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Hello everybody , after blood tests and x ray , i have been diagnosed with chronic sarcoidosis. I am on steroids now for 1 month and i am getting very better as it was very severe before. My doctor said that i will have steroids for 6 months to a year and i am really worried about my bones and weight. He said it is going to be decreased every month and after 3 months , i will go for chest C.T with contrast again then he will decide how much the decrease will be . I am so worried to be honest, is there is anyone here is experiencing any side effects after taking steroids for a long time. I just have to say that i was really suffering days and nights , i never had proper sleep or life .always tired , persistent coughing , shortness of breathing and the inhalers never helped, foggy mind ,stuffy nose and continues skin rash specially my legs and ankles.waiting for your share .

4 Replies

Hi nonnita,

I have been diagnosed for 3 years. I take my steroids every time I get to the point where I can’t cope with just painkillers anymore, just to give myself a break.

I have gained weight but to be fair it’s worth it just to feel half decent again. I hope you find this helpful and I hope you feel better real soon .... kind regards Annie


I am so sorry you have to take steroids for your pain. I hope you get feeling better soon. It's hard to deal with when your mind wants to do so many things and your body hurts to bad to move.


Oh yes your symptoms are normal for Sarcoid. I've been tired on and off for years. Steroids have left my arms bruised and dark from thin skin from years of steroids. I have a collapsed trakia which is 21 layers of cartilage in my throat. I used to sing but now I can't hit the notes. You just have to keep getting up and do your best at living. Don't let it win.

The one thing I did for my health is move from a high elevation to a lower. I use oxegyn when I'm tired. For every 1000 ft you drop in elevation you gain 3% more oxygen. I gained 10% more by moving. It was hard to leave my friends and family but it's just a new adventure.

Keep your chin up and get use to people forgetting your sick. You will hear for years how good you look. Must not be sick any more.

Take care of your self first over anything else.



Hi Nonnita. Sorry to hear of your struggles with sarcoidosis. SarcoidosisUK are here to support you in whatever ways we can. For instance we run support group, have a Nurse Helpline and information leaflets. Please find more information on these services and more on our website here: sarcoidosisuk.org and get in touch. Best wishes, Jack, SarcoidosisUK


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