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Club zero getting closer - My Actemra story continues

As I look back at 2017 I can’t help but to be thankful for the support of my family and friends. All of you in this forum have been such a support and I will be so ever grateful. You all have been there for both the ups and downs. I read some of my old posts (which made me tear up) and was just so amazed how kind, patient and supportive you all are. Some of my posts especially the early ones were so sad. I forgot how far I’ve come. God, I was so sick...As I look to 2018 I am starting to see the light. I’m currently flip flopping between 3mg and 4mg of Rayos (time released Prednisone) and my weekly Actemra shots. The day before my shot I used to feel horrible now that has passed. I see my doctor in 3 weeks in which I should be flipping between 2mg & 3mg. If all goes well I should be off everything by April or May. This is the best I’ve ever felt in such a long time. It is rare when I get that flu feeling now. My only reminder PMR if the occasional soreness in my arms & shoulders. I joined a gym and hired a yoga teacher to work with me initially one to one. She is doing Yin yoga with restorative moves. She is also doing personal training but in the pool. She is my age and a cancer survivor (Non-Hodgkin Lymphoma) and believes water therapy and yoga played a huge part of her healing process. It feels good to get back to myself finally.

God bless you all! Happy New year!!!

Marie xo

9 Replies

Good - and the story continues. xxx

1 like

What a wonderful positive post looking forward to the New Year! We'll be with you all the way Marie!


Thank you!


Marie I am so happy for you! Have a very Happy and Healthy New Year!



You too Sandy!


Hi Marie :-)

Thanks for your inspiring Post about your personal PMR Journey and recent, positive progress. It's always encouraging to hear good news from some of 'Us Lot' alongside the battles that many of us face in coping with, and surviving (or hopefully beating) these various types of chronic Auto Immune illnesses.

Yes, it seems miraculous to feel better after a long battle with the pain, stiffness and (especially) DF (Deathly Fatigue) that come with PMR and GCA. And.. to feel that there is light at the end of the tunnel - Yay! :-/

I agree, this forum is a great source of support, trusted expertise, information-sharing and encouragement through the 'Tough Bits': and, of course, some Fun along the way.

Keep up the great work, and keep us all posted!

Best wishes for a Happy New Year to you and all Followers here too.

'Uncle' MB ;-)


Happy New Year to you to MB. How are you feeling these days? Tapering going well?

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Greetings Marie, thanks for your kind wishes :-).

I'm not too bad, all considered. Now (at last!) down to 2mgpd Preds and with much less of the DF (Deathly Fatigue) than often experienced on my PMR journey previously. Some pain and stiffness still, as I expected in the recent cold and wet UK Winter weather, but 'sticking' at 2 mgpd and being patient.

I agree with you: when we look back, we can hopefully appreciate how far we have progressed since first being struck with PMR and GCA - even if not yet back to 100% health-wise (but what does '100%' mean anyway!). And, yes, looking forward to joining Club Zero is an exciting prospect, even if it takes a little more time.

Best wishes, and looking forward to comparing notes as we move forwards into the New Year.

MB :-)


That's so inspiring and encouraging. So pleased everything going well. Onwards and upwards for you and all of us we hope.


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