Good news: I wanted to share my news especially... - PMRGCAuk

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Good news

Liby57 profile image
86 Replies

I wanted to share my news especially with those who are just starting on their PMR journey or are in the middle of it to let them know that you can get to zero Pred and feel well again

I stopped taking Prednisolone 11 months ago and today had my last appointment with my rheumatologist. He has now discharged me. My blood tests all returned normal and I feel good and back to pre PMR onset. I am swimming, walking, able to play with my grandchildren, feeling strong and pain free. I’m very aware that PMR could reoccur but for now I’m really happy where I am.

I want to thank everyone on this amazing forum who supported me through my PMR journey. Being able to talk to others who understood my experience, my symptoms, all my fears and anxieties and were able to provide information and guidance really helped me get through it. Thank you.

Sending hugs and best wishes to you all 🤗😘

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Liby57 profile image
Liby57
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86 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good to hear -and good luck with your “new” life….

Liby57 profile image
Liby57 in reply toDorsetLady

Thank you. x

Rose54 profile image
Rose54

Thank you for posting

Hope for us all

Good luck

Liby57 profile image
Liby57 in reply toRose54

Thank you, good luck and best wishes to you too x

Africschoice profile image
Africschoice

well done that girl, just go and enjoy

Liby57 profile image
Liby57 in reply toAfricschoice

Thank you, good luck and best wishes to you x

Longtimer profile image
Longtimer

Well done you give us all hope…👍

Kendrew profile image
Kendrew

What wonderful news. So pleased for you. You're the proof that it's possible to experience full remission and regain some of the life we had pre diagnosis.

Congratulations and stay well.

Liby57 profile image
Liby57 in reply toKendrew

Thank you. Good luck and best wishes to you x

Wallysma profile image
Wallysma

this is wonderful. Have a great time with the grandkids, family and friends. Take very good care of yourself. I am.grateful to hear your story since I am new at this. Have fun

.

Liby57 profile image
Liby57 in reply toWallysma

Thank you, it is a relief to get here and as I mentioned this forum is really amazing, lots of lovely friends who will help you through the difficult times and who will be able to give you lots of advice and information to help you get better. Good luck and best wishes x

CarolF1312 profile image
CarolF1312

Thank you so much for posting your good news.

That gives me so much hope at a time when I'm struggling to get down below 3.5mg. After almost two and a half years.

Enjoy every minute of good health and I hope PMR never bothers you again.

PMRpro profile image
PMRproAmbassador

Great - what we need is a corner to put all the recovered to show them off!! All the best - but don't go away altogether!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

👋

jinasc profile image
jinasc

Stick around please, even if it is just occasionally - being a seen it, done, it and got to remission gives everyone a boost and hope.

Mind, always look after your self.

Liby57 profile image
Liby57 in reply tojinasc

Thank you, I will drop in, I had lots of support on Healthunlocked. The early days of my PMR onset were very difficult and very frightening. Hopefully I can provide some support to others. Good luck and best wishes to you.

daisylazy profile image
daisylazy

So pleased for you Liby 57.Enjoy your new life.

123-go profile image
123-go

Thank you for sharing your encouraging news. Now that door is closed I wish you happy, healthy days and years ahead. 🏆🌻

Camelian profile image
Camelian

lovely to read your uplifting post just what I needed to read so thank you and good luck.

Bcol profile image
Bcol

Excellent news. Always good to read such positive posts.

HeronNS profile image
HeronNS

🌈🏆

Ralberto profile image
Ralberto

That's great news 👍 How long was your journey from starting pred to last dose ?

Liby57 profile image
Liby57 in reply toRalberto

started early May 2020, finished last dose end Nov 2021.

SheffieldJane profile image
SheffieldJane

Lovely, encouraging news! 🌈

herdysheep profile image
herdysheep

Wow, not just found the light, but also the end of the tunnel. Thank you for giving us all such a boost and go well.

Jackoh profile image
Jackoh

Thanks for posting. Always good to hear positive news. Enjoy these days, maybe having something like PMR helps us to never take the good days for granted. 💐

Liby57 profile image
Liby57 in reply toJackoh

absolutely x

Sueloobyloo profile image
Sueloobyloo

That’s brilliant news, it gives hope that you can return to normal, thank you for sharing your good news and best wishes for the future 😊

Vaggers profile image
Vaggers

So pleased to hear of your recovery Liby57. I came off all steroids in March, two and a half years after my diagnosis of polymyalgia. I have been reluctant to announce this in case I have a relapse, but so far, so good. I still read the posts on this forum and, like you, I literally do not know how I would have managed without their sound advice and kindness. Especially as the rheumatologist discharged me and my GP was hard to get hold of.

