Hi all,
I am still very new to pmr, and could do with some advise.
This week is my second attempt to reduce steroids from 15mg to 12.5, four days I , I feel like I have been hit by a truck, tearful and shaking.
Will this pass? and will it take long.
Still in denial, so hate this.
Would appreciate any thoughts.
Julia
I think your body is telling you it's not ready to reduce. Go back to 15 for a few weeks and then try again in smaller increments.
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.
Are you trying to go from every day old dose to every day new dose straight away? If so, some people are very sensitive to changes in dose and a slower approach is far easier to cope with.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you follow this link you will find a thread with a load of links in the first post - all reliable information and contacts - and in the replies part you will find a slow reduction plan together with an explanation of the whys and wherefores. It has been used successfully by many people on the 3 forums in the UK (who live all over the world) and has been seen and approved by various rheumies - and is currently in use in a clinical study in the north of England. It may appear slow - it isn't slow if it works!
You haven't told us how long it is since you were put on pred that I can see (I haven't time to read the entire 70+ replies in your thread just now, I have read them as they were posted), just that it is after 18 months of symptoms. However, the impression I get is that it isn't long - and you are already failing with a second attempt to reduce from 15mg to 12.5mg. You MUST be patient - yes, I know you hate the whole set-up, PMR is bad, pred is worse to most people, but you have a very basic choice: take pred, learn to accept it and work with it to get the best out of it, or go back to the pain and disability I'm sure you had for the last 18 months.
Top experts (in the "Bristol paper" in that link I gave you) keep their new PMR patients on 15mg for at least 6 weeks. Only then do they start to reduce. Yes, they say straight to 12.5mg, and it works fine for some people. However, other top experts have recommended in the past that in PMR no reduction should be more than 10% of the current dose - here, that would be not more than 1.5mg for this first time. By 10mg/day you are down to 1mg - so why not start with 1mg steps? If you feel you MUST do the 2.5mg, then use the dead slow and stop approach - it does work doing that for some people.
A lot depends on how active the underlying autoimmune disorder that causes the symptoms we call PMR is - if it is active you will find it more difficult to reduce far to start with. You have had this for a long time - there is probably a lot of stored up inflammation to clear out. Have you had your ESR (sed rate) and CRP (C-reactive protein) levels checked? Were they high to start with? If so, have they been checked now before this attempt to reduce? Were they already pretty much as low as they are likely to go? If they weren't low then you are setting yourself up for a fall at the first hurdle.
Almost everyone I know hates pred - I don't, it has given me my life back and I've been taking for 7 years - but most people come to an agreement with using it: it works to give a reasonable quality of life until the cause of the PMR burns out/goes into remission, whatever you want to call it. Which it does for the majority of people sooner or later, usually 2 to 6 years or so for 75% of patients. Then you will need no pred. Unless it returns - which it can. In the case of PMR there is no choice of medication, only pred reliably manages the symptoms. Some people find methotrexate helps to achieve a slightly lower dose - many don't - but it may be it isn't "just" PMR they have, late onset RA can appear identical but it usually responds to methotrexate.
The more you tell us, the more we can help with advice and suggestions - and there are plenty of people here who will offer their experiences in an attempt to help you.
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
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.
Thank you so much,
I was in such a hurry to reply I didn't read all the points you raised.
I have now.
I was diagnosed in May after 18 mths of severe pain and stiffness that caused my to leave a fulltime job.
My bloods have never been raised and I think that is what took the time to diagnose.
Started on 15 felt better than I had for months, apart from a headache, Dr increased dose to 30 and I felt dreadful.
Did two weeks on 15, reduced to 12.5 second week rang Dr and he increased it for one week only.
That was last week, started reduction Saturday and now feel like I am going mad.
Don't mean to sound dramatic, normally I can fix anything, Julia
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.
"normally I can fix anything"
That's what I've just explained - you now have a NEW normal. When you accept that you will have far more energy to devote to managing your illness. As Anhaga has said - she was much the same a year ago.
However - if you have no raised blood markers then you have to become far more sensitive to your own body - as I have. It took 5 years for a diagnosis - effectively made by me in the end! if you have been forced to give up your job - and I do realise that is a massive loss for anyone - then you can spend some time now on you. That will help a lot.
It will have been the headache that triggered the 30mg response - in case it was occult GCA, which can result in overnight loss of vision. It does suggest though that your body is very intolerant of dose changes - and the slow slow way should help that a lot if you can get the doctor onside enough to provide enough pred as it will take a bit more overall.
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
I had a similar reaction and my Dr advised going back and doing 1mg or even half at a time for 2 wks at a time or even a month. THis worked for me. I'm down to 8mg now and getting there albeit very slowly. Hope you'll soon be feeling better. Chin up. Feel for you X
"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.
Hello Julia, I dare say your words resonate with most of us who are on this forum. They certainly do with me. I was actually diagnosed in July of 2015 started on 15 mg of Prednisone which took away all my symptoms and gave me my life back. I had no idea at the time that a year later I would still be struggling with it😕 Only because of this forum do I now I know this could go on for years. My Dr had me reduce to 12.5 mg 3 times early on and each time the symptoms came back with a vengeance. Ultimately I ended up on 20 mg to get it under control again. I'm currently working at reducing my dosage using the slow method detailed on this forum. How's that going for me? I don't feel as well overall but it isn't debilitating so I am continuing on and will see what lies ahead. I hear and relate well to the frustration in your words. The people who write here on the forum helped me accept the fact that this isn't something that will go away soon and to stop fighting against having to take the Prednisone. I guess it's called "acceptance" of what is ! I have many of the side effects from it but I know I couldn't function at all without it. Hopefully you have a Dr that will work with you on your Prednisone reduction and not insist you do it their way. Keep reading and asking your questions here. It certainly helps being armed with information when you first start the PMR journey that you don't find elsewhere. Wishing you better days ahead.