Since diagnosis I have been attempted to taper - I got down to 9 (from 15 - 12.5 - 10 ) and had 2 flares and started again and that time I got down to 10 mg and had a bad flare in my hand - so back to 15 and then down to 12.5 and on Thursday evening my right hand and elbow felt very crampy but NOT the intensity of pain or incapacity of any of my PMR attacks, but last night it blew up into a full flare.
What I'm trying to ask is - why is this happening at 12.5 mg and what should I do now?
This is the only place where I can get any help and advice and really would appreciate either. The hand is not as bad today but that is par for my course, my attacks usually last 2-3 days but get worse during the day
Thanks in advance
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Theziggy
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Do you mean your attack last 2 to 3 days and then you are okay, or do you mean after 2 or 3 days you increase, and therefore the pain goes?
That might sound a silly question but I'm trying to ascertain whether it is a flare or only steroid withdrawal. Also how quickly do the symptoms return? if virtually straight away after drop then more likely to be SW, if a week or so once you've been on dose then likely to be a flare.
Could also be that the inflammation has never been completely cleared - even at 15mg, that level may only just be enough, so every time you drop below then the daily production of inflammation builds up again.
How are you reducing - overnight? Might be worth trying a slower taper. see -
I mean that when I get an attack/flare that I increase the pred again to 15 and start tapering again. This time myself and my GP thought I could taper from 12.5 to 11 and I thought of doing the taper the DSNS 26 day plan - and then - a flare at 12.5
It happens usually after a week on a new dose. I am aware that I don't know if it is PMR or Steroid Withdrawal
If it comes on about a week after reducing then you say it’s PMR and that new dose is not enough.
As previously stated think it’s still lurking and any reduction is enough to let it flare again.
PMRpro has advised on other problems, but as always if it is PMR then you need to take the dose YOU need - not what doctor thinks you need! Even more relevant if you have other things going on!
And you have to bear in mind that every time you flare you are effectively going back to the start. If you reduced in smaller steps then you probably wouldn't have flared more than once, at most twice. The worst thing that can happen is to get into a yoyo pattern with the dose - because it become increasingly difficult to get the inflammation under control (nobody knows why, it is just so). You need to clear it out and not let it come back to a noticeable level by reacting quickly if it happens.
To add to DL's comment - at the very least I think you are expecting too much to be able to go from 15 to 12.5 to 10. And I don't CARE what your doctor tells you everyone else does. I bet they don't.
But the other question is - is there something going on in that elbow? I had what I thought was repetitive strain injury that ran diagnonally from the outside of my elbow to the inside of my wrist. It eventually cleared with pred but it did take months to go altogether. We eventually decided it had been tenosynovitis - from the PMR.
I have a bit of trouble with tingling in the little and ring fingers - it is usually because of having my shoulder at the wrong angle since it goes if I move.
No I didn't see the bit you added (obviously I have now) I do notice that my middle finger on my right hand is fatter than the other fingers - and fatter than the middle finger on my left hand too,
Middle finger is usually associated with carpal tunnel - but it definitely needs a bit of thought by someone, especially as you say it stops you driving.
No, the thicker finger doesn't affect me at all, it is pretty much cosmetic and a bit of a curiosity to me. It is just when a flare (or pred withdrawal ???) affects my hand or arm or leg that I can't drive - just physically impossible from a pain point of view.
Hello Theziggy, I think PMRPro is suggesting that your hand and elbow symptoms could add up to a non primary PMR condition that might require different treatment. It’s worth investigating.
I have been/am in the same position as you. Felt good on 12 1/2 and tapered to 91/2. Am doing alternate days at moment of 9 And 9 1/2. Don't seem to move at this point. Have extremely good days and not so good. Very frustrating
I was aiming to taper from 12.5 to 11 using the 26 week DSNS plan starting on the 3rd December, and still plan to try that
It is just so frustrating e.g. that I can't drive for any considerable distance as I could flare in the late morning /afternoon and may be unable to drive the return journey
After my 2nd last flare on 19th October with the swollen hand I upped to 15 mg going down to 12.5 mg on 5th Nov with a view to using DSNS 26 day plan to go from 12.5 to 11mg starting on 3rd Dec.
However then I had a flare on 23nd Nov, which had one day of a half blown flare which increased to full blown next day and abated on 26th. I didn't increase my dose.
Woke up this morning with pain in right shoulder, but not incapacitating. Then this evening my right groin is sore and tender, which is usually a precurseur of a flare/attack, right shoulder still painful but not overly.
I await tomorrow to see if it gets full blown.
However, what should I do?
increase the pred to 15 again or continue with my DSNS plan to decrease from 12.5 to 11, starting next Monday.
Your help is much appreciated as I don't know when I will see my Rheumatologist again, and my GP is not a great help (but is allowing me to control my Tapering).
