Possible reduction after next blood test 2 weeks time.

[cycli]

Today is the first day since diagnosis in June that I awoke and didn't think about state of muscle/body. Didn't think about going up or down stairs so wasn't conscious of muscle reaction. Relates to the great reduction in inflammation figures on blood as last 3 days has been a definite improvement from 71 to 30 in 2 wks. Hoping this leads to complete suppression of inflammation and therefore planned reduction of pred from 40mg. Don't worry, I'm not suddenly going to increase my exercise and work because I suddenly feel ok for once. There's still a way to go and I haven't started reduction. What's the realistic picture from here and what should I expect to feel?

Okay so a month on and I have now reduced from 40mg to 30 mg just yesterday. Everything seems fine so far and i am strangely feeling more alert. The inflammation has flatlined so I am able now to determine how I feel rather than guess at it. Mind you, determining the cause of twinges, stiffness and pain still has me guessing somewhat. Just thought an update was due. I'm sticking here for a week or so as I've been warned not to get too cocky by a certain person...you can probably guess who good to know people care enough to worry. Thanks.

[DorsetLady PMRGCAuk volunteer]

Early days (long before Covid and subsequent issues with getting tests and seeing GPs), I had monthly appointment with GP, bloods done on a Monday, appointment on a Thursday.. provided I felt okay, and blood corroborated - I started new taper on Friday.

You cannot say that inflammation will be supressed completely, but the steroid should keep it "under control".

However, as has been explained many times, Pred does nothing for the underlying illness, so you still have to aware it is there...and do what you can, but not overreach yourself.

How will you feel?.... that has as many answers as there are members on this forum...personally, apart from the initial side effects, I felt good most of the time, until very low doses and adrenals struggled, but many don't.

[cycli in reply to DorsetLady]

thank you. Salutary but helpful.

[PMRpro Ambassador]

The next, possibly somewhat longwinded, step is to reduce the pred dose SLOWLY to find the lowest dose that gives the same result as you have got now. That is because the disease is still active - and you need to be able to control it with as little pred as possible. But you are feeling around in the dark and a slow taper with small steps is required.

[cycli in reply to PMRpro]

thank you. Today the legs sustained standing and gentle working all day without feeling lactic or tired. It feels good to have that feeling back. Not going to push my luck though. Enough now. On full dose for 2 weeks still and then will hope to taper. Think the Dr. wants to go from 40 to 35 first step.

[PMRpro Ambassador in reply to cycli]

Tomorrow is when the test comes!!!

[cycli in reply to PMRpro]

haha...I know. Fingers crossed. Still worth it, for now.