Thankyou

Liby57 profile image
Liby57 in reply toVaggers

That’s brilliant news, we’ll done and thank you. Like you I wasn’t sure about posting my news but I felt it was important to let those who have just started with PMR or are in the middle of it know that it is possible to recover from PMR. When I first started with PMR I was terrified, thought my life as I knew it was over and that I would be in pain forever.

Sending best wishes, may your good health continue. 🤗

Vaggers profile image
Vaggers in reply toLiby57

sending best wishes to you to Liby57. I agree it is good to let others know that there is a light at the end-of the tunnel, though some tunnels a longer than others. I too was terrified in the beginning it was so sudden and inexplicably horrible pain. This forum was my saviour.

Staffieblue profile image
Staffieblue in reply toVaggers

More positive news wishing you well , 💐

Pusph profile image
Pusph

Lovely to hear some positive news and a positive outcome! How long did it take for you out of interest?

Liby57 profile image
Liby57 in reply toPusph

I started with PMR early May 2020 x

Herman99 profile image
Herman99

Amazing to hear and long may you continue life as it should be...🥰

Tapestry1057 profile image
Tapestry1057

Really good news….think that’s what we all need at the moment. Totally agree with your comments about this forum. Well done and enjoy your new life now.

MamaBeagle profile image
MamaBeagle

Great news! Long may you enjoy a painfree and active life 🥰

Nightingales profile image
Nightingales

Excellent news, May it long continue

Ridge profile image
Ridge

How lovely and thank you for thinking of us all! How long was your journey?

Liby57 profile image
Liby57 in reply toRidge

The support and advice from the forum really helped me. I know how lonely it is when you are suffering and although friends and family try to support you, they don’t really understand your experience, your symptoms or your feelings. I started with PMR beginning of May 2020 and stopped taking Pred end of Nov 2021. x

Sending best wishes x

Ridge profile image
Ridge in reply toLiby57

wow a real short one!! Lucky. And all the best.

Liby57 profile image
Liby57 in reply toRidge

Thank you. How long is it for you?

Ridge profile image
Ridge in reply toLiby57

Four years. I know someone who got over it in 6 months though.

Meggsy profile image
Meggsy in reply toRidge

Me too! My jaw dropped when she said she was off prednisone in 6 months.

Liby57 profile image
Liby57 in reply toRidge

19 months in total to stopping Pred. I do feel lucky as I am very aware that for others the journey is considerably longer, It isn’t a race to get to zero, the important thing is to look after yourself, go at your own pace and listen to your body.

Wishing you all the best 🤗

Plains profile image
Plains

thank you for posting, you give me hope🌻

Lonsdalelass profile image
Lonsdalelass

Brilliant, and all the best for the future!

Rottsuzi profile image
Rottsuzi

that’s fantastic, good luck and best wishes 💗

Ashington52 profile image
Ashington52

brilliant news - I’m delighted for you.

FRnina profile image
FRnina

Thanks for posting! So encouraging for all of us. Keep fit and well.

Staffieblue profile image
Staffieblue

Thank you for such a positive post only read it this am , best start for the day .

Enjoy it all 💐

Such an uplifting messg today , one we all dare hope for but know it can be round the corner anytime soon! Perseverance patience springs to mind. Plus join this wonderful group for constant support & advice . Long may it continue Libyan as I'm certain it will. Now every days special! Well done ! Big hug!

Liby57 profile image
Liby57 in reply to2Yellowdaffodilsx

🤗

Posey1 profile image
Posey1

Thank you so much for posting. Gives us all hope that there is light at the end of the tunnel. I'm sure we all agree with your comments re the forum and the lovely people on it. Very happy to hear you are now well, long may it continue.

All good wishes to you. 💐

toniaell profile image
toniaell

Thank you I needed to read this today, hopefully there will be an end to this awful illness and life can get back to some sort of normality. So lovely to read!

Amkoffee profile image
Amkoffee

 Happy to hear your good news. I hope you never have the need to come back to this site.

Harrywogan profile image
Harrywogan

Liby57, gives us all a lot of hope and keepwell

Uglow profile image
Uglow

absolutely fabulous. I shall try to be you xxx

FootieFanatic profile image
FootieFanatic

Hi. That's fantastic and great to read. Stay well.

oscarandchloe profile image
oscarandchloe

Thank you. It's a long and lonely journey, your great news gives us all hope. I read all the submissions on this forum every morning, I have learnt so much and felt among friends.

Alebeau profile image
Alebeau

Congratulations 👍

How many years did it take?

You should print yourself a Graduation Diploma for beating PMR to hang in your house. 😀

Liby57 profile image
Liby57 in reply toAlebeau

Thank you. I started with PMR early May 2020 and thought my life as I knew it was over forever.

