Managing PMR after 1 year

[Bignorhill]

I was diagnosed with PMR in late June 2018 after being told I just had a stiff back by the GP and by a Physio. I was given back exercises to do but found it difficult to get back up after laying down. Obviously the exercises did nothing to reduce the pain.

Went on to a high dose of Prednisolone (40mg) which tamed the pain but once I got down to no drugs by Christmas the pain was in full swing again in my upper back, lower back and shoulders. Went back onto high dose of Prenisolone and am now back to 7mg a day but suffering a lot of pain in my upper back, hips and neck. The Rheumatologist that I have been referred to has told me I must come of the Steroids. When I asked about the returning pain was just told that I just have to live with it.

Due to all the pain, while still trying to compete in running events with a very stiff back which creates problems with the piriformis muscle and hips, I tried Acupuncture which did not seem to reduce the pain but was a relaxing experience.

Has anyone tried a change of diet to remove items from their diet that are said to aid inflammatory conditions with dairy being the worst culprit?

Having our kitchen totally changed I was left with the need to paint the ceiling. Painting the ceiling with a roller cause great pain in my neck the next morning, it hurt like hell to lift my head up in the morning. So it seems the PMR attacks the muscles you have just been using, less neck pain this morning after no painting the day before.

I am part of a small running club of 30 Orienteers and when I asked around it turns out 3 other people in the club have suffered PMR, not 1 in a thousand. So is there a link between the level of physical exercise done and PMR? I was doing the equivalent of 20 marathons a year in orienteering competitions. My problem is I do not want to stop running, so despite the great pain involved, I have still done the equivalent of 20 marathons in the last year. I do not take painkillers because I do not want my body to think that things are in control when they are not.

Having now suffered for over a year I can sympathise with other sufferers but other people do not realise the pain involved and the fact that the pain is there all the time just worse in the morning and at night. I hope a day comes when I can sleep for more than 2 hours at a time.

[Mary63]

I would change my doctor. Crazily quick taper which was bound to lead to problems. Sounds like you have persistently overshot the dose you need to deal with the inflammation. I, for example am stoicly trying to get from7mg to 6.5mg after 3 and a half years. And I am not unusual.

Where do you live? Could you afford a private appointment?

Others will be along soon with links to how you SHOULD be treated .

I wish you the best.

[DorsetLady PMRGCAuk volunteer]

Hi,

No wonder you are in a mess after your treatment - or lack of it!

Some comments/questions -

40mg (very high starting for PMR) to zero within 6 months is virtually suicidal! As you found out.

What dose did you start on again? Whatever it was, you’ve obviously, again, gone below the level you actually need on a day by day basis.

Why has Rheumy said you “must” come off steroids? Does he think it’s something other than PMR?

As you have discovered PMR and Pred does affect the muscles - so ease off the running a bit. Maybe not completely, but certainly be more selective about what you do. And don’t try and paint the ceiling - not the easiest thing to do at the best of times, but with uncontrolled PMR - a definite No,no!

Have a read of this, and although you may not like the contents please take time to think about them and adjust your lifestyle a little to accommodate your illness. At least if you understand it, it may help

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"The Rheumatologist that I have been referred to has told me I must come of the Steroids. When I asked about the returning pain was just told that I just have to live with it."

What utter drivel - find a rheumatologist who knows their stuff, He doesn't.

PMR has a median duration of management with steroids of 5.9 YEARS, not months

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

If you change anything - it is your doctor you should be looking at.

[Hidden]

I’ve often wondered if there was a link to runners/cyclists and pmr. Maybe the constant stressing the body without recovery can help “push” pmr along. Also, I’ve learned you need to just stop running or doing anything intense for a few weeks just to understand where your body is with pmr and get an established baseline you can build upon. Then start adding as your body lets you. You cannot work thru pmr. Pmr will continue to nag your body when overdoing it causing it to be agitated and take longer to recover

[SheffieldJane]

🤦‍♀️ I agree with all the advice you’ve had so far. This is not the kind of pain you can “ just live with”. I’d like to see your Rheumatologist try. New doctor, start again gently and by all means do everything you can to support your general health.

[piglette]

There is no way I could just live with the pain, I would be suicidal. Have you talked to the other people in your running team who had PMR to check if they had a good doctor or not?

