Morning Ramblings

I love your question. I can’t wait to see how folks weigh in on the implications of seeing PMR as a self limiting condition as you (and I — because I agree) define the term.

Richard, some people seem to get over PMR, an autoimmune condition, some do not, they always have a level of inflammation. The Prednisone helps to control inflammation, some of us get PMR pain free, many of us always have some PMR pain. My question, what causes PMR, what is the genetic information that has it in families or groups of people. I am happy we have Prednisone, I don't know where I would be without it. Good luck on your journey, try to stay positive and smile. ??

That is the theory and probably true for 95% of patients. But it can take a long time to resolve - the median duration of PMR is 5.9 years according to a recent retrospective study and less than 20% are able to get off pred in under 2 years. It is said these people are at a higher risk of a relapse at a later point. I had had PMR without any let-up for 5 years before a diagnosis was made and after 9 years of pred it isn't clear that the PMR has gone away yet - I have flares of the symptoms every few years without having been able to get off pred in the meantime. 

After over 9 years on the forums (3 of them and thousands of members) I can't remember more than a couple who refused pred and then said it had gone away. There are a lot, both PMR and GCA, who used pred to allow a better quality of life in the meantime and have been off pred for years. The risk in not treating PMR with pred is that it is felt by experts to more likely to progess to GCA as the inflammation builds up and that puts your sight at risk without high doses of pred. Long term low dose pred is far less risky than even relatively short term use of the very high doses required in GCA. And unmanaged inflammation in the body does increase the risk of later developing other things - such as peripheral vascular disease and some cancers.

Thank you Eileen for your thorough reply to my post about the self limiting nature of PMR.  I guess that prednisone does not do anything to “cure” PMR, it just treats the symptoms until the condition just runs it’s course.  Running it’s course could, however, mean a lifetime considering that it usually strikes people late in life.

That's correct - I'm not sure how many people develop it so late in life it is a lifetime thing because of that. I do know a fair number of people who have developed PMR and/or GCA in their late 70s and even 80s who have got off pred after 4 or 5 years. Since I was 51 when it started I'd like to think it might still go away sometime - since I'm hoping to live for some considerable time yet!

A study done some years ago showed that taking 5mg of pred at night suppressed adrenal function more than taking 15mg at 8am. So many doctors think that all pred should be taken at 8am to avoid adrenal suppression and make stopping it easier.  That is all very well if you are taking a short course of pred, say up to 6 weeks or so and reducing all the time - a common way of using pred in asthma, COPD and chest infections. 

However -  if you are taking above 8-10mg of pred for more than a month or two, the adrenal glands don't produce any extra cortisol, the natural corticosteroid that is essential for your body to function properly. When you get below that dose they have to wake up again and undertake a staged return to the workplace - and so you need to reduce the dose slowly over a few months rather than a couple of weeks as you would with short courses of pred. 

If you are on pred for months, even years as most of us are, our adrenal glands will have gone to sleep anyway, irrespective of when you take the dose of pred. In that case - it makes far more sense to take the pred when it works best for YOU. Another study showed that the optimum time to take ordinary pred to avoid morning stiffness is about 2am - and that really does result in next to no morning stiffness,  you are awake and ready to go, no waiting to be able to get out of bed!  A special form of pred was developed as a result of this work which you take at 10pm and it releases at 2am - I use it and it is great. Unfortunately is isn't available in the UK on the NHS and since it costs up to £80 per month it is not used a lot there. In the USA Rayos is sometimes covered by insurance so it might be worth asking - but is a ridiculous price for some reason, thousands of dollars.

So one alternative is to wake early and take your pred, say 5 or 6am, depending on when you usually get up. Taking the pred then and settling down for another couple of hours gives the pred time to work. Or you can split the dose if it doesn't work for the full 24 hours, say 2/3 of the dose in the morning and the rest later, everyone is different so it is difficult to say a particular time and a bit of experimentation is needed.

And the return of pain - did you take the pred and think you were back to normal and try to do all the things you haven't done since the PMR started? That doesn't work. All the pred does is mop up the inflammation - it doesn't touch the actual disease process, an underlying autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks various cells in the body, leading to inflammation and damge to the cells - which is painful. It leaves the muscles unable to tolerate acute exercise - it doesn't mean you can't exercise but you have to start from scratch and "train" all over again. The muscles develop far worse DOMS (delayed onset muscle soreness) than you are used to and take much longer to heal. You have to start with VERY small and build up VERY slowly: 5 mins walking perhaps the first day and adding 1-2 min every few days, with rest days between until you find that you weren't sore at all on the rest day - then you can get a bit more adventurous, but only a bit. 

It sounds crackers - but it does work. Ask Michdonn - at Easter last year he was in a wheelchair because of PMR, he spent the winter as a ski instructor and now is riding his bike for miles around the mountains. He started with staggering 1/6 of a mile with his cane!

