coping with relapse

[Bluebutterflygirl]

Hi..trying to reduce prednisolone and use methotrexate to control PMR/GCA these last few months but each time I go below 5 mgs my symptoms flare up. Now on 3 mgs but stiffness/pain are similar to when started treatment 2 yrs ago! Wondering when and if it’ll ever settle and I can get my life back! Any help would be appreciated. I’m trying to stay positive but it’s hard! Thanks

[Omakaat]

Hai,

Yes staying positive is hard! It seems to me that you probably already know what would be the sensible thing to do, treat it as a flare.

Disappointing, yeah, I know. I am four years into this rollercoaster ride, and yes, seeing the end of the track would be so good!

But, and you will find a lot of other remarks and observations with all the same message really: we have got no say in this. Sit it out, up the pred if you need to, take the best care of your body you can possibly manage. Be kind to yourself.

Do inform your nearest and dearest. We would all like to only tell them positive news, showing we can brave this out. Can’t complain, he.

But then, sometimes, we don’t have positive news, and just like the patient, the other members of our circle will simply have to deal with it. I know, lost a few along the way who could not cope, and it still hurts, but I can’t change the way they feel. Others offer extra help when I am on a down track, and it really helps to cope with the selfcare. Keeping up a brave face takes energy too.

Hang in there, you are certainly not alone, all the best,

Oma Kaat

[Bluebutterflygirl in reply to Omakaat]

Thank you so much for your compassionate supportive reply. You’re right it’s hard to stay ‘brave’ and it’s been a roller coaster ride I did not want to take. Going from healthy all my life to how I am now has really messed with my head. It’s taken me a very long time to start to accept and come to terms with the fact I have a condition which is life long and some of my friends and family have not been able to cope with me not being my usual strong resilient self ( wonder where she’s gone these days !!)but I’m constantly surprised and feel blessed at new friends and strangers who’ve offered me kindnesses along the way. I knew about the support organisation way back but did not seek help as part of my usual avoidance strategy ..’nothing happening, nothing to see here ‘ 🤔. I now realise that’s not helpful so thank you for reaching out to me. I hope to return the favour to you and others if needed. It’s good not to feel so alone. Sending you my good wishes 🦋

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

It will... but for many PMR lasts a lot longer than the paperwork you doctor may imply.

Would say 5mg is what you actually require at the moment, it won't always be, but trying to get below it time and time again and failing is sending you a message.

So maybe go back to 5mg, stay on it for a couple of months, and stop thinking about tapering for a while - and when you do then try a slower tapering plan [there is one mentioned in link I'm sending] - and reduce by 0.5mg a time [if not already]

As you haven't posted before maybe have a look at this link if you haven't seen it -

healthunlocked.com/pmrgcauk...

[Bluebutterflygirl in reply to DorsetLady]

Hi… thanks for your welcome and response. I’ll certainly take a look at the links you sent me🙏 I agree there is some kind of message about how I’m reacting as an individual to tapering of meds compared with the ‘average’ patient these last few months. I’ve asked for and been given a review apt with hospital for next week so will be able to discuss what I’ve experienced and with yours and others help speak with more confidence and knowledge. Thank you again🦋

[DorsetLady PMRGCAuk volunteer in reply to Bluebutterflygirl]

You will find many don't compare to the "average" displayed in guidelines etc - and we find that more normal to be honest. One size definitely doesn't fit all!

[Bluebutterflygirl in reply to DorsetLady]

Indeed!

[PMRpro Ambassador in reply to Bluebutterflygirl]

There is a decided lack of average, normal, typical or a lot of other words doctors try to apply to PMR!!! I'd say the most applicable term is probably "not UNusual" - there are commonalities but a lot of divergencies.

[Bluebutterflygirl in reply to PMRpro]

Mmm..I’d agree with that👍

[PMRpro Ambassador]

Hi and welcome!

It is of course perfectly possible that the MTX isn't doing a lot - there is no guarantee it will get you to a lower dose of pred never mind totally off it. MTX rarely replaces pred - and when it does, as with success with any other DMARD, the question must arise as to whether it was "just" PMR the patient had. There is no definitive diagnostic test and several other diseases can present looking exactly the same as PMR in what is called polymyalgic presentation. MTX isn't a replacement for pred for most PMR patients - and you continue to require enough pred to manage the inflammation or the PMR flares up.

As I just wrote to someone else - only a third of patients are able to dispense with pred after 2 years or less. That is a lot of us who need it longer. I am on the fanciest steroid sparer, Actemra, but I still require 7mg pred to keep bicep tendinitis at bay. After 3 or 4 weeks at 6mg I can't use my arms without a lot of pain, can't twist my forearms or lift even a small kettle. I live alone - really not an option. Since I need 5mg anyway for adrenal insufficiency it isn't hard work getting to take the other 2mg I need for total stability in the context of PMR - and I will take that. My first PMR symptoms appeared 20 years ago, I have been on pred for 15+ years. But it has meant a pretty much normal lifestyle for that time. The previous 5 years when I wasn't diagnosed were pretty painful.

[Bluebutterflygirl in reply to PMRpro]

Your comments are so helpful and there’s definite similarities with my experience dealing with health professionals caring for me. Well intended I guess but not reassuring or true! I feel better armed now for my review next week🙏💕

[PMRpro Ambassador in reply to Bluebutterflygirl]

Good! That is our aim here - empowerment!