Looking for some more advice please. OH is reducing his steroids since RTX X 2 and starting Mmf after a relapse of his GPA. He is now on 7.5mgs which he to stay on for 2 weeks and then reduce to 5 mgs until he sees his consultant at the end of the month.
He seems to be doing well at the moment so my question is are steroids reduced slowly to reduce side effects or to keep any possible inflammation away or is it a combination of careful monitoring. I note from previous people’s posts that it can take some people months/ years to reduce and often an increase is needed at certain stages.
Thank you.
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Main1234
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When it is used to manage a flare while waiting for another medication to take effect the use is relatively short term, rarely more than a few months, and then it is a question of balancing the dose and symptoms. The side effects of pred are greater at higher doses and longer use. Once you are down to about 8mg, the speed of reduction is almost always slowed to be sure the adrenal glands have time to wake up again and produce cortisol, the body's natural corticosteroid which is essential to life. At higher doses of pred the production is suppressed as the pred replaces the cortisol and more corticosteroid isn't required. But after only a few months of pred the return of adrenal function usually happens relatively easily.
I have been on pred for years, it is the only effective management of the autoimmune disorder I have. Most people are able to reduce the dose to low levels and many get to zero eventually and the early stages are looking for the lowest effective dose but as time goes on we are waiting for adrenal function to return - but because we have been on pred for years it may take much longer or not happen at all. That is part of the reason you see patients who take a long time to get off pred. Increases in dose for us are when we have a flare - either because we reduced too enthusiastically or the disease activity increases for some reason.
Thank you as usual that makes perfect sense. He was ok last time he reduced and came off steroids completely without any adrenal problems so fingers crossed this time. Hopefully the Mmf and RTX will do their stuff.
Having just read through all of this, I am relieved to hear that he didn't suffer any problems after coming off steroids. I was on preds for several years before being weaned off a 10mg dose, 1mg per day per 4 weeks last year. I became ill during the last 3 months of this, suffering from nausea, vomiting (just water), light headedness and lack of appetite. My kidney flow rate plummeted, and I ended up in hospital with my creatinine almost 400, and eGFR at 9. Reason was my body wasn't making natural corticosteroid, so I was put back on preds. Now on 5mg per day for foreseeable future, and everything jogging along nicely in that respect.
I just thought I'd mention this so that anyone else who suffers these symptoms during weaning will seek help quickly.
I’ve been on steroids for about 10 years at varying doses depending on my symptoms. When tapering I’ve always had to taper once I get to 7.5mg at a far slower rate than Ive been advised, with any thing below that level I taper at either 1mg or 0.5mg at a time, it’s the only way I don’t get either side effects or my symptoms returning and sometimes it’s difficult to know which of the 2 it is.
I would suggest going from 7.5mg to 5mg is a big drop, it that’s what the medical advice is I wouldn’t want to disagree but know from personal experience that’s too much of a drop for me.
I do hope your OH continues to feel good though and all goes well .
Hi Main1234. I also have GPA and my ANCA Levels are rising as Azathioprine is not working for me, I am hoping to have my first session of Rituximab on Friday but am unsure because hospitals have started cancelling appointments. I was down to 5mg of pred and although not technically a relapse they have upped it to 20mg, they have told me it’s a “dampener” stop things getting worse but of course we are all different and some Doctors have More faith than others in Steroids. In my case they were tapered by monitoring because they are not good for you but only if your other drugs are effective. Stay safe.
My OH consultant decided to start RTX rather than change immune suppressants and increase steroids again as he thought Covid was due to make winter difficult with he was proved right. We were pleased with his decision and all seems ok at the moment.
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