Hi hope everyone is keeping safe.
Looking for some advice (again) . OH had RTX 7 weeks ago and has been reducing his prednisone and increasing his MMF .
He had his flu vaccine on Thursday and reduced his steroids to 10 mgs and increase MMF to 4 a day all on the same day!!
Today he has had extreme fatigue hardly out of bed and reduced appetite . No other symptoms .
Is this “normal” he saw his consultant last week and all bloods ok .
Thank you
It may be that he doesn't absorb much of his oral pred dose and he is now into "return of adrenal function" territory and if it isn't starting to wake up he is likely to meet the "deathly fatigue" that can cause. How much does he reduce at a time and how long has he been on pred? But doing 3 things all on one day? Not a good idea ...
He has recently had a relapse so was initially on 40 mgs about 12 weeks ago. Had been ok until this drop to 10mgs from 15 mgs.
In retrospect not a good idea to do everything together.
While dropping that much at one go may work in short-term use of pred, it definitely doesn't after months of high doses. Don't care what any doctor thinks! When tapering the dose towards the end the recommendation is not more than 10% of the current dose. Most people would manage 15/12.5/10 at 2 week intervals but from 10mg it really needs to be 1mg at a time - and some don't cope too well even with that.
When you reduce pred in big steps it often causes steroid withdrawal effects - often very similar to the illness for which you are taking the pred so often the patient thinks it is a flare of the illness. They really can be quite hard on the body and it is worth taking a bit longer to allow for a bit of comfort. It should improve over the next week if it is that. Hope so
It sounds very much like the steroid dosage has been dropped too quickly. Some people are fine with a 10mg drop. Others need 1mg reduced daily... Get some 1mg pills and alternative the dose reduction or stagger down slowly. Don't forget 5 - 7.5mg daily when converted is your average natural dose. So in many respects while you are lowering the dose, this is the level the body starts to kick back in and fatigue can be a killer.
Mine was so bad i could barely get out of bed irrespective of sleep or rest. Try to kick start in the morning, not just from the steroids but caffeine or 2 apples. Multivitamin and light exercise
Thank you for your reply.. I think you are right but my OH tends to follow his consultant to the letter.
Today he is a bit brighter so will just keep on things. Last time it was the drop from 10mgs to 7.5 mgs
Hi. I have been in Hosp 3 times in last 18 month's. Also Asthma, Bronchiectasis, COPD, Anca Vasculitus, Blood Clots , Anaemia, Lymphedema, Etc-goes on and on.
I had 2nd Rutiximab over year ago. Was pretty bad. Also previously had 60 Mgs Pred .- reducing to 45mg after about 8 wks. Since then been reducing. had got down to 6 mg, but went in to Hosp last Christmas Eve ( Chest Inf) & was put back up to 10 mg. Since then I'm now down to 5..1/2 & 5mg alternate days. I have been reducing since that Hosp stay and now down from 10 to 5/1.2 & 5. It's taken 10 months! Only ever reduce by 1mg reductions! I had over 60 visits to Hospitals, Scans etc. They recently are checking for Kidney Cancer. I was put on Steroids when I was 13- over 60 years ago and was left on them for almost 30 years before they discovered they could be dangerous over long periods Usually Weeks - not years!
Following my stay in Hosp at Christmas I have had daily fatigue and have to have a sleep mid day every day. I try to resist but have to give in to it - no choice.
Well after all this you'd wonder how I'm still alive. I do everything I can to stay active. Few people understand how I can stick at this aspect but it's all about will power. Your brain is your most powerful weapon you have against illness. I eat healthily and I try to keep tabs on any info that might help me. And one other very important thing - I pray.
Best wishes and love to all those out there suffering with these horrible auto-immune diseases.
I don’t think doctors have ever personally experienced reducing pred! Personally at 15 mg I will only reduce at 1mg at a time. I’ve found when you are more experienced in this even the addenbrookes consultants accept that you do what feels right for you. I hope the above replies help your OH.
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