My problems started about eighteen months ago with a very bad cough and breathlessness that wouldn't go away. Antibiotics from the GP.made me very ill so he gave me a different sort that also made me ill and I lost nearly two stone in weight very quickly. Eventually I got an appointment with the chest consultant in hospital. After many tests and X.Rays including C.T.scans I had a lung biopsy. The diagnosis now is Sarcoidosis. I manage 'normal' life quite well but get very tired and breathless so try and pace myself. Saw my Consultant last week who wants me to try Steroids which I really don't want to do having heard about side effects. I never take medication having been fit up until now. Can Steroids be taken for a short while or are they long term? I was a very heavy smoker all my life (now in my mid fifties) until I packed up sixteen years ago but the Consultant does't think my smoking has anything to do with what I have now. Does any of this ring a bell with anyone?
My journey....My first ever blog. - Lung Conditions C...
My journey....My first ever blog.
Forgot to say I'm female - don't suppose it makes any difference though...
Hello dully, I don't think being female has anything to do with your condition!
Welcome to the site 
we are a friendly bunch & I,m sure you,ll soon be joining in with all the chat & advice & support that happens here.
I don't have the same condition as you but can relate to the breathlessness. I recommend taking the steriods as prescribed as the alternative is often being admitted to hospital & that is to be avoided as much as poss due to the infections you could pick up in there!!
I didn't want to take them when I was diagnosed, but I soon realised it was those or hospital!!!
Anyway I,m sure you,ll soon meet some one who can advise you better & there is always the helpline
Karenxx
Hi Dully as Sillywitch above, my own welcome of course and the number for the helpline is 03000 030 555.
Best of luck
Chris
Hi Dully
There are about 7 or 8 that come on here that have Sarcoidosis. I have only ever had steroids for a short term course i.e. 6 for 3 days, 5 for 3 days, 4 for 3 days etc. They are very good at coping with infections. I am male - and it does make a big difference. he he. Bob x
Thanks for your reply, do the steroids have any side effects with you? I was talking to someone yesterday with Lupus and she feels the Steroids help her without many side effects which is encouraging, as you say hospital isn't the most healthy place so good if you can keep away from it. Thanks again for your words
Jill
Jill
I don't know about Sillywitch but I have no side effects at all. Usual warnings about side effects in the packet but none applied to me. Bob
Hi Jill, I cry & get a bit grumpy, or as my granddaughter says have you got your shouty head on Nain It passes within a few days of stopping them & is small price to pay for being able to breathe (Specially as I,m not the one getting shouted at 
)
Take care
Karen xx
Hi Dully
Welcome, we have a an information leaflet on Sarcoidosis and the nurses on the helpline are lovely so please feel free to give us a call for further information - 03000 030 555.
I'm here for the emotional support side of things so if you're feeling a little lost, down or lonely then please give me a call for a chat. I can provide handouts on worry, anxiety, panic attacks, depression etc and I am happy to talk you through them or arrange for a call or series of sessions to support you. It really can help so please feel free to give me a call or email. The service is free and confidential and all by phone or email. (I'm a qualified Counsellor and Cognitive Behavioural Therapist) and I do understand and empathise and I do like to chat ... keeps me out of mischief!
Take care
Heych
HI Dully, i would not worry to much just now,,the steroids you get will be carefully controlled by the doc..Also the benifits outway most side effects,any concerns have a chat with your doc or give the helpline a tinkle...
Thank you all - I'm going to give steroids a go ( I can put up with being grumpy) it's the moon face that bothers me most I didn't realise there was such good support on this site so thanks again
Jill
Oh Jill, you sound just like me - the thought of a moon face made me realise just how vain I was. Mine emerged after around 4 months of taking the high dose. Once I got below 10mg it started to go down.
Marie x
I have been on courses of steroids various times, no moon face. I don't think that happens to everyone. The only side effect I have is they give me an appetite which I need anyway. Don't worry about taking them.
