Still trying to understand this PMR?.

[Musiclady18]

I was “diagnosed” with PMR in November 2018, started taking prednisone. This week o I will finally receive a 2nd opinion. My understanding is that the prednisone takes care of the inflammation but what then causes the pain, I thought it was the inflammation that causes the pain?

From this great forum, thanks to all of you, I have come to realize my rheumy was tapering me far too quickly, I went from 30 mg to 2.5 mg December to March? Just kept telling me I had PMR cause I was old, 61??

Went back up to 4 mg rheumy orders, still pain and then up to 10 mg of prednisone rheumy’s orders, rheumy’s orders said 2 wks but I was still in pain. It has now been 1 mth and I still awake with pain in shoulders, hands, wrists, elbows, fingers so I have continued it. In fact the other night I decided to go up 1 mg at supper to see if that would help with my am wake up, but no luck?

[DorsetLady PMRGCAuk volunteer]

The inflammation does cause the pain. What a lot of doctors don’t explain is the high dose of Pred mops up the accrued inflammation in your body pre diagnosis, but the inflammation continues to be produced every day - so you need to take ENOUGH Pred every day to counteract that. And continues to be as long as you have the underlying illness - Pred does nothing for that per se.

Your tapering regime means you have gone below the level you need on a day by day basis.

If you haven’t already read this link, please do -

healthunlocked.com/pmrgcauk...

[piglette]

All I could do is gasp at your reduction in just four months. Your PMR must have had a heyday. Who suggested such a fast reduction?

[Musiclady18 in reply to piglette]

My rheumy originally had me at 30 mg then down to 15 in 2 wks then down to 10 mgs in 2 wks later, then told me I tapered tooooooooo fast (his instructions) so then said stay on 10 mgs for 1 mth, go to 5 mgs for 1 mth then off?? I, on the advice of a friend, went from 5 to 2.5 mgs ? The rheumy wanted me to go from 5 mgs to 0 mgs. That’s when I had pain and then went up to 4 mg then to 10 mgs and now I am adding 1 mg, advice of myself and thanks to this forum, thanks to all, you speak from your experience!

I am now thinking I may need to go higher as I still wake with pain, just like 8 mths ago? The rheumy taper was so off, I feel so confused at this point?

I am currently at 10 mgs with breakfast and 1 mg at supper and still have pain so what would the forum say??

So disapppointed with 1st rheumy as he says I am old hence I have PMR, 61 yrs?? Tapering instructions he keeps changing and he has dismissed all of my concerns. I am still trying to function as an elementary arts teacher, music, dance, drama.

[Hidden in reply to Musiclady18]

I still don't understand his strategy. What does rheumi think he is treating. As long as he tells you ...we want you off pred to test for X ok. But that reduction is RIDICULOUS. Your poor body and you. Hope the 2nd rheumi uses better diagnostic and treatment protocols.🌻

[piglette in reply to Musiclady18]

It is a pity some doctors do not understand the medication they are prescribing. No wonder we are having trouble in this country with incorrect medications being given out. Not to mention the suffering of the poor patients.

[Soraya_PMR]

My suggestion: pretend all that daft upping and downing with pred didn’t happen. Start again. 15mg for 4 weeks, then if pain gone drop to 14mg. You’ve got to get on top of the accumulated inflammation plus allow enough pred to keep it at bay. Yo-yoing notoriously makes tapers incredibly difficult.

Take a breath. Start again. But please, let the pred do its thing, you have to do the REST. You can’t carry on as if nothing is wrong.

[jinasc]

Yes, I would echo Soraya, try 15mg and set what happens, yo-yoing the dosage is a very very bad idea. It should be slow and steady and not undertaken until the initial inflammation is calmed down. PMR impairs the supply of oxygen to the muscles and that causes pain.

Try and take your tablets earlier, say you wake up anytime after 2am, cuppa, slice of bread, tablets, go back to sleep - let them get into your system. When you wake up - warm shower and slowly does it.

[PMRpro Ambassador]

Pain with PMR doesn't always go away entirely with pred - there are add-ons which many people experience. It only deals with the inflammation - so you need enough, too low a dose and you might as well not take any. Eventually you will get back to the same point you were before. And the actual disease process continues, unaffected by the pred. It makes you feel as if you have flu - and leaves your muscles intolerant of acute exercise and easily fatigued. That aspect is up to you to manage - with pacing and resting.

Your rheumatologist obviously hasn't the slightest clue about PMR - I'd be on the hunt for someone who is at least prepared to read the medical literature!

We have people told they can't have PMR at 61, they are too young. The AVERAGE age of diagnosis is 72 - the older you are, the more likely you may have PMR but anyone over 50 can have it, and younger. They can't have it all ways, however much they would like.

You need to go back to 15mg at least. The messing about has probably made it harder - but you need the lowest dose that manages the symptoms, stick there for a month at the very least, preferably 6 weeks.

Look at this for a much more reasonable approach:

rcpe.ac.uk/sites/default/fi...

and look at their timetable. I think this is absolutely the bottom end of speed and dose. 20mg is probably better - but that said, 15mg can work, it did for me. The timetable however didn't!! Everyone is different - but not so different that what your doctor proposed would work for more than the odd patient.

[HeronNS]

Just a little footnote - on one thread I've read today a patient is considered too young to have PMR at age 54, but you, at age 61, are considered old! Sigh.

Yes, the best way forward is to try to put the last few months behind you. And you will need to somehow find a way to rest. If you can manage to schedule in periods of rest equal to your periods of activity this will be the best thing. If you are teaching in a school, then there may be times when you'll simply have to find a quiet place, even if it means giving up that few minutes in the staff room where people who aren't struggling to control an autoimmune disease can decompress and share their day with each other. Good luck!

[SheffieldJane]

Oh dear! Your second paragraph explains why you still have pain. That taper was far too steep. My start dose was 20 mgs. I stayed there for about 6 weeks then crept down to 17.5 then 15 mgs then reduced by 1 mg until I got to 10 mgs. Each drop was separated by about a month. I then reduced by 0.5 mgs from 10 onwards always listening to my body to ensure that my symptoms were stable. Get a pill cutter for the 0.5. I am currently at 5 mgs and my body is warning me to stay there. I have had diagnosed PMR for 3 years and 4 months. During this time pain and stiffness has been minimal but fatigue has warranted daytime naps. I can’t understand the advice you’ve had, I would have been in agony!

[Pristina]

Hi, my Rheumy has done same thing, started at 30 and down by 5 every week, on day two of zero now, BUT he wants me off pred when i see him this Thursday so he can be sure if it is PMR or not.

Your rheumy doesnt seem to have any plan in place for you - i agree with others , perhaps seek another referral. Good luck