PMR for 4 years: Hi all, My name is Sheila and I... - PMRGCAuk

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PMR for 4 years

Molymath profile image
12 Replies

Hi all,

My name is Sheila and I live in Canada, and was diagnosed with PMR exactly 4 years ago at age 55. I am a nurse, now retired, and had never heard of PMR. After the sudden onset of symptoms, I did some google research and knew beyond the shadow of a doubt that I had PMR. CRP and ESR were elevated, and I was a classic case of relief within 2 hours of starting Prednisone - started at 20 mg and quickly reduced to 15 mg. I've had the good fortune of meeting PMR Pro and her OH when they were in Calgary a couple of years ago. I was so grateful to her in particular, as she has been provided constant expert advice for many many years. Many others have been generously providing anecdotal advice as well!

At this 4 year point, I am taking 1 mg a day. I did the DSNS reduction and encourage everyone to listen to the experts on this forum, not your family docs or rheumatologists. They just don't know enough about PMR.

Many thanks to all of you who have given countless years to helping others with this painful condition. There is a light at the end of the tunnel. I still have my stiff days, and absolutely believe that even 1 mg a day of Prednisone makes a difference. I've tried no Pred, and find that the stiffness returns, albeit at a much reduced level.

So grateful for this forum.

Sheila

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Molymath profile image
Molymath
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12 Replies
1Purplecrow profile image
1Purplecrow

Agree!!

Hindags profile image
Hindags

Congratulations on finding what works for you and sticking with it.

Jackoh profile image
Jackoh

Thanks for your encouragement Sheila x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

So agree - even 0.5mg makes a difference sometimes - even though the medics look at you and roll their eyes! But what do they know 🤷🏻‍♀️

Pym1 profile image
Pym1

New to this! Explain DSNS please.

Thanks

Pym

PMRpro profile image
PMRproAmbassador in reply to Pym1

Dead Slow and Nearly Stop approach to reducing your pred dose:

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

Good to hear from you Sheila xxxxx

Ladybird25 profile image
Ladybird25

Hi Sheila

I too am a nurse, had never heard of PMR, and was diagnosed in August last year, age 54. I returned to work after several weeks off sick, but struggled to keep up (long commute and busy, senior role), so have had to take time off sick. There are only three in our team, so they are feeling the pinch without me, although someone has been seconded to work with the team two days a week. Did you continue working with PMR and eventually retire due to ill health or retire through choice? My plan had always been to retire in my 60s when I can receive the state pension (retirement age keeps going up in the UK...), so I am planning to return to work eventually, although I expect I'll still be taking Pred and having PMR symptoms.

Thank you for your update and positive encouragement!

Molymath profile image
Molymath in reply to Ladybird25

Hi Claire,

I retired by choice, but I found that my stamina was impacted by PMR, and I just couldn't keep up with the things I had been doing prior to PMR. The most important thing for me was to reduce stress as much as possible and do things in moderation, including exercise. The DSNS reduction in Prednisone is the way to go. So many of us are in a hurry to get our dose down as quickly as possible and for me, it invariably caused flare ups. The pain eventually lessens when we slooowly reduce. I'm in no hurry to get off Prednisone if 1 mg is working for me. In most cases, PMR eventually remits, so patience is a virtue.

I know it's a tough decision about going back to work. The best advice I can give if you choose to return to work, is to ease back in, and put yourself ahead of your job. Life is too short.

Mary63 profile image
Mary63

I fought against retiring for 20 months, and eventually succumbed to retirement in late July this year. It took 6 weeks or so but I now feel so much better. Retirement has enabled me to pace myself, sometimes have a pm nap....Before I was just too tired.

Molymath profile image
Molymath in reply to Mary63

My late father frequently quoted his favourite poem 'The Indispensible One' ( google it) after he retired. In fact, when I wrote his eulogy, I made reference to that poem because it was so much a part of his belief system.

I absolutely felt responsible for keeping things running smoothly in the workplace, and once I made the decision to retire, I too, recognized how indispensible we really are. I would hate to see anyone remain in a career because of a sense of responsibility, when it is financially feasible to retire.

Just speaking from experience.....

PMRpro profile image
PMRproAmbassador in reply to Molymath

Yup - 6 months after your funeral your colleagues will be saying "who?"

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