ZERO. with a million thanks: after 7.5 years i... - PMRGCAuk

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ZERO. with a million thanks

pollyg263 profile image
53 Replies

after 7.5 years i have at last arrived at zero, my first mention is to all the people who have given me help and advise..i cannot thank you enough, yor help and knowledge has been an inspiration. any new sufferers withthis horrible painfull illness dont give up on this forum, i have asked many questions and read other suffers problems we have all helped each other,

i had 2 or 3 flares along the way, and at these times i have thought i am never going to get better, but i am all ok now but still taking care of what i do. also when i got down to 2mg on the program slow nearly stop instead of doing 1 week at old and new . i did 2 weeks then i dropped again did that for 2 weeks and so on.

so good luck to all i will still be on this forum keeping up with all the stories

all yje best pauline xxxx

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pollyg263 profile image
pollyg263
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53 Replies

Hope all goes well!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

🌷

Meggsy profile image
Meggsy

How wonderful for you Polly. 👏👏🌻🌻

pollyg263 profile image
pollyg263 in reply to Meggsy

yes meggsy you can do it xx

powerwalk profile image
powerwalk

Oh zero. Best of luck. Hope you keep good. Please let us know how you are doing.

PMRpro profile image
PMRproAmbassador

Great!!! But don't go away entirely - we need people like you to point to and say "It can be done, even it it is rather more than 2 years!"

pollyg263 profile image
pollyg263 in reply to PMRpro

no i will still keep looking and try to nudge folk along thanks xx

Rose54 profile image
Rose54

Good luck

Shows thier hope for all of us

pollyg263 profile image
pollyg263 in reply to Rose54

yes rose dont try to rush it xx

Rose54 profile image
Rose54 in reply to pollyg263

No rush its been 4 years and only got back to 11 lowest I have ever been is 7

I will get thier one day.

pollyg263 profile image
pollyg263 in reply to Rose54

you sure will xx

Longtimer profile image
Longtimer

Heartening to hear, struggling at the moment after 8 years...

Keep well....

pollyg263 profile image
pollyg263

just keep at it , and you will get there. i thought i never would.x

cataline profile image
cataline in reply to pollyg263

Fantastic! Thank you for sharing, gives us all hope for the future. Hope you continue in good health. xxx

peace_lover profile image
peace_lover

Brilliant! I hope you continue to be in good health in the future.

bunnymom profile image
bunnymom

Wonderful. You made it to the other side!

SheffieldJane profile image
SheffieldJane

Thanks for the wishes! Don’t overdo things until you are well clear of the woods! 🌳🌲

pollyg263 profile image
pollyg263

i will try to be very very carefull thanks dont want an action replay xx

Greensleeves profile image
Greensleeves

So happy to read this . It’s been over 7 years for me now and I’m currently having a horrible stress related flair .

It’s wonderful to know there can be a light at the end of the tunnel. Best wishes and big hugs to you xx

enan-illuc profile image
enan-illuc

Well done Pollyg263!

Whitner profile image
Whitner

Wonderful news! Best to you!

LemonZest11 profile image
LemonZest11

You give us hope ... all the very best to you. Thanks for sharing your good news. Xx

Melodyvine profile image
Melodyvine

Well done! It can be done but very, very slowly is the answer, I was halving and quartering tablets towards the end. I’ve been free for almost 8 years, in spite of dealing with my mother’s death, clearing/selling her house and my having a breast cancer operation and treatment a total knee replacement and having developed suspected epilepsy/cavernoma with no driving for a year, in that time. None of those traumas have caused a flare up🙏🏼

Mimma profile image
Mimma

Well done. Wonderful to hear.

Poppy1647 profile image
Poppy1647

Thats amazing. Goodluck

Margaret1951 profile image
Margaret1951

Well done !!!! Hope for me still !! Mine is 7 years March up and down and now on 5mg tomorrow yet again !

Denis61 profile image
Denis61

I’m so happy for you. Congratulations!

optermist profile image
optermist

Congratulations polly263 welcome to club zero, if you’re anything like I was I didn’t even go on holidays without taking some “spare” pred with me but never needed. It was 3yrs 3months before I could join the zero club. I am coming up for 2 years now in March pred free so sending lots of good luck for your new journey in club zero. Mine was GCA only, thankfully not PMR as well.

jannie21 profile image
jannie21

Well done Polly and welcome to the club. It is nearly 5 years since I went into remission, take it carefully and good luck, Jannie.