[Bignorhill]

People in my running team live in a different area to me. The issue is not with the Doctor now but with the Rheumatologist. When trying to get a diagnosis I saw 5 different doctors at various places, so not sure a good local doctor exists. When I look at the local surgeries most of the Doctors seem to be most interested in child care.

I work in Social Care and am aware of a lot of Doctors in the area and yet to find one that is really that interested in older people's issues.

Where my Father lives, he is 91, I have found the GP very limited in helping with issues, she has not gone on Maternity Leave and help has gone to near on zero.

So it is only if someone in the Winchester area has found a Doctor that really knows about PMR is it worth moving.

[Skinnyjonny]

Hi Bignorhill - When I was 51 year old I was diagnosed with PMR. I was a senior Fire Officer, ex-PE Teacher and Outdoor lecturer who has climbed 5 of the World's highest summits, ran well over 25 marathons (60+ miles per week), well over 400 half marathons, many extreme challenge events etc etc. I was about to run my 5th London marathon, 15th Great North Run and climb Ama Dablam (Himalayas) when I was diagnosed. I declined rapidly and could not raise my arms for 3 months and due to the inflammation I was bed-bound and in a wheel chair for a while. There has been a lot written on my progress plus an ITV documentary and BBC news item. There was also an invitation to meet HRH Queen Elizabeth. I was a PMRGCAuk North East Trustee and now PMRGCA Lead for the North East. I successfully followed a 21 month Steroid reduction programme, and never once yo-yo'd. I also started the Paleo Diet and have taken Vitamin D, Omega 3 and Spirulina (seaweed) ever since. I've returned to half marathons and run 225 parkruns, climbed in the Himalayas twice and Atlas Mountains twice. We have just our third parkrunathon (8.5 parkruns venues in one day) and return to the Nepal Himalayas to climb Annapurna IV (7525m) in Oct/Nov. During the period of recovery and now in remission I was aided by weekly hydrotherapy sessions, physiotherapy and visits to the Fire Service Rehabilitation Centre. You need to rest your body especially for an hour in the morning after taking your Pred, and return to bed in the afternoon if you feel fatigued. Keep a daily log book and maintain the Structured Steroid Reduction programme. You can not reduce more than 10% at any one time and please don't exercise if you haven't recovered. Give your body time to recover and repair itself as your muscles require Oxygen for good health. I gradually returned to parkruns when I was on 8mg after about 6 months. Listen to your body, stick rigidly to steroid reduction programme, read Kate Gilbert's PMRGCA book or I can send you 'Living with PMRGCA' which is an excellent booklet produced by the North East group. You could also visit pmrgca.co.uk/content/home-page for more advice. Good luck with your recovery - "Keep running free with a smile"

[Tiredcat in reply to Skinnyjonny]

I note you say to rest for an hour in the morning after taking the prednisone. I haven't heard of this before. Does anyone else do this? I would be interested if this could help with evening out energy level through the day, with an afternoon nap too.

[Skinnyjonny in reply to Tiredcat]

Hi Tiredcat - I thought it was a well known fact that you must rest having taken your Pred in the morning. We have been advising all our members for the last 10 years and in our comprehensive booklet it states, "If possible, when you wake up, take your prednisolone with a cuppa and something to eat. Then snuggle down for an hour or so. This gives the prednisolone time to work" (page 29) - "Living with PMR&GCA - Towards the Light at the end of the tunnel" (PMR&GCAuk North East Support)

[Tiredcat in reply to Skinnyjonny]

Thanks for replying, Skinnyjonny. I haven't read that booklet, as I am in New Zealand. I am so glad to be connected to this forum where there is so much experience and understanding.

[Skinnyjonny in reply to Tiredcat]

More than happy to send a the 44 page booklet as it's full of excellent advice. Everything you need really.

[Tiredcat in reply to Skinnyjonny]

That sounds great, Skinnyjonny.Will reply as to how we will do that in the morning, have just got into bed, it's 10.50pm here.

[Gary1310]

...I listen to my body....rest whenever I feel like it. Trying to live “stress free”...not easy because my son died one month after diagnosis. Realized that during recuperation, nothing else can take precedence. I just do the important stuff first...then rest. Yes, naps are very good. Starting a short walk everyday. I live on Lake Michigan. Find seagulls and our lighthouse in the sun are good for my spirt. Then home for a nap....