reduction steriods feel ill

Hi,

Thank you for your speedy reply.

Dr said I could only go back to 15 for one week, then I must start reducing to 12.5mg, and can't go back up again.

Easy for him to say.

Then you need someone who is a) realistic and b) helpful. At least he said "start reducing" which is a start!

Hi,

Thank you for you're reply.

The plan according to my rheumy (can't spell today either) was 15, 12.5 for two weeks, then 10 for six weeks, and reduce by 1 mg every six weeks.

Seems a very long road at the moment.

Tomorrow has got to better, these non- days I call them when I achieve nothing at all, are physically debilitating and mentally devastating, as I am sure we all feel at sometime.

Hope are well

Julia

That is a VERY optimisitic schedule!

You are resting appropriately aren't you?  The pred only manages the inflammation which is what causes the pain and stiffness. It doesn't touch the underlying autoimmune disorder, the fatigue and the intolerance to acute exercise is due to that. There you have to learn to pace yourself

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

and that will help you NOT to overdo it to the stage you feel ill and take days to recover. Overdoing it is even enough to trigger a flare in some people. It's a common complaint with all autoimmune disorders - ask anyone with rheumaoid arthritis! By overdoing it I probably mean the things you have done happily for years - like travelling, baby sitting, rushing to everyone's aid when they have a crisis. You now have a "new normal" and it will pay you to work out what it is and stick to it - because when you abuse PMR it bites back.

Julia, I am sorry,but that isn't a long road, it's too fast!  I've replied to you on another thread where you posted, but I want to reassure you about something.  I used to be on the go all day, but now I am happy to achieve one significant thing, plus manage all the exercise and rest I need to keep healthy.  Last year if anyone had told me how much my life would change I'd have thrown them out of my house.  Now I am beginning to accept that I've been given a gift, this enforced slowdown. 

Hi,

Thank you for reassuring words.

Enforced slow down is something I have never considered, a little naive, thought I would work past 65, not 62 and feel un- employable and totally useless.

I know you are right, this condition does seem to be life changing, not dealing with it very well, this feeble woman I am today is so not me.

Hi,

It's this new normal can't seem to cope with, must sound like a real negative person.

So positive normally, adjusting to any condition is one thing, the slow road to recovery is something I am struggling with.

It isn't surprising - it's a whole new language that you have to learn and it doesn't come easy. Particularly so because most people who develop PMR and find the forums are the go-getters. Someone on another forum said a day or two ago - why isn't it the lazy slobs who get it, they'd enjoy it far more than we do! 

They probably do - and sit back and enjoy having an excuse not to do things!!! Mind you - I have no shame about not doing housework, I never did enjoy it!

Oh I so can relate to what you are saying and what you must be feeling.  I worked past 67; mind you, part time in a children's library, so it wasn't arduous, I didn't think so, although looking back I can see that we were always moving books, et.  And there was the time we packed the entire collection so room could be recarpeted.  Right after I'd returned to work after recovering from a broken leg.  I insisted on participating fully, although my supervisor tried to discourage me.  Is it any wonder that it was around that time I started to feel the beginnings of PMR?  Which remained undiagnosed for over a year.  I retired, but kept on pushing myself, thinking, oh if I only learn how to do this new exercise, if I only do that, etc., I'll get better.  Eventually a meltdown in a doctor's clinic got me to a new physician and a diagnosis.  After starting on pred I was doing everything, mowing the lawn (not a power mower) hand sanding a hardwood floor, trying to downsize and sort through and sell or give away about half or more of my books....  I did'nt know I wasn't cured.  And if anything my muscles are weaker now than they were at the beginning, although I think that I've regained some strength since getting down to lower dose.  And hand sanding the last of the bedroom floors?   Hmmm.  Maybe next year.....

I hear you!

Bless you,

You're words and support are of great comfort to me.

I hate house work too.

Takecare

Bless you,

You sound like me, the week of steroids I decorated the kitchen, and sorted things out.

Dug out boarders three weeks ago and that was it, have become a " blob" since then who does black ink colouring books.

So need to be better and soon.

Takecare

"So need to be better and soon."

No - that isn't the attitude you need to cultivate. To be honest - what you did "on steroids" is probably what has caused half the trouble (at least, probably most of it). We warn everyone who arrives here before pred - DON'T dive in and do everything you haven't been able to do for weeks because it will bite back. And it has hasn't it?

One lady on another forum decided at one point - after fighting hard to do everything she wanted - she was going to be a "Precious Princess" - and the difference to her quality of life was astounding. She got off pred - for several months before it came back. This time round she has a totally different attitude, takes the dose of pred that keeps her able to do things and avoids the things she knows will cause trouble.

It's about acceptance - that isn't "giving in", it is being realistic and graceful about it all. And once you get there you will be much happier.

I know you are right,

Graceful, Hmn will try harder tomorrow.

Just want me back, I guess it will be a more paced, sedate me, don't like it.

But I may become happier in the long run.

Thanks again.

Haha.  I took up Zentangle, a close cousin of adult colouring (more like structured doodling, which I've done since I could hold a pencil anyway).

I think it was you, Anhaga, who told me about Zentangle. It's very relaxing and so enjoyable. Thank you.

One rather sad thing which has happened to me over the past year is a slight loss of fine motor control.  One of the things I like about using a black artists' pen for Zentangle is it's very forgiving.  The results always seem to look great, even if none of the marks are actually where I intended them to be.🎨

I am sorry to hear that. That must be difficult especially when trying to do more delicate or intricate work. I use a pencil though mean to try colour. I may try a black artists'pen if as you say it is very forgiving. I thought it would be less so. It is good to find new interests and whilst having PMR can be challenging it is also a time for new pursuits. I intended retirement to be a time for following new hobbies and have not allowed PMR to get in the way. I hadn't planned to do marathons so it hasn't been a disappointment. It has been another way of looking at life.

 

Yes, I seem to have developed a very slight tremor, so I don't suppose that will ever go away.  But it's not bad and I don't think noticeable except when I'm trying to do something very precise. I've always loved pen and ink.  Still have from schooldays the penholder, and used it a few years ago to learn calligraphy, you can buy many different kinds of nibs for it, but have to dip it into the ink.  But now I just buy what is really a very high class fine tipped marker, especially designed for artwork, much less messy!