Flares ??

[Pastamama]

hello folks , feel this is a dumb question but still need to ask it ! Is a flare going back to initial pain manifestation of PMR ie struggling to get out of bed , lift arms , sitting down etc wearing off by the the afternoon ? I’m now on 10mg pred , having reduced from 12/1/2 . Since being on 15mg and below my arms slightly ache all the time . On a scale of 1-10 , the discomfort is 1 . Discussed this with rheumatologist, he said he didn’t know why I was aching and to carry on as it wasn’t affecting mobility etc . Any thoughts would be much appreciated. Many thanks

[DorsetLady PMRGCAuk volunteer]

This link contains explanation of a flare -

healthunlocked.com/pmrgcauk...

Are you saying you have always had these aches even at 15mg? You did mention in fIrst post you wondered if 15mg was enough - was it ever increased? Have they got any worse over time? Have you tried something like paracetamol to see if that makes any difference?

[Pastamama in reply to DorsetLady]

Hello Dorset Lady , just responded with more info . No I haven’t tried paracetamol, good idea . Thank you

[DorsetLady PMRGCAuk volunteer in reply to Pastamama]

Have to agree with PMRpro - on GP’s statement [bonkers and needs a quick slap] and with comments on is it actually PMR. From what you say, maybe not entirely PMR. Plus a return to 20mg might resolve that query.

[Pastamama in reply to DorsetLady]

Will suggest to rheumatologist to go back to 20 mg if remains the same , many thanks

[seamaid in reply to Pastamama]

HI , I wake up every morning as stiff as a board in hips and back,like you debated if flare was coming , so, took two paracetamol and 1/2 an hour later felt a lot looser, working on the premise that IF paracetamol helps the pain it is NOT a flare, , if Paracetamol does not help it probably is a flare and so work from there . now 3 years down and now routinely taking the two paras . this simple rule hes helped on more than one occasion , hope you get sorted very soon, /

[PMRpro Ambassador]

"Discussed this with rheumatologist, he said he didn’t know why I was aching and to carry on as it wasn’t affecting mobility etc"

The very simple answer is that you have probably never been on quite enough pred to entirely clear out the accumulated inflammation that was the cause of the PMR symptoms in the first place. Bicep pain is most likely due to tendinitis and is common in PMR. Has it remained constant since you have been tapering?

There are many stages of a flare - the first niggles that tell you that the dose you are on is barely enough to deal with the daily new batch of inflammation, and it takes until afternoon to feel better after a rough morning. Then those niggles consolidate to make something more obvious. And that process may continue until, because you didn't change anything, you are back where you started unable to lift arms and get out of bed. Since you are on pred this time though, it can take a long time to build up to that.

[Pastamama in reply to PMRpro]

Thank you PMR pro for you response . I was on 40mg for 28days as had suspected GCA, reducing since then . On the higher dose no pain at all ( to be expected I believe ) Noticed niggles when reduced to 15mg . As I said , it’s there all the time . Doesn’t make it worse if I garden, do physical stuff , drive or better if I do nothing . Honestly don’t know how to describe it , slight stinging sensation 🤷‍♀️ . Saw the GP last week , he said he would be reducing steroid dose every two weeks as it’s a “dirty”drug . I told him I’d stick with the rheumatologists programme ! Back of my mind to see if I can get an appointment with the rheumatologist highly recommended on this forum , Rob Hughes (?) or just see how I go . As you can imagine I don’t want to jeopardise recovery . A quandry ….. thank you again for your time . Best .

[PMRpro Ambassador in reply to Pastamama]

"Saw the GP last week , he said he would be reducing steroid dose every two weeks as it’s a “dirty”drug "

What a seriously silly statement!!! I despair, I really do!

I assume the rheumy said it is probably PMR (definitive diagnoses are impossible unless you have had a PET-CT that shows inflammation in specific places) so exactly WHY is the GP countermanding his tapering regimen? "Dirty drug" is a biased opinion from an person uneducated in the contect of PMR - if you have anything on the PMR/LVV/GCA spectrum then you NEED pred - in the UK there is no immediately available alternative that works fully.

