Linking you to resources and support in the lung cancer community!
I have never been on steroids for that long of a period so I wish I could help. The longest I have ever been on them was 3 weeks so I wish I could help with the side effects withdrawal. I can only imagine knowing about steroids that it could take a few months to get out of the system. Even when I was on it for 3 weeks the doctor waited at least 2 weeks after I am off of them to do anything else to get them out of the system. So I can only imagine at the dosage you were at and the long period of being on them, it will take time.
Jen, what dosage were you on and how often did you take them? I only took steroids the day before, of and after my chemo infusion. Is there a reason why you're still on them? I know they have to wean you off and sometimes have to increase the dosage again and then start weaning a second time. Wishing you the best. Take care, Judy
My mom has taken the usual decahedron with her chemo but also took it to control brain swelling after a gamma knife. She ended up being on them about 6 weeks. And then the weaning process began, and she was weaned really slowly due to the duration and amount she was on. The effects were devastating- all the usual-- buffalo hump, moon face, trouble sleeping, etc. but she also developed severe myopathy (muscle weakness) and ended up in a wheelchair. Had we known she would react that way, we would have demanded she wean off earlier, but the docs were concerned about swelling in the brain. It's kind of like a double-edged sword. The myopathy and wheelchair have been the worst side effect. Steroids are definitely nothing to play around with. I would talk to your docs about your concerns as soon as possible. Good luck!