Fed up with the PMR pain!

Hello, I've had PMR for about 2.5 years. And apart from the beginning, when the Doctor put me on 15mg of Prednisolone, I've had (varying degrees of) pain every day. I keep going up and down the steroid dosage scale and am currently on 2mg....but not managing very well. I would love to get off these *** things but can't get the adrenals to spark into life again! Has anyone else had this problem? And if so, any tips? Many thanks. M

[PMRpro Ambassador]

Never mind your adrenals - that is a secondary problem. If you have PMR pain, you most probably still have PMR and you aren't on high enough dose to manage it. Yo-yoing the pred dose makes it increasingly harder to reduce again and you make things worse for yourself.

By far and away the best way to go about things is to accept you have PMR, that the only medication that works is pred (in the UK at least) and that you need enough to get adequate pain relief. Then you taper the dose VERY slowly, avoiding flares due to over-reducing and over-doing things. And eventually you will get to zero pred - no guarantees when though.

When you try to go at things with a sledgehammer, it never works.

[Hidden in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer]

Sounds as if, apart from initial dose, you have never really had your PMR under control - whether that because you have tapered too quickly or tried to carry on a normal life irrespective of your underlying illness or what, you may never know…

But you do need to get back to a dose that gives you the same relief as the initial 15mg did - unfortunately because of your constant yo-yoing it may be difficult knowing what that dose is….and then taper much more slowly…

.. and you will get off the Pred, but only when your PMR goes into remission. Not before.

Even though you aren’t a new patient, a look at this might help you to understand and manage your illness more successfully-

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thank you

[SID3]

I am on a similar time scale to you and also ‘stuck’, at around 3.5 as every time I go to 3 things become more difficult. I have never been fully pain free and undoubtedly do overdo things by trying to live my ‘normal’ life. I would be happy to stay at 3.5-4 are it not for having been pushed into diabetes 2 by pred - and being if anything underweight reducing food intake to fix that is not a real option.

[Hidden in reply to SID3]

I sympathise, I wish they told you at the start that it was difficult getting off steroids. But then self fulfilling prophecy would probably kick in! I know some people find intermittent fasting good but it didn't work for me. Trying to cut out sugar though.

[PMRpro Ambassador in reply to Hidden]

It isn't always - some people taper their pred dose slowly and if the PMR is in remission, they get off pred without any great difficulty. You have to differentiate when it comes to the reasons. The main reason for struggling to get off pred is that the underlying cause of the PMR. an autoimmune disorder, is still active and creating inflammation. If you stop pred or even just taper too low to manage that, the symptoms will come back. You need enough pred for as long as the disease is active. There is little you can do to influence the autoimmune part of PMR. And it is a myth that PMR only ever lasts 2 years.

[Viv54 in reply to Hidden]

I agree with you, I had no idea what problems.They could cause .I got instance relief from the pain thought they were a wonder drug.My Dr just left me to get on with it , by the time I really looked in side affects it was to late now I'm trying to taper but get stuck on 7.5 every time ! My weight gain was awful ! Plus loads of other problem.We just have to take it one day at a time.Chin up !😊

[Hidden in reply to Viv54]

Agreed!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I wish they told you at the start that it was difficult getting off steroids.

Not necessarily-if they let you reduce sensibly and dont force you to reduce too quickly and therefore create a flare. Once that happens you can end up in a yo-yoing situation which just increases the time you’re on them.

You need to take the correct level of steroids for your disease activity-that’s what they need to learn….and that PMR and GCA lasts as long as it lasts.

Took me 4 and a bit years to get from 80mg to zero - no rushing, no flares.

End result -GCA in remission because it had been allowed to run its course .

[SID3]

Gave up sugar in drinks 50 years ago - but finding it difficult to renounce fruit and two digestive biscuits with morning coffee. La dolce vita, no?!

[Hidden in reply to SID3]

We have few pleasures in life!!

[Zareda]

I was on 1mg for almost a year before I could finally taper off. I have been off prednisone for almost 4 months. Am I pain free……not even close. I felt so much better on 1mg but I’m trying not to go backwards. I doubt I will remain steroid free because my inflammatory markers are on the move again. It just comes down to when Ive reached my pain tolerance limit. Everyone is different so I wish you much success in your attempts to taper off steroids.

