PMR

[Summerrental]

I was diagnosed with PMR in July, 2016. The 20 mg or Prednisone that I was prescribed worked wonders, but when I got down to 10 mg. the pain came back & I had to go back up to 20 mg. Since then I have been up & down with the Prednisone. Do things ever get better?

[PMRpro Ambassador]

How are you reducing? How big steps, how often?

[Summerrental in reply to PMRpro]

I am reducing 2.5 mg. about every 3 weeks. It seems when I get stressed I have to up the dosage because the pain comes back.

[PMRpro Ambassador in reply to Summerrental]

No wonder you are having problems, No reduction should be more than 10% of the current dose to minimise problems - 2.5mg is well above that. By the time you get down to 12.5mg it is 20%. But the pred hasn't cured anything - it is a way to manage the symptoms by relieving the inflammation that causes them and allowing you a better quality of life until the underlying autoimmune disorder burns out and goes into remission. It does that on its own for 95% of patients in something between 2 years (very occasionally less) and something more than 6 years, there is no way to predict how long.

You are not reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. 2.5mg at a time to 15mg is probably OK but from there you need to slow it down, preferably not more than 1mg at a time. If you go 1mg at a time you may find you can get to 11mg - certainly somewhere below 12.5mg but not 10mg. Spending 4 weeks at each new dose also helps to be sure the new dose is still enough to manage the daily dose of inflammation which is created by the underlying autoimmune disorder.

You probably didn't need to go back to 20mg, adding 5mg and retrying the taper would possibly have been enough. So try again - more slowly! This isn't a race and we'll help explain how to go about it.

[DorsetLady PMRGCAuk volunteer in reply to Summerrental]

Have a read of this - might help you understand your illness and how to live with it a little better-

healthunlocked.com/pmrgcauk...

[daworm in reply to Summerrental]

That’s way to fast...I thought I could do that..no way...slow down!

[Summerrental in reply to daworm]

Thanks for your reply, I will slow it down.

[DorsetLady PMRGCAuk volunteer]

A bit more info on what you've done, or not done with doses might help us.

It does get better, but you need to do your bit as well as be on the correct dose of medication.

[navejasjoe]

Your situation parallels my wife's situation. She was diagnosed with PMR in May, 2016. She was started on 15mg prednisone. Because she quickly improved and felt great, her rheumy was intent to have her stop prednisone completely 7 months later. It was evident when she got to 7.5mg, she was quickly getting back to ground zero. He told her he was done treating her and washed his hands of her. She went back to her GP who placed her at 12mg, and a year later she was referred to a much better rheumy, who told her to taper at 0.5mg every two months, but when she got below 10mg, the aches and pains started again. So she is now at 11mg 4 days a week, and 10mg 3 days a week. She was able to function adequately at this level.

Joe

[Hidden in reply to navejasjoe]

Kind Regards to you & your Wife. Hope you are both doing Well? 💐

[navejasjoe in reply to Hidden]

Thank you MrsNails! We are both doing well. Hope the same for you. Take care of yourself.

Joe

[Thomas45 in reply to navejasjoe]

I wonder if any of these Rheumies have ever suffered with PMR.

[Summerrental in reply to Thomas45]

I don't think they have any idea, in fact I had to tell the Doc that I thought I had PMR. He had been treating me for Ostseoarthritis for a year & a half. I had been on 4 different drugs for OA, none of the drugs helped. Prednisone is the only drug that has helped me.

[navejasjoe in reply to Thomas45]

I sincerely doubt that my wife's first rheumy has any idea what it feels like personally. One thing for sure. He has never had empathy. My wife's second rheumy is much, much more emphathetic, almost as if she has had this dreadful ailment.

Joe

[Hidden in reply to navejasjoe]

Perhaps a relative did? I know it must be hard to dig into your stores of compassion and empathy, but even if the first and last bits of the interaction are positive it makes so much difference.

[Summerrental in reply to navejasjoe]

Thank you for your reply, this site helps one to feel that we are not alone with this painful disease.

[navejasjoe in reply to Summerrental]

It certainly does. We know that people on this forum speak from having experienced PMR - and so many of those have taken the time to garner so much knowledge about it that they are able to be so credible.

Joe

[Amstel]

I was also diagnosed in July 2016 and was started on 15mg prednisolone. It immediately worked wonders, well, within 7 hours anyway. It's taken me this long to reduce to 7.5mg but I've never had to increase at any time. I've followed the very valuable advice and reduced gradually by 0.5 mg each time below 10mg. During all this I have been able to continue my part time career as a rock drummer and have travelled extensively on holiday this year to Singapore, Australia, New Zealand and USA. On that trip I was still on 8mg but reduced gradually on my return. It was painful for a while but I persivered and will try the next reduction soon. In my experience things do get better but it takes TIME.......😀😀😀

[Summerrental in reply to Amstel]

Thank you for your reply. So glad things are improving for you, I am going to slow down the reduction time. My Rheumy says the side effects of Prednisone are so bad that he tries to speed up the reduction time, but at the expense of the return of pain to my body.

[Hidden in reply to Summerrental]

I think they all say that but sometimes they need to explain those effects. Once you are on pred and know the benefit it gives one should have a choice. Let's face it, reducing pred too quickly seems to cause most of the physical and mental anguish forum members discuss.

[daworm in reply to Amstel]

Exactly..and also when I was in the first year I would get very angry and feel sorry for myself on a bad day, now the same bad day is like, “ I feel like crap, but I know it will probably only be a day or two, and I will do what I have planned” PMR is now like my old buddy that’s wearing out his welcome...and pred? Meh...I’ve met so many people that have been on it for years I feel like a crybaby when I whine about it..BUT I DO WANT THIS TO COME TO AN END SOMEDAY,🤪

[Hidden in reply to daworm]

Sounds like a sensible attitude. Its when ALL the focus is always on getting life back , that you are not living today. Whether it's a good or bad day there's always something to enjoy, even if it's I will feel better in a couple of days. I don't look to some magical day when I will be "better". I used to struggle with that but now accept each day as it comes.

[Summerrental in reply to Hidden]

Thanks, accepting one day at a time sounds like good advice, I'll try that.

[Summerrental]

Thank you for your reply, I am going to try to reduce more slowly.

[PMRCanada]

My taper went as follows with about a month at each dose:

20mg 2 weeks

15mg

10mg (flare)

15mg for 6 weeks

13.75mg

12.5mg

11.25mg

10mg

9.5mg

9mg

8.5mg

As you can see I flared at10mg from following rheumy’s textbook taper which was too big of a drop. So I cut 5mg tablets in 4 until I was finally given 1mg tablets from my GP. As others have suggested a slower taper with smaller dose reductions. 1mg drops are also an options. Good luck.