If you had a month at 40mg then that was plenty of time to sort out PMR. Your extra comments do make me think it is unlikely to be that - but some patients DON'T become totally free from pain at lower doses, which is disappointing if you were pain-free at 40 and down to 15mg. I wonder if it was the size of the step at 20 to 15mg? With your GP's attitude what I would do is probably difficult but I would go back to 20mg until the pain/feeling is gone and then drop 2,5mg at a time and see if you are better doing that. Top experts say the tapering step shouldn't be more than 10% of the current dose - most people manage 2.5mg at a time at this level down to 15mg but not all. Some have to do 1mg at a time even here.

Forgot to ask - does paracetamol help the arm discomfort?

[Pastamama in reply to PMRpro]

Thank you for the info . DL suggested paracetamol, I hadn’t thought of that , will give it a go . I reduced from 20 to 17 1/2 then 15 . As you said doesn’t suit all. I may be one who needs a slower reduction . I f no joy with parachute or even paracetamol 😆I’ll contact the rheumatology department with that suggestion . Wondering if worthwhile looking into a PET-CT scan ? Very valuable information as always , much appreciated.

[PMRpro Ambassador in reply to Pastamama]

Yes - saw she'd suggested that after I;d finished my reply!

PET-CT probably wouldn't show much at the dose of pred you are on - and they are seriously expensive privately! You were OK at 17,5mg then? How often are you reducing the dose?

[Pastamama in reply to PMRpro]

Yep , OK at 17.5 , then reduced , 15, 12.5 now on 10 . Plan is to reduce to 9 in a couple of weeks . Won’t bother with the scan then , save my pennies !

[DorsetLady PMRGCAuk volunteer in reply to Pastamama]

No reducing for time being….

[PMRpro Ambassador in reply to Pastamama]

Tough one - especially if you are sure the symptoms aren't worsening.

[Pastamama in reply to PMRpro]

Will do as you’ve advised re paracetamol. Will also monitor very closely . Best ..

[Polygolfer]

It’s strange your doctor did not ask you about trying simple pain killers. Aches and pains can be part of normal daily life, at any age but definitely after a certain age, it’s not necessarily PMR or a flare… upping steroids will probably numb your pains but as your doctor rather inadequately said, at a cost. Steroids are not to be glorified or vilified, they serve a quite specific purpose and the key is to use them within that purpose. Their misuse can become a problem, but most times, doctors will warn you and manage your use of steroids so as to avoid that from happening.

[camshall]

I have bicep pain, a dull ache really. Been there for ages, while I taper down, left side mainly. Has not changed in 6 months, just put up with it, can still raise my arms above my head etc. I have not tried any paracetamol, not sure i want to.

[Zebedee44]

Hi, reading your profile I would suggest that your taper is going a bit fast and that by tapering every two weeks you have already overshot the dose you need to keep your PMR under control.

The exact same thing happened to me when I started taking pred and I followed my GP’s instructions as you have. Eight months later It was a different younger doctor who identified that I had tapered too fast and I went back to 15mg and started again, splitting the dose to achieve best effect. I kept daily notes which recorded ongoing pain but at least I could function. Kate Gilbert’s excellent book mentions taking paracetamol daily and it also helped.

It was a tough first year learning how to manage my life with PMR but eventually I found 8mg was my happy place and gave me a good QOL. I stayed there for four years while going through some challenging times and occasional mild flares. It has taken a further three years to negotiate my way down to 3.5mg.

I have come to believe that doctors’ fear of pred is justified but unhelpful. The doctor who diagnosed me didn’t seem to have a clue, since then I have moved a few times and seen other doctors and some show very little interest. My current doctor is supportive and accepting.

This forum has held my hand throughout a journey which has been longer and far more complex than I expected and is full of wisdom and experience of how to live with the “dirty drug”. Best wishes, xx

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