I have made it to Club Zero

[allykat]

Exactly 30 months ago today, I was diagnosed with GCA and started taking steroids. Yesterday I took what I hope was my last steroid. I have learned a great deal from this forum and have no plans to leave. I would miss markbenjamin57 's epistles too much!

Love to you all

Kathryn

[DorsetLady PMRGCAuk volunteer]

Hi,

Congratulations -no please don't leave us - I'm sure your experiences will help those coming along behind you!

[EdithWales]

Well done Kathryn

I was diagnosed with GCA in April 2014 and am now tapering to 4mgms of Prednisone. I got to 3mgms after 23 months then flared and it was so depressing.

It's a long frustrating road and you have done so well. Don't leave us and good luck.

[Rugger]

Well done!

Best wishes for your continued good health.

@~)~~~~

[Hidden]

Great to read that Kathryn. It gives us hope just starting out on this journey. Thanks.

[Hidden]

Congratulations Kathryn, can I ask what dose was the last steroid ?

[allykat in reply to Hidden]

Thanks Pete. Once I got down to 5mg, I reduced by 1/2 each time (5/4, 4, 4/3, 3 and so on). The reductions have worked very well for me with just two flares early on. I have only had GCA and perhaps that makes a difference.

[PMRpro Ambassador in reply to allykat]

Yes, I have a suspicion that with "just" GCA it is far easier to get rid of pred with than with PMR. Somewhere there is a comment from the Mayo cinic about "cure" of GCA. No such comment about PMR.

[allykat in reply to PMRpro]

I too have thought that. I seem to have come through it all pretty much unscathed to the point that when I have read the woes of so many trying to reduce, I have felt a bit of a fraud. I do think that age, fitness and diet can have an impact on recovery.

[Hidden in reply to allykat]

Thanks for info and well done. ☺️

[PMRpro Ambassador]

Well done!!!!

[SheffieldJane]

Well done allykat. I thought you had been quiet of late but it turns out that you were beavering away getting well. Congratulations. Have a gentle year though!

[Hollyseden]

Well done. Lovely to read a success story. Keep well!!

[Klah]

Wonderful!!! Nice to hear your success story....and see a light at the end of the tunnel!!🌠

Enjoy each new-found day🤗

[Sandy1947]

Congrats! So happy for you. Enjoy every moment.

[Sho-Sho]

Well done you, must be a wonderful feeling. I am 14 months in now with GCA and slowly, slowly inching down from the pred, at 11 and a half, so many months to go yet, but you look great.

Sho Sho

[Hidden]

I am so happy for you!!!

At 22 months in and 3/3.5 mg you give me hope. Hopefully I will be saying the same words next year sometime.

[allykat in reply to Hidden]

Just remember the words pole pole which is Swahili for slowly slowly. My doctor shared these words with me early on in my treatment and I have never forgotten them.

[Elaine-W]

Hi ally Kat,

What a boost you post is. When I become despondent about the time this dreadful illness takes to recede, I will remember your photo. I don't know it if was intended to be motivational. The zippy car, the smiling face. A background of blue sky and the bridge to freedom and good health. Thank you so much and I wish you good health and happiness. You go girl! 🌹

[allykat in reply to Elaine-W]

Hi Elaine and thanks for your good wishes. I must admit I have always fancied a mini and there is no time like the present!

Cheers

Kathryn

[Grants148]

well done Allykat,it is good to know that GCA can be beaten, it takes time and patience but it is well worth taking all those preds,where an earth would we be without them .

[Jackoh]

What a lovely photo! Many congratulations and yes don't leave us!! It is such a boost to hear of success stories. All the best x

[Hono]

Congratulations! Looking forward to that day.

[Patience47]

Kathryn, so very happy for you, and glad you are staying with us.

Edward

[Gaycreasey]

How lovely to hear that someone has reached the end of this seemingly endless journey. Good luck for the future. And, yes, please don’t leave. We need your experience and the reminder that there is an end in sight!

[Willowherb35]

Congrats, Allykat! Your success is an encouragement for me too. I'm 16 months on from GCA diagnosis in June 2016 and am down to 5.5 mg pred. Dropping 0.5mg a month gets me to 5mg tomorrow! Getting there...

[julianne3]

This post gives me an image of us all being inmates who are serving time and we are saying goodbye to one being released on parole. I am 13 months into my sentence so I still have a long way to go. Don't misunderstand, I am chuckling away to myself as I write this but just a picture that came to mind while reading through. I am absolutely thrilled for you Kathryn and pray that your future is blessed.

[PMRpro Ambassador in reply to julianne3]

It wouldn't be so bad if you got time off for good behaviour!!!!!