PMR, Prednisone dose

if you really needed 60mg to get control of your symptoms then I would suggest it is possible you may not have PMR. PMR is characteristic in responding to moderate doses of pred, up to about 25mg. Giant cell arteritis may require more. But there are forms of inflammmatory arthritis that can present looking very like PMR but would not respond well to the lower doses. 

If you follow this link:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

you will find our "reading list" in the first post and the Dead Slow, Nearly Stop approach to reducing in the replies part, just scroll down to find it.

If it is actually GCA (giant cell arteritis) that you have then the initial reduction can be done in 5mg steps to get to a lower dose relatively quickly but as the dose reduces, the size of the reduction steps should also be smaller. A good guide is "not more than 10% of the current dose" but most people manage 5mg steps down to 30mg if they have no flares. Then the 10% guide is more important - 2.5mg at a time makes sense down to 20, or even 15mg.

I saw my new, predisone-friendly rheumi yesterday.He spent a whole hour with me, checking my past blood work and tests.He was appalled at the handling of my condition from the start and for having tapered when my markers have stayed high from the beginning.When I told him I had broken my pelvis and perhaps the old rheumi thought the high CRP and ESR were due to the fractures, he looked at the cat scan report and said he didn't agree.When I told him that the old rheumi told me to taper from 20 to 5mg in three weeks, he chuckled and shook his head- he said one can break a bone from a Vitamin D deficiency without having osteoporosis and that my fractures were only a month after starting the prednisone so they were not to blame.

He seemed in line with everything I've learned on here, told me not to be in a hurry to taper, to alternate the new dosis with the old, etc, but he says the symptoms I describe sound more like GCA than PMR but that due to the chaotic handling of my case, he is kind of confused and wants me to try Methotrexate.I really don't want to but as he seems genuinely interested in my case and very knowledgeable about GCA/PMR, I guess I have to give it a try as I really haven't been feeling very well on even 20mgs.anymore.

What do you think? I hate the thought of mtx that doesn't kick in till after 6 weeks.I was wondering if there is anyone on here that has had a good experience with mtx.

I don't know about on here but I do know a couple of people who have taken mtx with no problems at all and are sure it has allowed them to reduce their pred dose. They aren't GCA patients though.

How long it takes to kick in varies - and I don't think the 6 weeks is any more likely than any other guess. Some experts say it is as much as a year before they can see any real differences between using and not using it in PMR/GCA. If you can take it without any problems I think it is probably worth trying it - but not if the side effects make you feel even more ill than you do anyway.

I wonder if he thinks there may be something else going on. I imagine that if he wanted to try you with tocilizumab at any point he would also have had to have you "fail" DMARDs.

He sounds a find though - especially having been so up-front about the mess you have been through. 

Thanks Eileen for your input...to me it makes a huge difference.I feel better about giving mtx a try now. But definitely agree that if it makes me feel worse, then what is the point? Im not really thriving ..I may not have noticed before as I was bed bound for so long because of the pelvic fractures but now that that pain has diminished, I really feel the muscle fatigability ..My shoulders hurt from just carrying a handbag and the muscles around around my neck start aching from sitting without supporting my head.When I read on here testimonies of people who do sports and exercise with PMR, I feel like I'll never get there.

This rheumi is very big on markers , he has lots of published papers on the subject.Guess I got lucky because I could have got a 4th year resident instead .

Im sure it'll take time for me to stabilize or GCA might come out of the closet but at least I feel I have a reasonable, accessable rheumatologist now.

"This rheumi is very big on markers" - oh dear, knew there had to be a flaw! Wonder what he'd make of me 

Remember the people doing sport were probably already doing a lot pre-pred - which seems to allow them to continue with it albeit at a lower level. But being able to keep doing sport does make a big difference. I spent 9 months on crutches and had 3 weeks in bed in hospital, all I could do was walk and not much of that. But I kept at it and while I'm not what you would describe as fit I can walk quite a long way now and feel pretty well. Being in bed makes a BIG difference to muscle bulk and fitness. What you could probably benefit from a lot would be hydrotherapy - is there any chance?

PS - weigh that handbag!!!! Bet it is like weightlifting! I found a backpack was far easier to cope with - and I bet you can find a nice leather one in Spain...

Hahaha...No one is perfect I guess...When it comes to PMR, I know it's not good to rely on those markers!

I walked a lot and did weights pre PMR but haven't done a thing for a year, now. I guess I have to build up resistance again like you said somewhere before.

My handbag was not heavy but a back pack seems a good idea!

I will look into the hydrotherapy. Im sure I can get it.

I wasn't immobilized as long as you when I had a broken leg a few years ago, but one thing I did then, which helped as I recovered, was to flex muscles which I couldn't use because I couldn't put weight on the broken limb.  I was told this would help maintain some of the muscle tone.  I bet it would also help increase muscle tone and help your progress as you slowly start to exercise again.  Easy enough to do as you watch tv or some other sedentary activity.

Thank you, Anhaga.Thats a great idea.I've been stretching the leg muscles but not flexing ...I seemed to have developed restless leg syndrome which I had during my pregnancies but never since.Not sure if it's PMR related or a Prednisone side effect.

In any case, I will start the flexing immediately.