Think I have more than just pmr: Hi I am soon to be... - PMRGCAuk

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Think I have more than just pmr

Lisatonn profile image
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Hi I am soon to be 53 and have had pmr for 2 years now. Am down to 2 mg. of prednisone per day....1 in morning and one in the evening. I am now starting to get achy pains in my shoulder, wrist and 2 knuckles on middle finger and ankle...all on my right side. I am starting to think I have some kind of arthritis besides pmr. Any feedback is most appreciated. I am in the States. Thank you!

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Lisatonn profile image
Lisatonn
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jinasc profile image
jinasc

Where you told that PMR just lasts 2 years?

If so you were given incorrect information.

Yes it can and does go into remission around about 2 years. But it can and does go on much longer.

Why are you splitting the 2mg dose?

Have you tried going back up on the pred to where you were when you felt comfortable? It could be that you have just reduced too quickly and this is causing a return of the symptoms.

Sometimes Late Onset Rheumatoid Arthritis (LORA). You can get LORA without having PMR. You need to talk to your medics.

Lassielou profile image
Lassielou

Hello Lisatonn My name is Shelley I was diagnosed with PMR 3 years ago at age 56. I started on 15mg of Prednisolone, got down to 5mg in March last year but had a bad flare, went back up to 8.5mg eventually settling on 7.5mg where I stayed for a year. I am now on 6mg trying to reduce to 5.5mg every 4th day, but like you I have achy pains in my shoulders and knuckles but also in my neck with pains (occasionally) in the top of my arms. I too wonder if there is something else going on?? All my symptoms get worse as the day goes on and as I understand it if they were due to the PMR they would be worse in the morning, but I wonder about this because the awful pain in my arms is exactly the same as when first diagnosed but without the stiffness. I'm sorry I don't have any advice to offer but thought it may be of interest for you to know that someone else has similar symptoms to yourself! This is a very informative site with many experienced and wise fellow sufferers who I am sure will be able to provide you (and I) with some good advice :)

PMRpro profile image
PMRproAmbassador in reply to Lassielou

" I understand it if they were due to the PMR they would be worse in the morning"

There are many rheumies who will try to tell you that - it isn't true. If it gets worse through the day it can be a sign you are simply trying to do too much.

Lassielou profile image
Lassielou in reply to PMRpro

Thank you for your response PMRpro. Would this also be the case if I wake up with no symptoms and also is it likely to be down to PMR if you have pain but no stiffness?

PMRpro profile image
PMRproAmbassador in reply to Lassielou

It can be - everyone is different in how they experience PMR. I had a flare in January - it bore no relationship to anything I'd had before until suddenly I had hip pain! But if you overdo it during the day you are likely to feel something. But as long as you always bear in mind it might NOT be the PMR you'll be fine! You can't blame EVERYTHING on PMR or pred!!

lesley2015 profile image
lesley2015

HI Lisatonn

I have had PMR/GCA diagnosed since June of last year and have struggled to reduce preds down from 40mgs. However, the aches and pains have also changed over the last 3/4 months, I have had different ones -more joint pains - ankles, knees, shoulder blades,, fingers etc.

So I mentioned this on my last Rheumy appointment, he prescribed Arcoxia, which is generally given for Rheumatoid Arthritis, day one on tablets - pain gone by 90%. I still have the pmr/gca and if I over do it I know about it and still suffer from fatigue, but because this pain has been reduced I am more able to monitor the PMR and have finally reduced to 10mgs.

It is not confirmed I have RA, and the Rheumy not tested me until I am off preds, but my body has responded so at last I feel I am heading in the right direction - albeit slowly.

I hope this may be of help to you.

Best wishes to you.

PMRpro profile image
PMRproAmbassador

It's much more likely that the cause of the PMR is still active - it can and does last far longer than 2 years - that is the bottom end of the range! I'm at 12 years and counting - very much the other end of the range but also possible. You probably need a slightly higher dose for the longer term - it doesn't mean you won't get off it, just not yet. Under 5mg is a very low dose and nothing to be concerned at for another year or two.

Ask your doctor about ankylosing spondylitis (AS). My first diagnosis was PMR, then fibromyalgia, and most recently AS. Pain is focused in the lower back, pelvis and hips. And you may have pain in the ankles, heels, or small joints in the hands or feet. Good luck!

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