Flare-up not under control and just don't know wh... - PMRGCAuk

PMRGCAuk

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Flare-up not under control and just don't know what to do

EscapedtoWales profile image
23 Replies

Hi everyone

Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg every 4 weeks rather than every 6 weeks by neurologists and agreed by GP. I did okay reducing every 4 weeks on 9mg and 8mg but have developed a flare-up when I reduced to 7mg. Increased to 12 mg for 2 weeks but flare-up is not under control. Clinical pharmacist said guidance is not to hike up steroids as this would put me at increased risk re: Covid so she said try 1mg at a time. So I have had 1 week on 13mg but the flare-up is still not under control. I am planning to increase to 14mg tomorrow.

My dilemma: I have no idea at what mg of steroids the PMR flare-up will be controlled, so in theory this could go on for weeks. I am in pain and very down as the steroid myopathy has also got worse. Under normal circumstances I assume I would be given a short high dose? I just don't know if I should go against advice and, if I do, what mg to increase to. The clinical pharmacist advised I should be shielding too.

I realise that it is my own personal risk not to take advice - I do trust the pharmacist - but I have been dealing with this flare-up for 3 weeks now and as you will all know it is a PMR is a grim companion and coupled with the steroid myopathy I am feeling pretty low.

Thank you.

23 Replies
SheffieldJane profile image
SheffieldJane

I think you would do better by increasing by 5 mgs at once to see if you can zap this flare up. Creeping up, is not very effective. We are all at risk of Covid and Shielding is designed to keep us safe. 3 weeks is too long to suffer in this way. You need to convince your doctor to prescribe an appropriate dose for your symptoms and something to help the steroid myopathy, if only pain relief.

EscapedtoWales profile image
EscapedtoWales in reply to SheffieldJane

Thank you SheffieldJane - if an additional 5mg worked how long do you think I should stay on it and what should I return to? I was okay on 8mg until the flare-up and am now on 13mg. Thanks :-)

SheffieldJane profile image
SheffieldJane in reply to EscapedtoWales

Some people are able to return to their original dose immediately if they have been on the new dose under 10 days. My body was never sure.

yorkieme profile image
yorkieme

Looks like you have more experience than me regarding this tug of war that we all face but maybe you need to consider a slightly easier fight to win,for example are there any exercises that you can do that might slowly help with muscle repair.Do you feel your focus is too much on getting the dose down after the hard work that you have already put in ? It may not be the case for you but my example to date has been the perfect score of ten in setting the bars too high,then giving my ego a good whack just as a bonus for being silly..

Do whatever to get the pain under control then look at how to accept the challenge.

Apologies if this sounds simplistic but I am keen to learn for my own benefit,sadly I have no info' regarding the numbers/dose level but I could write a book on pain right now and it is completely and utterly debilitating.

Good luck,sometimes the answer is there so I hope you find it.

EscapedtoWales profile image
EscapedtoWales in reply to yorkieme

Thank you Yorkieme. I was rushing the steroid reduction to try and stop the steroid myopathy, which has been totally debilitating, and to try and get back to work. It's backfired big time! I think I do just need to get this pain under control and then start back on a slow reduction and accept the sever weakness that comes from the mypathy. Appreciate your reply.

SnazzyD profile image
SnazzyD

Has your myopathy been considered more severe than the usual muscle wasting expected with steroids? How is it affecting you? The problem with remaining in pain is that you’ll exacerbate the muscle wasting anyway by immobility.

EscapedtoWales profile image
EscapedtoWales in reply to SnazzyD

Yes SnazzyD - it's severe weakness in both upper arms and thighs which came on very quickly at Christmas and is in addition to the usual muscle wasting. At times it is so bad I can't hold a phone or a book and have trouble walking. The neurologists advice is the quicker I get off steroids the better but there was always concern that a quicker reduction regime would result in a flare-up which sadly it has. Thank you for your reply.

PMRpro profile image
PMRproAmbassador

Frankly I would like to see the clinical guidance for reducing pred when you require it for a medical condition. I somehow think the desperation on the part of some doctors to get patients to a low dose or, even worse, off pred is totally misplaced. They are using steroids in the earlier stages of hospitalisation with Covid-19 - they did here in Italy and now doctors in Texas are saying the same.

It is all very well telling you to reduce faster - all that will do is exactly what is happening, the flare will get worse. And that will increase your risk of you were to catch Covid-19. Creeping up the dose rarely works - the inflammation builds up faster than the increase of dose deals with it. Better would be to try a few days of considerably more - add 5mg, you would know quickly if it is enough to start helping.

I also had steroid myopathy - one of the things that SHOULD be done is preventative exercises. They do work.

Must dash - sorry ...

EscapedtoWales profile image
EscapedtoWales in reply to PMRpro

Thank you for your reply. Appreciate your time and advice.

