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I have stage 4 lung cancer and was put on decadron when I started chemo approximately 11 months ago. It worked great in the beginning. Then the side effects started. I had many of the Cushings syndrome symptoms...moon face, 40 pound weight gain, buffalo hump, hair growth, swelling etc. The doctor began weening me off. It has been 6 weeks. I continue to have terrible muscle and joint pain, fatigue, trouble walking, trouble sleeping. It is horrible. I have done a lot of research about steroid withdrawal and these side effects are common. I heard withdrawal can take weeks to months. Many people have described their symptoms, but didn't mention how long it took to get back to 'normal'. PLEASE respond if you have gone through this and how long it took before you felt like "yourself" again. They say it is temporary, but I feel like I am losing hope!

Thanks!
Jen

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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.

Good luck,

Maribeth

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

I took the decadron for chemo the same way. However, I continued with a daily dose of 4 mg. I started noticing side effects that resembled Cushing's Syndrome and began weening off the decadron over a few months. I completely stopped taking them in the beginning of February. The withdrawal process has been horrible. Luckily, I've found MANY people who have gone through this terrible process. The symptoms are all the same. I feel better knowing that I am not alone and eventually this will go away.....it just takes a lot of time!

Hope you are feeling good!

Hi Jen,

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!

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