[PMRpro Ambassador in reply to Zareda]

Just bear in mind that, if the inflammatory markers are rising it is telling you the disease process is active. If you restart the pred sooner rather than later you are likely to get away with a lower dose of pred to get things under control. Leave it and you may have to go right back to the beginning, high dose and the long tapering process.

[MamaBeagle in reply to Zareda]

I was 12 months on zero pred. The pain started again this April. It took me a few weeks and until I couldn't raise arms over head that it really admit it was a return of the PMR. What Pro says is true. In early June I was able to start on 12.5 mg as opposed to the 30 mg, hefty dose I know, the first time round. Initial response to pred was immediate, pain free in 2 hours following first dose. My GP happy to leave me in control of tapering. So no pressure. Call me if you need me were her parting words after last telephone consult. So if you can get on top of things now with a much lower dose than I've had to start on and then taper in tiny steps and very slowly it may ease your journey.

[Zareda in reply to MamaBeagle]

Thanks for your input. I took everyone’s advice and went back on 2.5 mg. Very good results within two hours. Will move forward with that dose until symptoms are u see control again.

[Zareda]

I’ve been thinking about going back on 1 or 2mg to see what kind of benefit it provides. If I went back on one or two mg as a trial for a week to 10 days, would I still have to taper off or could I just stop?

[Zareda in reply to Zareda]

Last sed rate was 56, CRP was 20

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

That’s high enough to take action .. assuming they are raised by PMR… and if you have symptoms as well…. a small dose may do it, but at those readings I’d be inclination try a bit higher than 1 or 2mg…. You can try a dose for 2 weeks or so without being concerned about stopping them… any longer - and you’ll need to taper off more slowly..

[Zareda in reply to DorsetLady]

Thank you so much. I really appreciate the insight that you & PMRpro provide. You have both gotten me through most of this journey because my rheumy isn’t worth much. He still keeps telling me that PMR only lasts 2 years so he’s trying to come up with another diagnosis. It’s obvious to me that it is still 100% PMR.

[PMRpro Ambassador in reply to Zareda]

If it were me, I would TRY 2mg but be ready to go to 5mg for a week and back to 2mg.

And yes - another rheumy or suggest he contact Prof Sarah Mackie in Leeds and ask HER about the 2 year myth!! How is your GP about how long PMR lasts? He may be all you need.

[Zareda in reply to PMRpro]

I gave in and took 2.5mg…..about two hours later I felt 75% better. That answered any doubts about whether I needed to be back on prednisone. I will stay on that dose for a week, then try to get back to my maintenance dose of 1mg. My rheumy is stingy with the prednisone so it’s always a confrontation. My GP washes her hands of anything that she refers to the specialist. She lets him manage anything autoimmune related. I know it’s a bad set up but health care is not what it used to be in the US.

[PMRpro Ambassador in reply to Zareda]

Nowhere if the truth were told - worldwide shortages of HCPs of all sorts, Mercifully, where I live we are about 20 years behind on most things

[PMRpro Ambassador in reply to Zareda]

Oh - and brilliant!!!!

[Thirkelly]

I'm at the 2 + year mark since diagnosis, like you and on a slow taper currently between 3.5 & 4 having been 'stuck' once or twice on the journey. Have also suffered from my own impatience - looking at the taper plan and thinking 'oh i can skip that bit'. Reaching the 2 year milestone has been rather lowering for me but i try to think it was just something the GP has to say. On a good day i do think getting below 5 is something of an achievement. (Don't always feel like it though!)

[DorsetLady PMRGCAuk volunteer in reply to Thirkelly]

Have also suffered from my own impatience - looking at the taper plan and thinking 'oh i can skip that bit'.

No you can’t - it’s there for a very good reason ! 😳

[PMRCanada]

I wish they told you at the start that it was difficult getting off steroids.

Had my GP advised me of potentially having difficulties getting off steroids I probably would not have started taking pred (or at the very least delayed starting it). As it was I was so petrified of pred and the possible side effects it took both my husband and GP some time to convince me to even try a 7-day trial pack of pred!

I am thankful to be reducing slowly and encouraged by my rheumy who tells me the slower I reduce the better (and less chance of adrenal insufficiency problems and flares of the disease).