Weaning off prednisolne

[cazza34]

im on Mycophenolate mofetil, nintedanib and prednisolone also oxygen 24/7...phew! Hospital are trying to wean me off prednisolone and i was doing ok got down to 7.5mg daily, then this terrible cough and breathlessness kicked in, now i cough and am breathless anyway but it was much worse. So suspecting i had a chest infection took my emergency pack of antibiotics and steriods ,( prednisolone) and 1 day later feel like a new woman. I was on 15mg daily and that was ok. The consultant tells me the mycophenolate and prednisolone do the same job, but i think if anything tge Mycophenolate dosent work. Ive been on it 4 years and its not allievated my coughing or breathlessness...anyone else out there going through similar? I feel i want to contact hospital and come of the Mycophenolate and increase the prednisolone back to 15mg.

[madonbrew]

Hi Cazza,

I’m sorry you’re struggling so much. I don’t know about any of your meds other than pred. It might well be worth talking to your consultant and seeing if you can give that a go. Even a trial period. Pred long term isn’t great….which is why I’m guessing they’re trying to wean you off that. But I don’t know the long term side effects of your other meds, and also if you feel that it’s not really doing anything anyway it’s definitely worth talking to your consultant about.

Dee

[tbeth]

Good idea to wean off of prednisolone if you can. It can do terrible damage to your bones. I know from experience. Good luck. I hope things work our for you.

[AngieB72]

I was tried on mycrophenalate but only lasted a few months as I couldn’t tolerate it and it actually made my breathlessness much worse. Talk to your consultants as their may be alternative medication you can have.

[Millyboo710]

I’m on mycophenalate and prednisone (plus 9 other drugs!) and am still breathless but nowhere near as bad as I was before diagnosis. I’m on 7.5 mg of prednisone and 1000 mg of mycophenalate. Good idea to chat with your consultant. Good luck!

[watergazer]

sorry you’re struggling. I only know about prednisolone and I try not take them now because of the long term effects so only have them if it’s the last straw x

[sassy59]

All I know is that Pete’s lung doctor tried to wean him off pred completely but Pete just couldn’t cope. He takes 10mg daily and is still breathless. Chat to your consultant if possible. Xxx

[Wavecrest]

I am on same meds 20mg prednisolone daily, 250mg mycophenolate twice a day & Nintedanib twice a day plus O2 concentrator between 2&4 x24 hrs per day.Had reduced to 15mg prednisolone for 2 weeks.Following hospitalisation for chest infection prednisolone back to 20mg per day & others as before. Asked Consultant to reduce pred but wants to keep me on 20mg. Like you I feel more breathless & feel that O2 may need reassessment. Pharmacy phone review next week so fingers crossed some fresh action on the cards.

[Burghy]

When I try to get off of prediselone the pain in my muscles and joint pain is excruciating and I can’t walk so back on them I go

[Georgiab123 in reply to Burghy]

iv just come off preselodone and my joints n muscles are jiving me tremendous pain but I wasn’t told that

[Lol1944]

my experience of reducing after a chest infection is sooooo sooooo slowly

[Bdmwazuk]

l have managed to wean myself down to 2mg prednisolone but have now started with a cough again and also diagnosed with heart failure, my doctor wants me to take mycopholate but I’m reluctant due to side effects.

[direstraits1]

I take prednisolone and antibiotics when I feel a flare up coming and stop taking them as soon as the course has finished or when told, not taken mycopholate yet but hope you get sorted

[breathless11]

Hi Cazza, I hope you get sorted soon, from my experience (maybe I'm a wimp) I find it very scary when I'm out of breath. I believe the reason they don't like us on pred long term is the side affects, weakening of bones etc. Having said that personally I would take that risk rather than being short of breath. Take care

Andy