on your body and aren't interchangeable.
The most exciting thing to hear from him is that there is NO Cyclosporine "rebound effect," like I had feared. I'm planning to stay on the Cyclosporine during the rest of my TSW and tapering off in maybe a year or two, (should I continue to stay side-effect free) but he says after that I'll taper off and NOT have a rebound. Good news for any of you who had heard of a Cyclosporine rebound too!
So, don't feel pushed into taking an immunosuppressant if you don't feel ready for it, but keep it in mind as something to either research, or keep in your back pocket if your journey and severe symptoms last longer than you feel like you can handle and stay mentally healthy. For what it's worth, Cyclosporine is on the list of 100 safest medicines in the world.
Jing over at @TSW_Trooper on Instagram also has a lot of thoughtful advice on TSW, and has a helpful article on her blog about immunosuppressants and TSW that you also might find helpful. The link to that is here:
decodingtopicalsteroidwithdra...
Have you been able to find other helpful videos or information on Cyclosporine or other immunosuppressants? Please comment a link to them below, and I'll add them to a playlist on my channel so we can help other people find reliable information to help make informed decisions!
#topicalsteroidwithdrawal #redskinsyndrome #RSS
#TSW #thisisnoteczema #immunosuppressants
#cyclosporine #methotrexate #dupilimab #dupixent #drrapaport
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