Prednisolone reducing and Adrenal insufficiency

[HappyLung]

Finished the last of the Cyclophosphamide infusions 2 weeks ago and had already started reducing the Pred a little while ago from 10mg by 1mg monthly. Half way through 7mg started developing a pain under left ribs at the back, now worse that I have gone to 6mg. It dawned on me this morning that it might be Adrenal insufficiency. I am considering taking 10mg for the next 2 days then returning to 8mg, then 6mg over 4 days. Your thoughts would be greatly appreciated.

[Diamister]

sorry to hear you’re struggling with this. My own experience with coming off prednisilone is that the slower I go, the better. If I start to get issues I go backup a level, take another week perhaps, then reduce again. All in conjunction with my doctor of course. Coming off pred is unpredictable but should, in my own experience, never be rushed. Good luck, hope you find the right approach for you.

[HappyLung in reply to Diamister]

Thank you. Decided yo go ahead with the 10mg. See how it goes.

I've been reading through other posts, mention is made of weaked muscles through taking Prednisolone, can be easily sprained and painful, I've been coughing a lot lately which could have put a strain on my back. So none of it very straightforward. I'll keep the increased Pred for a couple of days, rest and see if that helps.

If no results I'll consult the GP.

[Diamister in reply to HappyLung]

got to watch those bones as well with long term pred use! Plenty of calcium! Good luck, and get that cough sorted out too!

[HappyLung in reply to Diamister]

thank you, I do take calcium D3 twice daily. My back pain was getting worse this afternoon, so called in to Abingdon small injuries Hospital for help. It was suggested a muscle sprain and to treat with Voltarol, which I’ve done, now feeling much better.

[Diamister]

that’s reassuring, you do get twitchy about everything don’t you. At least my wife does, every cough and deep breath is viewed with great suspicion and concern!

[Investigator1]

Hi HappyLung, really sorry to hear about your trouble, I have struggled a little coming of Pred, It’s been 18 months now and I get bouts of aches and pains on my right side but in the same area. I used to think it was my liver but tests and scans have proved that to be fine. I sometimes feel lethargic, get stressed easily and still have a few mild mood swings, unfortunately all down to an adrenal gland not performing as it should. That’s the bad news, the good news is your body will more than likely adapt, you will find that all the trials and tribulations are part of a journey that will become acceptable as time goes by. Things will improve.

[Chaletlad]

My own experience is I can’t get off prednisilone now on 3mg 4mg on alternate days, still on immune suppressants. Diagnosed in 2019 with MPA

The fatigue is the biggest problem at the moment but good days bad days good luck.

[HappyLung in reply to Chaletlad]

So, are you on infusions? What medication are you on? How long for? Are you In the UK? How are you coping with any symptoms? I am quite debilitated, generally tired, can’t walk far, seem to be suffering with anxiety. As the infusions have come to an end, I am hoping with rest I will return to normal, although I expect it will take awhile. Best wishes on your recovery.

[Chaletlad]

I had 6 cyclophosphamide infusions over a six month period after eight days in hospital after being diagnosed, on a very high dose of prednisolone that has been gradually reduced, when I get down to 3 mg I go downhill. Hospital was April 2019. Still see the consultants or a chat on the phone every three months, that’s after the blood tests prior to every visit. I’m on prednisolone, azathioprine, calcium tablets, plus others not related to Vasculitis. Consultant is happy with where I am bloods are holding steady and kidneys performance has raised but will never get any better due to damage caused. Lungs also damaged can’t do anywhere near what I could prior to Vasculitis. Try to pace myself to do some smaller jobs like mowing the lawn, washing the car and suchlike but always has to be in the morning nearly always worn out by the afternoon.

I’m in Leicestershire UK

Take care.

[worried_about_me_mum in reply to Chaletlad]

Sorry to hear about the lung damage, just wondering if you were diagnosed with pulmonary vasculitis specifically? Your situation sounds exactly like my Mother's, everything is such an effort for her now. May I ask what age group you are in?