@ers12345 I’ve been on it for 10mos for very similar reasons, I’m on 1000mg twice a day. I was diagnosed with Antisynthatase PL7 and dermamyositis and it was attacking my lungs. It turned into pneumonia before knew what was going on and it got pretty scary there for a few months. Honestly I was nervous to go on cell cept as well but, it turns out it’s not that bad. Because of the immune suppression I am more intentional about getting my vaccines, masking up when I get on a plane and wearing sunscreen. I also got a referral for Dermatologist and see them once a year to do a full body check(the melanoma risk). I get my monitoring labs every 3 mos and my numbers have all been in normal ranges. In fact, it was until I came down the prednisone that my labs started stabilizing. I will say the steroid withdrawal once I got below 5mg wasn’t pleasant. But it only lasted a day or two. I still travel , go outside(I do not sunbathe), and largely have been able to live a normal life. Wishing you all the best! I know starting a new med, especially with the warnings this one comes with can be scary but you got this!
@rbear thank you for sharing your story with me and that you have had a good transition to the medication and that it is helping. Most importantly, it’s helping
you !!
It is very scary to give up the sin, but is it safe to say that as long as I use factor 50 - and reapply every 2 hours and cover as much of my among with long pants and light long sleeves that I will be okay.
Would you ever swim in the ocean or wear shorts in summer / Spring days.
I have a dermatologist that I will start to see once a year to make sure I’m okay with any sun damage. Am I over thinking g this? I am also nervous of the initial side effects and just hope they don’t hit me as hard.
What were you side effects once lowering away from 5 mg and how long were you on the steroids? I’ve been on them one and off since September and fully on them at 20 mins since February and I’m currently at 7.5 mg and feeling stable. My doctor wants to get me on medication to avoid a flare up and having it affect my lungs with permanent damage.
It’s nice to know I’m
Not alone. Thanks for responding to my post. 🙏