Mini flares PMR

[Saffron23]

Hi, I wondered if anyone else experiences mini flare symptoms throughout the day?

I was diagnosed with PMR in Dec 21 aged 54, after struggling with debilitating pain, stiffness and very bad stress for about 2 years.

I was prescribed 15mg pred which helped enormously. But still found I needed to take 2 x 8/500 cocodamol twice daily.

Since the original start at 15 mg I have tried to taper… It’s not been easy and I have gone up and down a bit with the pred. The lowest I got to was 8 mg in Dec 22, but I felt awful and was advised to go back to where I felt better which was 12.5.

I am definitely much much better at 12.5. But I still experience some mini flares throughout the day, in my shoulders,neck & collarbone. They don’t last long but I feel like I am turning to concrete if that makes sense?

If I take some pain relief it goes off. Which the doctor says is ok to do.

Does anyone else get this too? This is my first post here and I am very relieved to of found this really helpful forum. Thanks 😊

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You really shouldn’t be getting mini flares if you are on a high enough dose of Pred - do they come on an any specific time or after any particular activity?

I would hazard a guess that if you didn’t get proper relief at 15mg that should be been increased or you left on that dose for a longer time…but it’s too late to do anything about now. But it does beg the question has your PMR ever been fully under control.

Maybe have a read through this - and take note if the links re pacing yourself…

healthunlocked.com/pmrgcauk...

[Saffron23 in reply to DorsetLady]

Thanks for your answer DorsetLady, I think you may be possibly right regards the original dose. To be honest I really didn’t want to be on a higher dose than 15. My doctor would of liked me to be higher. The doctors were also very keen that I come down in 2.5 increments which failed every time, all too much at once. Hence I now come down 1 mg at a time. The mini flares are generally brought on when I am a little anxious, stressed, tired, overwhelmed.

I will have a look at the links you have posted, thanks

[DorsetLady PMRGCAuk volunteer in reply to Saffron23]

Rather a chequered time so far then…. And yes please do read up on pacing etc… which you may be able to do something about, stress is another matter… but every little helps..

[SnazzyD in reply to Saffron23]

I’m wondering if these flares during the day that come and go might be something else on top of the possibility that the PMR inflammation is still grumbling. I am often to be found on here going on about the Sternokleidomastoid muscles that are often the first to squeak when there is stress about, especially if one has muscle weakening from the Pred after some months. The collar bone is one of the attachment points. I’ve found that it is essential to keep on top of this to avoid the GCA/PMR flare scares that occur simply because of stress postures I take up such as slightly raising and holding my right shoulder. Have a read of this but there is a load of references to it on the internet.

healthline.com/health/stern...

2.5mg increments were way too big for me. I was lucky in that I had so few appointments offered that I was left to my own devices for months on end.

[Saffron23 in reply to SnazzyD]

Thank you SnazzyD for your reply, you could be right I do tense up in the shoulder & collarbone area when stress is about. Learning to push away that overwhelmed feeling does help. Originally I had a untreated frozen shoulder that started September 2019 along with huge family stress too. Then in June 2020 during Covid I was offered a steroid injection that was then cancelled by my surgery due to it possibly weakening my immune system. So I battled on taking over the counter meds, had some physio in July 21 but eventually the pain & stiffness spread, shoulders, neck, hips…then PMR was diagnosed in Dec 21, after inflammatory marker blood tests were done.

I will have a read of your attached link, thanks again

[PMRpro Ambassador]

Hi and welcome.

I'd say that whatever it is that is causing it - it isn't directly PMR. It is very unusual for pain killers to help PMR pain. Myofascial pain syndrome - which CAN be part of PMR - could fit the bill and sternocleidomastoid pain fits in that category too.

I think doctors so explain that by going higher to start, you won't stay there and in fact you may well get lower sooner and more easily.

[Saffron23 in reply to PMRpro]

Thank you PMRpro, your reply is appreciated. I will have a look into Myofascial pain syndrome, and yes perhaps if it was explained in the beginning that going higher would possibly entail an easier lowering , I may of been persuaded to of done just that. Hey ho!

[PMRpro Ambassador in reply to Saffron23]

Hey ho indeed!!!!