Thanks in advance. 😎
(edit) I notice that all the taper plans on steroidtaper.azurewebsites.... except the 3 DSNS plans and Dorset Lady's slow taper plan all jump from 15mg to 12.5 and then to 10. Would 15 to 13.5 to 12 to 11 to 10 and so on be acceptable values for a DSNS plan?
Is the dx of PMR a confident one? Flares of the sort you are describing aren't a common occurrence in PMR - they sound more like palidromic rheumatism which can present very similarly to PMR in the early stages.
I was diagnosed by my rheumatologist after a five minute examination and slightly raised esr. He seemed confident and to be honest - what did I know.
I do know that from reading through the forum that my PMR seems a bit different form others here. It started with burst of extreme pain stiffness in various areas of my body - shoulder, arm, hand, groin, knee, foot, sometimes two areas at the same time. These could prevent me from walking or driving and doing everyday things and usually lasted about 2 - 3 days before subsiding.
When I first took PMR I was always fine in the morning, but a dull ache in my groin or shoulder throughout the morning could explode into the afternoon into any of those areas.
The flares have followed the same path - usually two days length - don't occur full-blown until afternoon but then they stay constantly for about 2 days.
One of the doctors who examined me mentioned palindromic rheumatism - but didn't go any further leaving it up to the rheumatologist to diagnose.
Thanks PMR, but I have no idea of how to ask for a second opinion.
Your presentation is typical of palindromic rheumatism - an inflammmatory arthritis that inititally comes and goes, the attacks can be hours or days and then disappear until the next time. Eventually it may settle down to form a more typical inflammatory arthritis - and some of them can present very like PMR in the early days with similar stiffness etc. It is thought about 1 in 6 patients with an initial PMR diagnosis have it changed at some point.
So it HAS been thought of - high time to get a second opinion I think and to do that you go to your GP and tell them that this isn't being typical PMR, that someone mentioned PR last time and you have been told that what is happening sounds more like PR than PMR.
Have you a diary of when and what? Make notes, bullet points are good and take them to the doctor when you go to ask (demand nicely) for another opinion.
I am on day 8 of the DSNS 26 day plan, from 12.5 to 11 mg pred, which means essentially I have had 12.5 mg on every day except day 5 when I had 11 mg. Yesterday evening I noticed my left shoulder getting uncomfortable but not full flare pain. But ......... today the pain went down my upper arm and driving this afternoon was not possible. Certain movements cause a lot of pain and it is sore to touch but isn't swollen or red.
Do you think I should I abandon the tapering plan until I see my Rhuemy on 8th Jan and go back to 15 again?
What's the matter with sticking at 12.5mg? I've had a flare, back to 15mg. So every so often I try 14mg instead. But after getting to 3 or 4 consecutive days, some arm-ache that heralds a flare returns slightly. More to the point, although the PMR feels OK, the "atrial fibrillation plus" reappears after 2 days. It is bizarre - but even a tiny amount too little can result in something...
I'd be fine on 14 for the plain PMR - but the increased atrial fibrillation and brief dizzy episodes are just not livable with. The cardiologist is in agreement that the vasculitis of PMR/GCA is closely associated with the cardiac symptoms. She can't offer anything more for the a/f - so we are using the pred!
The flare moved from my shoulder/upper arm (some pain remains) , to my left hand today, I can't clench my fist or hold anything, driving is tough. I took 12.5 this morning and a further 2.5 this evening. May take 15 tomorrow, very disappointed by set back.
I'm not totally convinced it sounds like Palindromic Rheumatism either - NSAIDS never helped it and it doesn't fit all the symptoms for PR. Thanks very much for your help and advice PMRpro it is much appreciated
It does seem to be more like palindromic rheumatism. Though when researching I did find one person who had both PMR and PR !!!
To be honest, I would prefer the PMR than the PR.
Though it seems the first drugs used for PR are NSAIDS, when I first went to my GP with pains that is what I was prescribed and they made no difference at all. Steroids are rarely used for PR. Trouble is I have been on steroids and can't just stop them. Bit miffed about that!
I do have a diary from the very start and can easily make notes from it. It is like starting all over again. But my GP would just refer me to the Rheumatologist whom I am waiting for a new appointment with anyway as he cancelled my last appointment. Which might be quicker than a referral - which in Northern Ireland at the moment, if not deemed urgent, waiting time is about 2 -3 years!!!
So, should I continue with my plan to go from 12.5 to 11 DSNS starting Monday? My shoulder flare got sore - to touch and move but not as excruciatingly painful or incapacitating as a full flare - it was as if the steroids were holding it back!
Not sure I would - until the shoulder calms down. But I can't remember any of the joint pain in PMR being sore to touch - if I'm interpreting what you say correctly. Your GP should agitate for that cancelled appointment to be reinstated asap.
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