A little lost in this new world.

[Celebrant]

PMR is new to me --since Nov 0f 2017. I am at present on 10 mg -the amount the rheumy wants. It has helped but not beat the pain and stiffness into submission. I am supposed to drop to 7 1/2 mg. tom. and go for a month on that. Quite frankly I am a bit frightened to do that as if I still hurt, we can't have gotten all the inflammation. I think I need some encouraging words.

[PMRpro Ambassador]

The only encouragement I can give you is "Find a new doctor". He is ignoring the international guidelines for best practice in managing PMR.

HE may want you at 10mg - but it isn't his pain or his life he is messing up.

These are the international guidelines for managing PMR:

rheumatology.org/Portals/0/...

The starting dose should be the "lowest effective dose in the range 12.5-25mg/day".

If you do what he wants - you risk being back at the start. I do not understand WHY they diagnose PMR when they have no intention of using best practice and attempting to get patients of pred before they are ready.

If long term lowdose pred (once you get there) is good enough for a Mayo Clinic renowned rheumatologist, it is good enough for anyone else:

medpagetoday.com/rheumatolo...

[CathyJJJJJ in reply to PMRpro]

Totally agree about long term low dose Pred when I get to that point....

[Hidden]

Your worries are based on solid foundation at this stage after diagnosis. I had a similar pattern after my dx....dropped 1mg a month and by 8mg i was in a worse state. You need to tell Dr you are still having pain and stiffness and then go up to last dose that worked. There are lots of resources on the forum and pmrpro has posted a few articles regarding pred and treatment of pmr. I am sure people will be along soon to advise. But I would ask Dr to treat your symptoms and adjust reduction process so you don't have to suffer unnecessarily. It's not that you should be entirely pain free but you shouldn't be in pain that impacts on your life if that makes sense.

[Hidden]

Ha! Pmrpro beat me to it 😂

Must type faster 😂😂

[Pongo13]

Lost no longer! All the answers are here. I started pred in Nov 17 too (PMR) the dr put me on 30mg. Am now at 15mg. All my questions have been answered by the professionals here; I am constantly learning more and more about this condition. I don't do Facebook any more...I start the day with this forum (....and end the day too). It is such a great support. I hope you feel cheered up by the time you get to sleep tonight.

[Celebrant]

my thanks to you all. Like most of you I have been relatively healthy though my life and am feeling more than a bit pissy about developing this at 70

[Oldman-1 in reply to Celebrant]

Can I just add my symptoms started at 74. One day I was fit, next, woke up feeling like I was in ICU after a bash with a Bus. Started on 20 mgs a day, now on 12,5. Reducing 1mg a month.

[yogabonnie in reply to Celebrant]

I know! I got it in Nov. was on 15 and then to 12.5 now at 11 and going to drop 1 mg a month... That is just what I said. As if being over 70 isn't enough!!! But OH. I am grateful this is treatable. and my SKIN is so lovely..all my life I've had the kind of skin you can't try on clothes at the store!! so dry and cracked! and NOW. if I could I would NEVER go off prednisone ..except for every other side effect!! I LOVE your photo.

[PaulinaCanada in reply to Celebrant]

Oh I agree with you I was so angry, when my pain started and not knowing what was wrong. I thought great, here I am lost weight and eating healthy to enjoy my retirement in the future, then getting hit by this road block. But I have tons of support from my GP, Rheumo and most of all my best friend my husband.

[AmberAliona in reply to PaulinaCanada]

You're so lucky. My GP is rarely bothered apart from asking if I'm still tapering and where am I at with that. I live in a flat with my 3 year old dog. I don't see many people, but I have just one friend who truly cares. My sons other friends are lovely, but do not understand what life with PMR is like. I'm sorry to sound dismal, but that's how it is.

[Soraya_PMR]

When did rheum indicate that he expected you to drop from 10mg to 7.5? A month or so ago? Have you given him any feedback about the possible/maybe/partial success of the drop to 10? If he has no feedback he can’t amend ‘his plan’. (And bear in mind, HIS plan, YOUR plan, are both trumped by PMR’s plan. PMR holds all the aces, the little bug......!)

My rheum (Sept 17) wanted me to drop from 14/15 to 12.5. But she did add that I might not be able to do it. I did try, by day 9 I gave up, went back to 15 for a short ‘clear out’, then did 14, 13, 12.5, 12, 11 and then flared at 10, having tried to do the drops too quickly. I’m back at 10 again now. I’m no further forward than I would have been had I dropped by 1mg per month from the outset. But these doctors insist, I tried, it bit ME in the @rse! (Not them! ME with the sore bum, hips, shoulders, arms.) I’m debating my drop to 9mg next week. Might do a 9/10 toggle to test the waters. (I started at 20 April 2017)

I am loving your head feathers! Might adopt this look myself as I’m a bit of a ‘feather-head’ currently. And the colours of your artwork are divine

[Celebrant in reply to Soraya_PMR]

Truly, my first art work--my friends are tying to find the artist in me--sad--trying to change a pig's ear to a silk purse--and I maintain every woman should have a tiara

[SheffieldJane]

I see that everybody has said what I would have said, so I will just say, I love the photo and is that your art work? It’s beautiful. 🦅

[Sandy1947]

At onset of PMR this past June I got all the way up to 25 md Pred before relief. Now I’m down to 11 starting 10 on Sunday. Some days are worse than others but exercise, cardio and weights usually works out the bugs.

I’m no Dr. but 10 to 7.5 seems drastic. Why ignore 9, 8, 7? As fellow sufferers share, why rush? Accept slow as the new normal.

[Mrsd12f]

Hi Celebrant! You are more or less two years behind me (diagnosed November 2015).

I started on 15mg for 6 weeks and then 12.5 for another six. The next step was meant to be to 10mg, but I found this too much and went back up to 11 and then down, which worked very well. Luckily, no one has nagged me too much and I've had only gentle hints that I "need to get off the steroids". I've had a couple of flares, but I'm almost down to 6mg, now. I'm seeing my rheumatologist on Monday, but determined not to be brow-beaten - not that any of the Rheumatology department has ever done so.

As everyone else will tell you, 10 to 7.5, while you are still in pain at 10 seems ridiculous. Thank heaven for our "aunties"!

Good luck!

[Hollyseden in reply to Mrsd12f]

Yes thank heavens for our wise aunties 😊

[SusanEleven]

My rheumy starts all her PMR patients at 10mg which was an effective starting dose for me. But she quickly adjusts the amount if patients are not getting enough relief. Some go to 15mg or higher; one person only found relief at 30mg. (She and I talk about this stuff a lot.)

That said, my first taper of 1mg was too much for me. I can’t imagine you going to 7.5 from 10. Once I learned about the slow reduction plans and told her, she was totally supportive. She is a rare bird who listens and is open minded. I am at 4mg now after two years. After I struggled at 3.5 she suggested I go back to 4 and stop tapering for the foreseeable future.