PMR pain and stiffness showing its face again.

[Markandevie]

One month ago I wrote to you describing my prednisone tapering and was on 1mg and going great 18 months in on the PMR `journey`. Under advice, I increased it to 2 mg as I was getting stiffness in my hands but now I have stiffness bilateral in my groin, shoulders, hands and neck. Another symptom I had all them months ago was creaking joints or joints that pop especially in the morning and now that is back as well. I know I have to increase steroids but I hate the side effects such as being a nervous, emotional wreck and whatever else it decides to dish out.

I am a positive person, always have been but this is testing me to my limits.

Not sure what I am asking but I need to vent.

Thank you

[DorsetLady PMRGCAuk volunteer]

well you need to treat as a flare - as explained in attaches - and once PMR back under control drop back to 2mg or 2.5mg. Suggest you stay there for a few months - at only 18 months in, your PMR still has a lot of life left in it yet

healthunlocked.com/pmrgcauk...

You can vent wherever you need to on here - 😊

[piglette]

Have you tried taking pain killers to see if it may be something else?

[Markandevie in reply to piglette]

I have done but sadly does nothing. I recognise the feelings of PMR albeit not as bad as when first diagnosed. Tomorrow morning I am going to take 5mg and see if symptoms lessen. Would I notice a difference in one day of taking 5mg? Or would I need to stay on for a few days before tapering again?

[DorsetLady PMRGCAuk volunteer in reply to Markandevie]

Doubt you’ll get that much reaction after just one day…

As I suggested try the flare protocol -so at least 7 days at higher dose - to clear inflammation out. If you just just faff about for a day or two it rarely works -you have to hit it hard!

[Markandevie in reply to DorsetLady]

thank you and will come back in a week to let you know how i feel

[DorsetLady PMRGCAuk volunteer in reply to Markandevie]

Please do..

[stevebran]

Sorry to hear of your PMR flare, it can happen at any time but is more likely once you drop below 7mg when your adrenals are supposed to kick in to control inflammation. There are plenty on here who have similar experiences. Of course you have to listen to your doctors (or rheumatologists if you’re lucky) but I have found much more knowledge and better advice on this brilliant supportive site. I hope using one of the protocols here for dealing with flares gets you pain free and back on track to tickle your adrenals out of their slumber soon. Best wishes

[Markandevie in reply to stevebran]

appreciate your kind words and yes taken the advice and will report back in a week and hopefully get back on track. Thank you again

[Chiavenna]

I am starting taper from 8mg t0 7mg today and holding my breath. I haven’t been feeling great the past few weeks but am seeing how long I can continue taper. Occasionally I take a couple Tylenol and it seems to help. Keep us posted, good luck

[Markandevie in reply to Chiavenna]

Yesterday was amazing, The first time in nearly 2 years I felt normal. No pain, no stiffness so I went crazy. I had the energy of a racehorse, done the garden, cleaned all of my widows, mowed the lawn..... and today..... all back to aching but it was worth it to feel that good again. Going to stay of 5mg until aching and stiffness go and then drop to 2.5gm. Good luck with the taper,

[Pinkcrocs in reply to Markandevie]

It's good to feel well again.Hope you bounce back.

Your muscles had an extra workout yesterday 🙂

[Markandevie in reply to Pinkcrocs]

certainly did and no regrets at all

[Chiavenna in reply to Markandevie]

Excellent! Thanks, it gives us all hope 😊

[PMRpro Ambassador]

All been there - know what you mean.

However, you need to grit your teeth and deal with this flare - or it will just continue to get worse and you will need even more pred to sort it outl Creeping up will get you nowhere - you need enough pred to manage the inflammation and you can't cheat PMR, it will always win.

The flare protocol is as it is for a reason - you need enough pred to springclean - at least a week, possibly more. Up to 2 weeks you will be able to drop back to a lower dose without a taper, it might be uncomfortable but you haven't been on enough pred to greatly affect any recovered adrenal function.

You can fight all you like and devote all that every to a war you cannot win - but coming to an agreement with pred is the only way to get out the other side and a lower dose as the PMR fades. In the long run it is far easier, it isn't giving in.

[Markandevie in reply to PMRpro]

Thank you will take your advice on board....did feel good though even if it was temporary. I am back on course and plan to stay for a week or so before dropping again . Thank you

[Hopeful424]

So sorry you are experiencing this flair. My rheumatologist suggest very low dose Cymbalta to help with residual pain. It appeared to help some. Might be worth asking your doctor if that is a viable option for you. May even help with the anxiety. Let us know if that is suggested for you.