Thelmarina profile image
Thelmarina

How lovely! Good luck from now on - thanks so much for sharing your excellent news, and well done for all that persevering. 🌺

Celticrival profile image
Celticrival

I think it will be really interesting to hear how you get on for the next few months, I stopped pred in July and had a few rough months as my body adjusted, it helped that I had read here that someone had stopped and it had taken a year for her body to get back to 'normal'. In hindsight I would have stayed on a very low dose for a couple of months more but I felt that when I got down to 1mg it was such a low dose it couldn't be making that much difference so carried on down although was a bit achy. I think its really important that those who come off the pred keep in touh on this forum as theres seems little about the first year off pred and hopefully free of pmr

S4ndy profile image
S4ndy

Well done! xxx

Jackoh profile image
Jackoh

Hope all goes well for you Pauline- yes keep in touch x

Happy for you.😀. We do need to hear these endings. 🤗

Luciejc profile image
Luciejc

💖💖

remission profile image
remission

congrats, so happy for you, hope we can all join the zero club soon

Rugger profile image
Rugger

Great news, Pauline. We'll mention it at the Yorkshire support group meeting next month!

All the best.

selkie2019 profile image
selkie2019

Congratulations!!!

SlackerPMRmom profile image
SlackerPMRmom

Super congrats and well done. Thanks for the inspiration. I’ve only been at it 9 mos and had several flare ups over the holidays. I see the light at the end of the tunnel, tho!

Stay awesome!

Alfryd profile image
Alfryd

Hello to all! I am with PMR for 3 years. After a few flares and having been on methotrexate at one time and Actemra fusions for another - I am now feeling much better and am down from 8 mg to 1 mg pred. I feel like I could quit very soon as all PMR symptoms are gone. I do want to tell you of a medication that my New Rheumie put me on a few months ago. I do credit this med for allowing me to taper off steroids as before this I could not get below 8mg pred. It is called hydroxychloroquinine and it is first and foremost purpose is to prevent and treat malaria. But I have read that it is also used as a steroid sparing agent. Now I’m not sure if my PMR has run its course or this drug was responsible but the horrendous symptoms have abated and I feel human again. Has anyone else had experience with this drug?

Green_girl profile image
Green_girl

Welcome to the club! it's a fantastic feeling, and one you will smile at ever after. Keep up the good work and don't overdo things - it can take much time before you are fully 'over' it all.

blueisgreen profile image
blueisgreen

How fabulous! Congratulations. You give us all hope.

blueisgreen profile image
blueisgreen in reply to blueisgreen

Wait. Isn't this the drug Trump has stockpiled to (mistakenly) treat Covid?

Lanza23 profile image
Lanza23

That is brilliant news. So lovely to hear that you are now at ZERO. Like you I think Im never going to be free of this painful disease, but you have given me courage and I am trying to think positive I can do this as well. I am currently at 7mg. Keep well Polly and good luck.

Musiclady18 profile image
Musiclady18

You give us all that sense of hope in our journey thanks pollyg263! Good luck in your journey and congrats but please don't go away from the site!

Dukeyears profile image
Dukeyears

Well done and along with that you have brought forward words from others who have quit successfully, thats what we all need to hear more often, wishing you a long and happy recovered life.

Hollyseden profile image
Hollyseden in reply to Dukeyears

Yes isn't it encouraging to see comments from other who have also reached zero

LL0014 profile image
LL0014

After 8 years and several flare ups I am down to 3mg. Seeing your post has been a tonic as I can see the end is in sight for me.

rosalinda profile image
rosalinda

It took me 7 years and I have been really well for many years now. The last 1mg was the hardest with awful anxiety and tiredness but like you I got there in the end with the greatest help and advice from this forum. You can recover completely!!

Dukeyears profile image
Dukeyears in reply to rosalinda

Thank you, thank you, for that last sentence, happy life to you

GCA1947 profile image
GCA1947

Well done, perhaps there is hope for me after all as my prednisolone is going up again, it didn't seem like a flare no repeat of the usual symptoms, but I've had a long-term cough and am now developing a cold. My anniversary of starting was in December 2019 so I'm six years and counting. So much else is currently going on with me so I should make allowances. But I am so pleased to hear your news.

Best wishes

Colin

Islandgirl50 profile image
Islandgirl50

That is so wonderful , congratulations !!!! I was diagnosed almost 4 years ago with PMR/GCA . I am down to 2 mg and slowly doing the 1.5 mg . It's so exciting and I just want to throw all the drugs out, but I do know that would be disastrous, so I am plodding along . Hopefully sometime this year I can join you on the "zero club" I hope all goes well with you 🙏🏼🌹🌹💕💕🇦🇺🙏🏼

Dukeyears profile image
Dukeyears in reply to Islandgirl50

Im sure all of us out here are willing you to get there, patience, patience, remember slowly, slowly catchee monkee.

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