EscapedtoWales profile image
EscapedtoWales in reply to PMRpro

Hi PMRpro.

Am hoping you might advise me please? Been on the additional 5mg (18mg in total) a week tomorrow and although I am loads better I can still feel the inflammation is there. Would you advise I stay on the 18mg a bit longer? And if the pain goes what would you advise I reduce to? To summarise:

Reduced okay to 8mg. Got flare up when I reduced to 7mg. Went up to 12mg but no improvement and then 13mg with no improvement. Finally increased an additional 5mg to 18mg.

I really appreciate your advice - feel no-one at my GP practice really understands PMR and am just at a loss what to do :-( Thank you.

PMRpro profile image
PMRproAmbassador in reply to EscapedtoWales

We aren't allowed to give medical advice like that - but you can have another few days at that level without having problems reducing. But needing so much extra does suggest you are having a flare in disease activity - not just a flare because you overshot the dose you required. If it were me I certainly wouldn't reduce below 10mg - and maybe even that won;t be enough.

Does anyone at the GP practice know what you have been doing? If not you are going to have problems with supplies sooner or later.

EscapedtoWales profile image
EscapedtoWales in reply to PMRpro

Thanks for your quick reply. The clinical pharmacist has been overseeing me up until she suggested 'take it slowly and only increase 1mg at a time' (12mg to 13mg) which saw the PMR get worse rather than improve and I posted here. I do like the clinical pharmacist and do feel she has a better understanding than the GPs I have spoken to at the practice. Her 'take it slowly' 1mg increase came from the guidance they have been given to try and keep patients off high doses of steroids because of CV. I will get back to her just so she knows what I am doing. Thanks again.

PMRpro profile image
PMRproAmbassador in reply to EscapedtoWales

Creeping up just never works ...

But that does sound as if something has really kicked the gorilla into life - other than Covid have you been up to anything? ;)

EscapedtoWales profile image
EscapedtoWales in reply to PMRpro

No - life has been pretty chilled. I have remained self-isolating throughout and generally been taking it easy enjoying sitting in the garden. I was also feeling happy as the steroid myopathy was easing and I could see that I would be able to return to work. Sadly I am now feeling very stressed/upset with PMR symptoms and worsening steroid myopathy and the prospect (based on my experience) that it may be another 6 months now until I am somewhere near to where I was a few weeks back and there is little prospect of me returning to work before my contract ends at the end of September. Just trying to come to a point of acceptance that it is what it is.

PMRpro profile image
PMRproAmbassador in reply to EscapedtoWales

And it makes a downward spiral ...

daworm profile image
daworm in reply to PMRpro

my dr didn't know much about PMR and admitted it, I showed him different articles that I found out about by searching the web and using this forum...he wasn't bothered by my advise at all and we worked it out together...when I told him at the start 15mg wasn't hacking it "we" agreed to try 20..that was his limit though, but it worked..he allowed me to taper as I saw fit....just saying this to show that not all rheumy's or Drs seem to know that much about PMR and just go by "prednisone is dangerous and you should hurry off of it" syndrome....certainly not how it should be handled...this forum is a very valuable tool in my opinion..

PMRpro profile image
PMRproAmbassador in reply to daworm

The best rheumies I know all say the same: it has to be a shared management plan. Done well the side effects can be minimised and the patient has a decent life. And that is what it is about: Quality Of Life.

SheffieldJane profile image
SheffieldJane

A real Hobson’s choice, easy for him to say. The way you describe it reminds me of my symptoms before PMR diagnosis. I couldn’t open bottles or jars etc. I would drop my book on my face, reading in bed.

The” quicker “ might actually mean properly tapering, any thing else has consequences. I wonder if you might be a special case for something like Tocilizumab?

EscapedtoWales profile image
EscapedtoWales in reply to SheffieldJane

I haven't heard of Tocilizumab - I will Google. Thank you.

PMRpro profile image
PMRproAmbassador in reply to EscapedtoWales

Also known as Actemra - but in the UK its use is very limited, only for refractory GCA.

Ronnie101 profile image
Ronnie101

Just to add my empathies, I'm sharing the same experience - slow tapering down to 6.5 mg, then a flare, with accompanying pain all over but particularly in my right hip. Tried a quick increase to 10mg, but still not under control...and wondering whether to go higher!

EscapedtoWales profile image
EscapedtoWales in reply to Ronnie101

It's so demoralising isn't it Ronnie101? You feel any reduction is so hard fought for. I hope you find the right dose to ease your pain. Take care

Ronnie101 profile image
Ronnie101 in reply to EscapedtoWales

Thank you, you're so right. After more than 5 years, on good days I get into the frame of mind it's a marathon, not a sprint, and on bad days I just want to give up! I hope you can work it out.

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