PMR flare

[Graciejack4]

After successfully completing 3 years of Prednisolone for the treatment of PMR and GCA I find myself experiencing a PMR flare, I’m currently on 7.5mg Methotrexate inj weekly and recent bloods are normal. My Rheumatology team refuse to accept its PMR despite symptoms I find myself trying to self medicate on Prednisolone to relieve the pain, I’ve taken 10mg so far for the last 3 days. It has resolved my symptoms but not sure where to go from here 🤷‍♀️has anyone had a similar experience?

[DorsetLady PMRGCAuk volunteer]

More than would like for sure.

Maybe stay at 10mg for a few more days - then you should be able to drop down, perhaps to 5mg initially for a couple of weeks.

After that you may find that a smaller dose is enough... 2.5mg or lower.

You'll just have to give a go and see.. and will you have enough Pred to keep you going at a lower dose for as long as you need?

[Graciejack4 in reply to DorsetLady]

Yes I’ve got enough to be going with, thank you for the advice, I’m hoping to see my Rheumatologist soon so will take it up with him.

[powerwalk in reply to DorsetLady]

DL can i ask if the flare protocol here is an "official" protocol or a HU one? Just asking as ive been so bad with recent events i decided to implement it but i have a rheumy appt next week and just wondering if she'll know what im talking about or if i need to be more careful how i tell her!! I couldnt wait to see her as things got so bad, couldnt even make my lunch on Sunday, hands were so bad. Thank you.

[PMRpro Ambassador in reply to powerwalk]

There are rheumies and GPs who use similar approaches to deal with an over-shoot flare. But it is just what we call an approach that has worked well for a lot of people as a sort of shorthand - we write it SOO often. Always err on the careful side about such things - there are doctors who are so precious about patients acting on their own that they will object to what even another doctor suggested!

It's a shame you couldn't wait really as she may not even believe you.

[powerwalk in reply to PMRpro]

Oh i know, i tried so hard but it just got so bad, i could just about walk a bit with the pain and ended up taking Tramadol which i avoid as i hate the after effects, but i was getting a bit scared to be honest i ended up back in bed for the day. This is the result of my infusion, so it did some bad stuff for me. Shes's a new rheumy too!! I will show her the pic i took of my eye too from it. Ive no idea what shes like, all i know is the dramatic difference increasing has made to my pain!!!

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

It my take on amalgam of info gained over years…

usual advice from guidelines is to return to previous dose - for first and second flare, and then to add in something like MTX for subsequent ones.

But as PMRpro says - maybe ask Rheumy for advice would be safer option…

[powerwalk in reply to DorsetLady]

Tks. New rheumy, wasnt lookin forward to it and less so now!! Im going to continue the higher dose for this week as it has made a dramatic difference. I will navigate my words when telling her! Thank you.

[PMRpro Ambassador]

How long is it since you stopped the pred? You don't "complete a course" of pred for PMR/GCA, how long you need pred for is an open-ended thing. And while 1mg pred a day can be loads to hold the symptoms of either at bay, zero is often a step too far and a tiny drip drip drip of left-over inflammation due to a low activity underlying autoimmune disorder eventually builds up enough to cause symptoms. Contrary to many doctors' beliefs, MTX does NOT replace pred entirely, if it did, they would use it more.

Where to go from here? A better medical team that actually understands how PMR works would be my choice - but I do realise that that is not likely to happen. Your PMR has not gone away, whatever they think. The inflammation has built up to a level you can feel but not far enough to alter the markers - a very common event.

[Graciejack4 in reply to PMRpro]

Yes I agree, the focus initially was the GCA I was on Tocilizumab too up until April this year when it induced liver failure 😞 so it was stopped and they just left me on Methotrexate! I finished Pred in January this year after a 2 and a half year taper. I haven’t had any PMR symptoms back until now but I understand it is always lurking in the background! My Rheumatology team are not very understanding of my symptoms as my bloods are still within normal range! An issue which is quite common it seems.

[PMRpro Ambassador in reply to Graciejack4]

Out of interest - how did TCZ get the blame for the liver problems rather than MTX? I do fail to understand why some use them both together - when it is known that increases the adverse effects.

Nine months is a long time after stopping pred - but not impossible that the PMR had never gone away, but it does sometimes relapse, even after years.

[tangocharlie]

What do you mean by 'successful treatment"? I've been in that situation of rheumatologists refusing to believe I still had PMR after 4 years. All I can say is trust your intuition, stand your ground, be assertive and give them the facts. You still have the symptoms and manifestations of PMR. Whatever you have is responsive to steroids. There is no fixed time to have PMR, the 2 year myth is a myth. I eventually got a PET-CT scan which confirmed I still had PMR but it took over a year of fighting the people who reckoned they knew better. At one point I said something like it looks like a duck and quacks like a duck so if you don't think it's a duck what is it then? You can say you have been in touch with the charity PMRGCAuk to get information how treatment of PMR

[Graciejack4 in reply to tangocharlie]

It is so frustrating when you know your own symptoms but they refuse to accept it!

[tangocharlie in reply to Graciejack4]

More than frustrating, my experience battling the medics made me so angry it drives me to do all I can to help others who don't get the help they need and deserve from doctors who don't know what they're doing but think they do - the unconsciously incompetent. What saddens me is this still happens all too often. Do you have anyone to go to appointments with for moral support? The advice I got from a doctor who is a friend was to take a man along with you, they listen to them more

[Graciejack4 in reply to tangocharlie]

Yes I take my husband with me 😂I have an appointment in two weeks and have started a list of questions for him 😂

[Graciejack4 in reply to tangocharlie]

I’m going to try and get a PET scan done too 😊

[tangocharlie in reply to Graciejack4]

It's the only way. Say you have heard that PMR can morph into Large Vessel vasculitis and GCA and that it wou;d be good to be reassured. I always try and phrase it as a question eg would it be a good idea to have a PET scan to find out what's going on and if the inflamation is still there or has changed?

[Graciejack4 in reply to tangocharlie]

Yes I’m definitely asking for one this time around, I’ve had a difficult journey with GCA sight loss and PMR so don’t want to leave anything to chance.