steroid inhalers
Posted , 3 users are following.
Hi members, I was diagnosed with stage 1 lung sarcoidosis in July following ct scan and chest lymph node biopsy. Was prescribed Clenil 100 inhaler 1 puff twice daily for persistent cough which was my problem. My cough seems to have disappeared and I am wondering should I continue taking inhaler. My consultant said it would not help the condition but would help the cough. Is there side effects from long term use of inhaler and in your opinion is it helping my lungs. Don't see my consultant for another 4 months. I also was diagnosed with spondylolisthesis one year ago after having low back pain and tingling in feet and lower legs. Still get tingling but back pain has settled down. Would appreciate your views. Thanks
0 likes, 2 replies
gina1970 Flo1949
Posted
Hello Flo1949
?I just read your story and I also did some research on the inhaler you are currently on. It states that you not to stop taking it unless your doctor tells you to. But I would ask this one question which I even myself didn't ask. The usage if steroids and the medicine they have you on helps with Asthma Do you have asthma . See this is where I went wrong I was so believable in what the doctors where telling me and I didn't bother asking questions and now I am a stage 4 and they can only give me quality of life or what's left of it. I was on so many trials it was insane I found out about my sarcoidosis when I was only 17 years old. And now I will be 47 this year. At times I wonder if I am planning a birthday party or my funeral. If they put you on Prednisone just make sure you know the risks , I am currently on Methotrexate injection ( I do my own injections) Once a week (Mondays) then on Tuesdays I take a calcium pill. There is also a Pet scan which is costly but it will show you all the areas you have sarcoidosis. I've got it throughout my body only thing left is the brain stem I still run that ..lol I do wish you the best and hope that they caught it and can treat it and keep it under control . Sorry if I talked your ear off.
Gina
Flo1949 gina1970
Posted
Hi Gina, so sad to hear how your sarc has progressed over the years. I can't start to imagine what you are going through. I feel very lucky that mine seems fairly mild incomparison. I don't have breathing problems so I don't think I have asthma. My cough has really settled down since using inhaler. I sometimes wonder if I may have nerve involvement as I get tingling in lower legs and feet and my right lower leg swells at the same time. It was diagnosed as spondylolisthesis last year after MRI scan of lower back which was causing me a lot of pain. I hope you are having a pain free period and wish you well for the future. I am 68 years of age so I consider myself fortunate to have escaped the condition this long.
Kind regards
Florence.