[SheffieldJane]

In addition to possibly under dosing as DorsetLady explains you may also be overdoing things through the day. You are ill with a significant autoimmune disease and must rest. An afternoon nap is a very good idea and periods of the day, just with your feet up. Coddle yourself.

[Saffron23 in reply to SheffieldJane]

Thank you Sheffield Jane, you are right I don’t rest enough! My day starts early, I don’t sleep terribly well, have been awake since 3am this morning.And yes I suppose I pack a lot into my day, always busy. I am tired. Time to look after & concentrate on me.

[Floridafan in reply to Saffron23]

I agree with Sheffield Jane, you could be over doing things. I started at 15mg at the end of 2018 and have now reduced to 2.5mg but throughout my tapering I have noticed slight pain when I begin to overdo things. If I stop and rest for 10 to 30 minutes it means I can then carry on with the task. It’s usually housework, gardening related, cleaning windows, vacuuming, digging etc., anything that requires repetitive motion. I’ve learnt to pace myself now but sometimes I just want to finish what I’m doing despite the discomfort but it really just isn’t worth it in the end

[Saffron23 in reply to Floridafan]

Thank you Floridafan, I completely agree. I am doing too much physically whilst also trying to be emotional support mentally for a family member (whilst it’s so much better than it was) I think it has added to me becoming unwell.

It’s going to be a long journey, pacing myself and just switching off a bit will probably be very helpful.

[Zebedee44]

I think Sheffield Jane has hit the nail on the head, you are doing too much at a dose which is only just controlling the pain. I have been there too, and still experience what I call “break through” pain if I overdo it and have stress at the same time.

In me I think there is a constant current of stress flowing through me which is easily exacerbated by additional anxieties, which is probably why after seven years I am still at 6.5mg pred . My lifestyle is physically demanding with my ponies and my body often reminds me that I should pace myself.

I wouldn’t call it a flare, but the “breakthrough” pain occurs in the classic PMR parts of my body, and for me includes pain in my crutch, tailbone, rib cage and jaw. I can push through it and definitely fine that paracetamol works for me, but it is better for me if I take note and stop pushing myself.

Does any of this ring a bell? best wishes, Chrissie

[Saffron23 in reply to Zebedee44]

Hi Chrissie, the bells are ringing! I think you and SheffieldJane are absolutely right! Sometimes it takes someone who’s been there to make you realise why you are feeling like you do!

And I suppose it is better described as breakthrough pain, that’s absolutely what it is! When I was at 8mg in December I was experiencing pain in my shoulders, collarbone, neck, back and ribs. Since upping the pred the back and rib pain has got better.

I hate taking the pred and I am just 1 year in. Keep smiling, go steady and thank you 😊

[DorsetLady PMRGCAuk volunteer in reply to Saffron23]

Why do you hate taking Pred?.. it's the only thing that is going to give you relief from PMR symptoms.

You need to look on it [if not as a friend exactly] as a helper...

[Saffron23 in reply to DorsetLady]

I know I have to remember that all medication has side effects BUT they also have ‘effects’. And yes you are right, they have helped greatly.

Another question, I have not had the 4th covid vaccine yet. Various reasons, not feeling 100% or having covid in July 22.

I am now scheduled in the next week but suppose I feel a little worried about it as I wasn’t yet diagnosed with PMR when I had the last 3 (last vaccine in Nov 21). I understand taking Pred weakens my immunity. My doctor says I should have it. Maybe I am overthinking it. I am generally a very logical, sensible no faffing about individual!

[DorsetLady PMRGCAuk volunteer in reply to Saffron23]

Your doctor is correct....Pred dampens down your immune system. Doesn't mean you are more likely to get Covid, but might make it more difficult to recover from it, if you do. ..and as we know, just because you've already had doesn't mean you won't get it again.

Sensible to keep your vaccines up to date... just be aware you may feel "it" more with PMR.. but better that than catch Covid in my opinion.

[PMRpro Ambassador in reply to Saffron23]

I had a tiny flare with the second Moderna jab and nothing else with any of the others. I have another medical problem that didn't like the bivalent one this last time but the PMR was fine about it!

[Saffron23 in reply to PMRpro]

Thank you for your reply, everyone has been so helpful & friendly, I really appreciate it.