Welcome to the site dully.
Lib x
Hello and welcome Dully I do not have Sarcoidosis I have COPD and have taken steroids when inflammation in my lungs has improved after a short course of prednisolone (usually 30mg for 10 days max) there have not been any bad effects only good ones.
Thank you - that is all so positive it makes me feel much better. I have a lung function test tomorrow steroids for four weeks then another lung function test to see if there is an improvement. Will keep you up to date on how it's going.....
Jill
Hi Dully
I have bronchiectasis and asthma and have emergency packs of steroids and anti-biotics at home if an exacerbation kicks off. The main side effect I get from the steroids is feeling rather wired up and not sleeping very well but that is tolerable and better than prolonging the recovery time.
Good luck with your treatment. You will see that most of us manage to enjoy life while coping with dodgy lungs.
Lesley
Hi Dully, and welcome. I don't have sarcoidosis, I was diagnosed with Asthma 15 years ago, and have taken steroids at various times throughout that period, the tapering dose and the last lot 8 x 5 days. No shouting, no side effects except for a craving of red meat (something I don't usually eat), and the plus side is I'm breathing easier.
The doc. didn't tell me about the red meat - I've been vegetarian for 25yrs It would be lovely to breath easier and have more energy....
Hi Dully
I have sarcoidosis and was put on both steroids and immunosuppressants. I was on the steroids for 20 months (a high dose for the first year of 40mg a day). Yes they made me ravenous which let to me putting on a couple of stone, I got a moon face and my fat shifted all over the place, my skin turned to paper and i had yo take all sorts of meds to clmbat thr bone thinning etc but and it's a BIG BUT (like my own), they made a massive difference to my life and health. After 4 years of hell they gave me my life back. I had energy, was able to do more and generally felt better. After a year I started to taper down, once I got below 10mg my moon face started to disappear as did my appetite. I'm now off them completely (I am still on azathioprine). But I wouldn't hesitate to take them again should it flare up.
Yes there are awful side effects but you need to balance those risks against the good they can do. If you do get them take the early in the morning as they are less likely to interfere with your sleep.
We are of course all different and when it comes to tolerance to medication I think I'm one of the lucky ones. Good luck - happy to chat more if you need anything.
Marie x
Hi Marie,
I have now taken the steroids for one week and certainly feel better, not quite as breathless and definatly have more energy, don't think I look like a moon yet but clothes feel tight around my middle already. I'll put up with this just to feel a bit more normal! How long did you take steroids before you felt really well? I am taking 35mg a day and pills to stop a stomch ulcer, if I have to carry on the doc. said he'll give me pills for my bones.Thanks for telling me how it was for you it was a great help when I was quite confused.
Jill x
Hi Jill
I am so glad you are feeling better. I felt better than I did almost within a week or so and after about 3 months I really did feel better than I had done in years - that was when the moon face kicked in too. They still checked my ACE levels and they decided after about 10 months that the sarc seemed to have burned itself out. I feel as well now as I did 18 months ago. I will never feel completely better because its ruined my lungs but I feel great compared to how I felt pre-diagnosis. make sure you do yet your calcium pills if you are goign to be on them long term though as they can play havoc with your bones. I also got the stomach ulcer pill. As for your clothes feeling tight around the middle - well they do make you retain water whcih is probably what is happening at the moment being only a week in. Try and avoid salty foods as it just makes it worse. Keep an eye on your appetite - I went a bit mad. I hadn't eaten properly (no appetite for 2 years) and then suddenly all i coudl think about was casserole and mashed potato!!
Good luck
Mariexx
Welcome Dully.I try to give HealthUnlockders a daily dose of humour tocheer them up.
Read my blogs for your daily tonic
Richard
We all love a bt of humour :))
Hi Dully and welcome to the site. I don't know what sarcoidosis is. But it sounds like you need to take some steriods.
Bev x
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