Prednisolone weaning

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Hi everyone,

I wonder if anyone has struggled to come off prednisolone as I have done. I was first prescribed it when I was still on treatment (pembrolizumab) and I was suffering side effects of colitis and joint pains. When I took it it was like a miracle drug - my bowels returned to normal and I was pain free. I was started on 20 mg weaning down to about 5 mg, but I was on and off it as my oncologist didn't want me taking it regularly, as it was she felt interfering with the efficacy of the treatment. Recently as I was no longer on treatment she was reasonably happy with me taking it longer term on 5mg, and I could cope well and live a pretty normal life, but then I was referred to rheumatology so they could look further at my pains. As soon as I tried to come off it completely the pains returned, I was like an old woman trying to get in and out of the car. I'm not due to see either specialist for another month, and I don't get support from the CNS, so I feel like going back on the drug even though I know they don't want me to, as my quality of life is so much better with it. Also at a low dose I don't know if it is particularly immunosuppressant. I'd really appreciate hearing from others in the group who have been through this struggle.

latchbrook over 1 year ago

Hi Sylvana

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet.

I've done a search in the group looking for any previous posts which mention the word 'prednisolone' and found these for you to have a look through. If any of them are relevant to your situation you could reply to the poster.

My husband has been on a 5mg maintenance dose of prednisolone for polymyalgia rheumatica and will shortly be coming off this. However, he was told told that he'll gradually be weaned off it and, therefore, hopefully won't struggle with the recurrence of joint pain that you have when just stopping immediately. Could your dose gradually be reduced?

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Bissell over 1 year ago

Hi there. My husband has been on 4 courses of steroids, starting off with IV 70mg and then declining down to zero. As you say, they work like a miracle drug, but when you stop you go back to all the side effects, fatigue, lethargy, lack of appetite etc. So, he's been given the all clear after his 3 sessions of immunotherapy for melanoma, which is fantastic, as he had to stop due 5o side effects. Even longer ramble cut short (!) He's now been seen by Endocrinology as his pituitary is buggered (technical term) after immuno. He's now on hydrocortisone, day 3. It knocks him for 6 initially, but improves during the day. I guess if he's been without various hormones for a while, it might take some getting used to. So, my advice is to get your bloods hormones checked and get a referral to Endocrinology. Good luck!

Sylvana over 1 year ago in reply to Bissell

Hi Bissell

Thanks for your post and advice. So glad the immuno worked for your husband, it worked for me too but I still have some worrying lung nodules which seem to come and go - the oncologist is monitoring them but not as yet suggesting more treatment; in any case I've had my ration of pembro so I can't go back on that. I will certainly ask about the hormone levels, my thyroid was the one that was chiefly affected (thus on thyroxine for the duration). but I will look into the Endocrinology issue as well. All the best to you both.

Alottment lover over 1 year ago in reply to Bissell

Excellent info Bissell, just what I was going to suggest too x

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Prednisolone weaning