I have made it to Club Zero: Exactly 30 months ago... - PMRGCAuk

PMRGCAuk

21,302 members40,389 posts

I have made it to Club Zero

allykat profile image
27 Replies

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

Written by
allykat profile image
allykat
To view profiles and participate in discussions please or .
Read more about...
27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

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

EdithWales profile image
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 profile image
Rugger

Well done!

Best wishes for your continued good health.

@~)~~~~

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

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

allykat profile image
allykat in reply to

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 profile image
PMRproAmbassador in reply toallykat

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 profile image
allykat in reply toPMRpro

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.

in reply toallykat

Thanks for info and well done. ☺️

PMRpro profile image
PMRproAmbassador

Well done!!!!

SheffieldJane profile image
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 profile image
Hollyseden

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

Klah profile image
Klah

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

Enjoy each new-found day🤗

Sandy1947 profile image
Sandy1947

Congrats! So happy for you. Enjoy every moment.

Sho-Sho profile image
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

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 profile image
allykat in reply to

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 profile image
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 profile image
allykat in reply toElaine-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 profile image
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 profile image
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 profile image
Hono

Congratulations! Looking forward to that day.

Patience47 profile image
Patience47

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

Edward

Gaycreasey profile image
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 profile image
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 profile image
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 profile image
PMRproAmbassador in reply tojulianne3

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

Not what you're looking for?

You may also like...

Club Zero - I think...

Hi all. It’s 18 months since I began Pred and 4 months since almost zero turned into a flare that...
Littlesky profile image

Club Zero - Malfunction

Hello all I'm hoping I've done this right today and created my own page as without Mark help...
optermist profile image

Club zero.....but

Happy to report that I have been steroid free for three weeks now, many thanks to all who have...
Mischevious profile image

Nearly in Club Zero

Well after some time I took what could be my penultimate dose of pred last night. I got to this...
JulianJ profile image

Club Zero membership has expired

Hi Folks It turns out my post of 12 days ago was rather premature. Today I have been diagnosed with...
allykat profile image

Moderation team

SophieMB profile image
SophieMBPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.