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 🤗😘
Written by
Liby57
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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.
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
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
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.
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. 💐
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.
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. 🤗
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.
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.
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
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.
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!
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.
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!
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.
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.
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
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.
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?
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.
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
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!
"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.
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