Hi so I had CT and broncoscopy and went to see the consultant this week, he confirmed the sarcoid ( even though my GP had diagnosed it months ago ) he asked me if I wanted to take steriods I said I was out of breath when walking, tierd and discomfort in chest but feel the side effects of the steriods are so bad that I should wait and see ( in some people it goes after 6 - 12 months on its own ) ive had this flare up since July but he said my lungs could start to scar and that would be worse than side effects ! Im so confused what if it does just go ?? How will I know if it starts to scar ?? And when should I take the steriods ?? If at all ?my doctor is leaving it to me and I dont know !! Can anyone help Claire
Steroids will give you a lot of relief from your symptoms. The side-effects aren't pleasant, but at least they are temporary. Scarring is permanent and will restrict your breathing. (I have lost 45% of my lung capacity). How about trying the drugs and seeing how they affect you? You can always stop them if you can't tolerate the side-effects.
I would like to know this aswell i see a specialist on the 1st to find out what they suggest does anyone know if there is alternative to steroids???
Yes,but most consultants try sterouis first. Then there are some anti-cancer drugs which work well for some people. They also have side-effects, of course.
Hi Claire,
I've been taking Prednisone for about 3 months now. For me, i barely have any side effects. I changed my diet and started exercising more regularly to avoid gaining weight and i actually have lost about 8lbs since! The only thing I've noticed is that it effects my sleep a bit.
I didn't have too many symptoms from the sarcoidosis but my joint pain is gone now that I'm taking the steroids and i feel much better in general. I get another CT scan in November to see if there is any improvement.
I would suggest just trying the steroids because like the others have said, it's better than risking the scarring and you don't have to take them forever.
i refuse to take steroids, but the doctors haven't tried to push the issue since they are contraindicated due to my history of depression. no one, however, ever mentioned scarring. now i am starting to worry... i am very aware of things going on in my body and i wouldn't say my symptoms are any worse now than when i was originally diagnosed back in 2010
Hi well my doctor is going to ring me next week about taking the steriods, but I am still confused about the steriods and the scaring and if this even will happen but if you have been well for years and not taking the steriods then maybe I will be too , so I think I will stay off them a little longer.