Wishing you good luck and best wishes. x

powerwalk profile image
powerwalk

congratulations, keep well. 🥳

Liby57 profile image
Liby57 in reply topowerwalk

thank you, you too x

Sharitone profile image
Sharitone

Yeay! Great news!

Missus835 profile image
Missus835

Awesome news! Thanks for sharing and instilling hope in all of us. All the best!

Elephants2019 profile image
Elephants2019

Thanking you for sharing your wonderful news! Can truly say that I am sooo happy that you can close this chapter of your life. (Brings me smiles)Wishing you all the best in going forward.

Liby57 profile image
Liby57 in reply toElephants2019

🤗

Tiggy70 profile image
Tiggy70

That’s great news and gives much needed encouragement to those of us still on this journey💐

Southmead profile image
Southmead

That’s really good news, gives me hope that one day, perhaps…

Liby57 profile image
Liby57 in reply toSouthmead

You will get there🤗

singingloud profile image
singingloud

Excellent news! Enjoy your renewed life!

9lives profile image
9lives

aww that’s brilliant news, and so good of you to share it with others on this site. It’s especially encouraging for those s who are struggling with things to know there is light at the end of the tunnel. I have been on this PMR journey for 6 years and am down to 1mg and have been for the last year. I recently started to gradually reduce to 1/2 mg but I’m taking it really really slowly xx

Well done xx

Carole xx

PMRCanada profile image
PMRCanada

Your post serves as wonderful inspiration for all of us still trying to get to “0”. Having gone through such struggles, I’m assuming that enjoying all the wonderful enriching activities are all the more special and cherished.

All the best to you and continued life without PMR.

gingerraspiller profile image
gingerraspiller

Congratulations! I am at 15 mg and tapering. It seems the final taper - from 5 mg and below is the toughest and where you are likely to run into adrenals not kicking in.

I am curious - what taper did you use? Did you have issues with your adrenal glands not kicking in as you tapered off prednisone?

Thanks and again, wonderful news!

Ginger

lkcreedon profile image
lkcreedon

Great news for you. Continued good health. Thanks for posting. All the best.

Jacuzzi profile image
Jacuzzi

Congratulations on completing your journey. Wishing you a pain free future x

Liby57 profile image
Liby57 in reply toJacuzzi

Thank you. 🤗

canadacando profile image
canadacando

Hi - this is great to hear, very encouraging! I am only 2 weeks into Prednisone after PMR diagnosis. I became concerned reading on this forum how so many have flared after going into remission, and also from so many who have been trying to taper after years of trying. My only experience is with my mom who got PMR at 83, and then my hair dresser. Both were tapered off fully from Prednisone in one year, and 12 years later, neither have ever relapsed. So, I was assuming that would be me. Other stories of people with more significant hardships I've read about here were discouraging. I'd love to hear from those of you who had the "easier" way, and were able to get through this in a shorter period of time, i.e. a year or so.. Are there any of you luckier ones out there? I'd love to hear your stories, as I still want to believe I can be done in 12! Thank you.

cycli profile image
cycli in reply tocanadacando

How we all hear you and hope for this. Take heart from the lucky ones but don't despair if the journey takes longer. No hope is false but don't think it will happen just because you are desperate for a quick remission. I'm sure the power of positive thought helps but I and others have found this condition sets its own rules. Be strong and patient and learn all you can to help yourself

canadacando profile image
canadacando in reply tocanadacando

Yes, cycli, thank you for the reminder - patience is such an important trait! I'm still hoping for the "easy way out", but am prepared to handle what comes my way. Having a community like this is so helpful and assuring!

PMRpro profile image
PMRproAmbassador in reply tocanadacando

"Both were tapered off fully from Prednisone in one year"

They were very lucky - it is very unusual to be through PMR that quickly, fewer than 1 in 5 achieve that. There aren't actually many who flared up again after going into remission - there are quite a few who have been encouraged to go off pred too quickly without remembering that even 1/2mg of pred can be enough to keep a very low level of disease activity under control. The lower the slower - really applies for the last couple of mg.

You are very unlikely to hear from people who got off that quickly here - people tend to arrive at the forum because their doctor led them to believe it would be gone in 2 years and it wasn't or the doctor is making them feel as if it is their fault they are still on pred. By its very nature a support forum tends to have patients with a longer history and when they are off pred they go off to live their normal life again rather than hanging around somewhere that reminds them of a period of their life they found hard.

canadacando profile image
canadacando in reply toPMRpro

Thank you, that is very helpful and appreciated!

cycli profile image
cycli

We all need to hear this. Thank you Liby57. Have a wonderful pred. free remission.

Gin13 profile image
Gin13

How lovely to read this on a dreary morning, wonderful news - take care of yourself 😊

Blossom20 profile image
Blossom20

Thank you Liby! That's very uplifting! How long were you on Pred?

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