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I've just signed up so I might be butting in the middle of a discussion. I've got PMR and GCR am weaning off Prednisone and still on Methotrexate. I think I've experienced every side effect of these drugs, and withdrawal symptoms of Prednisone since this whole thing started April 2017. I think the thing that I have the most difficulty with is that "this" (previously unheard of diseases) happened to me and changed my life completely. I worked out with weights, pilates and yoga 3 days a week, and one day I woke up unable to move. What a shock and there were more to come as I imagine many of you have experienced. I look forward to reading your comments and learning from you and helping you too, if I can.

[Hidden]

Hi Waterwise, Welcome! I too have both GCA & PMR and was diagnosed in November 2017. I have also experienced EVERY every symptom of the diseases, side effect of the Pred, and withdrawal symptom of the Pred! It has been a ROLLER COASTER! I have been on as much as 80mg of Pred and now down to 30 mg. And yes, I too led an active life before GCA & PMR! I worked, I volunteered at our local hospice, and had a busy social life, but on November 13, 2017... all that ended. I have written a blog since my diagnoses and post them here quite often... Here is a link to the one I posted today... if you're so inclined: rantingsofamadwomanblog.com/ You are in the right place... there are some very intelligent, well informed, experienced people here with big hearts and who are always willing to listen! Welcome.

[SnazzyD]

Hello, I’m another one whose body decided practically over night it wasn’t going to play any more and attack itself. So, I know the now you see it, now you don’t life before. I’ve been at it since March 2017.

[SheffieldJane]

Hello Waterwise and welcome, you are never butting in here!

I can relate to the grief for your old life. Perhaps it was time for us to slow down and reflect? I have learned quite a bit about myself along the way. Looking forward to hearing more from you.

[Hidden in reply to SheffieldJane]

Yes, indeed, slow down and reflect. This has certainly changed my perspective on a lot of things. It was such a radical awakening to realize not to take things for granted. I'm also focusing on gratitude. There are so many negative thoughts and depressing moments that I force myself to look at things in another way. It might all be tedious but it isn't boring.

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome. Where have you been since last April? Just onto let you know - there is life after GCA.

P

ME: diagnosed GCA April 2012 (after 18 months undiagnosed) start dose 80mg Pred, in remission since Sept 2016.

[Hidden in reply to DorsetLady]

Thanks for the welcome. I am finding this site so helpful. Where have I been since April 2017 … well, I felt as if I was on another planet. I learned what I could about what I have and the meds and focused on getting over it all. Listening to audio books was a great way to keep my mind active, learn things, and be taken away from it all, while lying about in waves of aches and pains and all the other side effects. I figured if I couldn't sleep I'd just lay still and rest, but the audio books took my mind off it. Having written this I think I really was on another planet!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I think we all feel like that at times. Glad you’re with us now!

[PMRpro Ambassador]

And I will add it is perfectly possible to have a good life even with PMR, never mind after! PMR doesn't stop me doing the vast majority of what I want to, I just do it differently. I've had PMR for over 14 years and been on pred for 9 years - it lets me live well.

[PMRCanada]

We’ve connected via your other post, but I did want to extend a warm welcome once more.

I am 56 and was undiagnosed with PMR from Dec/17-Apr/18. Started pred May 1, good response, tapering to 13.75/12.5 currently. This condition has impacted all aspects of my life. Just weeks before the symptoms emerged, i was newly married, newly retired, and had just sold and bought a house that we renovated. Hobbling around in pain was not the retirement I had dreamed of and worked for. No tennis, golf, dancing, extended travel, intimacy. My relationships took a hit too. I am so grateful that I did not have to work, especially the first 5 months, and that my husband, family, friends and therapist stuck by me and continue to be supportive.

This forum of wise folks have also been invaluable. Being part of these conversations reduces my isolation. I’m so glad you found us and thrilled to welcome a fellow Canadian. 🇨🇦

[Hidden]

Hi Waterwise

Welcome ~ I’m a PMR’er!

I’m on 7.5mg at the moment except these past couple of days as l’ve been moving House.

I’ve also been on Methotrexate twice & l contribute to the Group regularly.

Very Best Wishes

Mrs Nails 💅🏼

And New Nana to Charlotte almost six weeks old, hence the House Move 🏠

[SheffieldJane]

The prettiest little girl ever!🎀

[Hidden in reply to SheffieldJane]

Thank You Jane, she’s coming to lunch tomorrow with her Mummy, will show her, her new room for when she’s old enough to come to stay! xx

[SheffieldJane in reply to Hidden]

I have a fully equipped playroom in my house and my 4 are in Australia. I expect that makes me a bit sad. I haven’t the heart to pack it all away. 😢

[Hidden in reply to SheffieldJane]

That’s optimism, they’ll come to visit & it’ll all be ready! I doubt Charlotte will get to stay over unless Mummy & Daddy do too, when our other Son & Wife visit but never say never!

Hope you’re doing OK - l was zonked out yesterday afternoon & didn’t get up until 6.30pm but l have learnt the hard way! xx

[SheffieldJane]

I am not surprised Angela. You are like me. Get everything just so and then collapse for days. As well as barking orders at husband and son. Not barking, that never works, wheedling more like.

[paah]

Hi Waterwise

I have the same as you , I started with Preds in Aug 2012 50 mg's per day and progressivly reduced the dose and in Nov the following year went on to Metho - it was a disaster, the treatment started breaking down my immune system, after two months went back to Preds and now down to 3 mg's per day - any thing less and I'm in trouble !