Karenfizz, EileenH has told my story, my Rheumy rushed me into a very bad flare, I stayed on a 30 mg for 6 weeks and started tapering. I have been PMR pain free 13 months. I split my doses after breakfast +/- 70%, +/-30% at bedtime. I had experiment to get the right procedure. Everyone of his different so you have to find out what works for you. I feel good all day, no fatigue, in fact I am go out to ride my bicycle now. This forum and EileenH has been a great help to me. Good luck on your PMR journey. Stay positive and try to smile. ☺️

Thanks very much for that; I have stopped all exercise whilst I see how this first 6 weeks goes on pred - initially when it started to feel better I went for a swim and OMG you are right about the DOMS - couldn't move for 2 days. so I'm not sure why it is still a bit erratic; I had 2 good days over the w/e but then back to lot of hand/shoulder pain; maybe the difference was I had a drink and some red meat, both f which I have been avoiding to try and be more anti inflammatory diet. Is is important to take food before the dose if i try at 6am?

Karenfizz, the key is moderation. Set a goal for each day. 100 yards then 110 yards, small increase in time or distance for each day. I know it seems unnecessary, but believe me it works! Take your time you will be much better off in the long run! Think positive and try to smile. ☺️

Not only necessary, but essential if we are to avoid a two steps forward three back situation!

A pre existing condition known as Failed Back Surgery Syndrome has been causing me problems with pain for over 20 years. It varies from low pain to medium to occasional, extremely painful flares.

One of these flairs happened last autumn (2017) and my GP prescribed Pregabalin.  When I developed pains in my groins, even though I had not experienced this before, I put it down to part of my usual back problem.

I then developed awful pain and stiffness  in my hips and shoulders, again I put the pain in my hips down to the back problem and believed the pain in my arms and shoulders was due to using them to lever myself about while my back was bad!! I kept hoping the Pregabalin would kick in.

I couldn’t sleep for more that an hour and a half before the pains in my hips and shoulder would wake me up and I had to get out of bed. Then getting out of bed was a nightmare and I really had to gather my courage to use my arms to get to a sitting position. Then getting into a standing position and trying to take the first few steps brought me close to tears.(I am used to pain, but this was something else!) Then getting a dressing gown on! And clothes – they  had become impossibly heavy!

I spent most of the night hours sitting on the settee, in which position I could get reasonably comfortable, listening to the radio and drifting in and out of sleep until it was time to take the next dose of heavy painkiller, which didn’t even work but usually enabled me to get another hour and a half’s sleep. Then back to bed reversing the whole painful process in order to lie down - then trying to work out how to pull the duvet over myself.

My partner said I should wake him but I felt he needed his sleep or he might go sick as well. And if I’m honest I tend to cope  better on my own.

The GP increased the Pregabalin. I told him that at this point the most distressing thing was my arms and shoulders as they affected everything I did but he was confident that the Pregabalin would sort it. 

This went on for a solid 8 weeks with only a few hours respite in the afternoons.

Then, I suppose in a way luckily, my hands seized up!  I woke one morning and the dominant pain was in my hands and they were set like claws. I managed to see the GP that day and he took a blood test.  They returned a few days later showing inflammation  and he prescribed PREDNISALONE! – 30mg a day for 7 days.

I took the first dose in the morning and woke that night thinking I HAVE NO PAIN, ANYWHERE!! My fairy godmother had waved a magic wand!

Unfortunately after I had taken the final dose the pain walked back in again. This time the GP prescribed 30mg pred for 5 days, decreasing by 5mg every 5 days which would take me to my first appointment with the rheumatologist. There I was given a 40mg injection which wore of in 4 weeks.

I am now taking 10mg pred and am mostly pain free.

Adding all the various doses I was given I calculate that in the first month I probably had the equivalent of 26.25mg pred a day which is somewhat higher that the 15mgs I would probably have been prescribed if I had been diagnosed with PMR when my fingers first seized up.  I am very relieved that I went down to 10mg without any problems. On Monday I will start with 9mg for a month.

Thanks to all the input from people on this site I am inspired to get better! I have been practically housebound and inactive for nearly a year.  Because of my existing back problem I have not been very physically active for years but having seen the video on the power of the brain and pain I now understand that even these problem areas can be brought back to health if I go very, very gently.  A few gentle stretch and resistance exercises, a very short walk every day - a long term plan!  The housework is really the danger zone, I tend to do too much on good days and my body objects, that needs pacing as well.

So let’s hear it for PRED – it allows us, so long as we treat the PMR with respect, to lead relatively normal, and in some cases very active, pain free lives.

All the best

 

 

Thanks for all the information Eileen; it's really helpful. Last night I took my 20mg dose at 2am  when the shoulder pain woke me and was much better getting out of bed this morning. Is it important to have food before taking pred as my GP said have breakfast first - not ideal at 2am!

A glass of milk or a yoghurt is felt to be adequate.

I’m so sorry to hear about your back issues. You might want to borrow a copy of a book called “Crooked: outwitting the back pain industry” by Cathryn Ramen from your local library.  Wrt the prednisone, my wonderful cat wakes me up at 4:00 am, I have my 2/3 pred dose with water and a couple of saltine crackers, feed the cat, and go back to sleep. Splitting the dose really helps. 

Hang in! Sounds to me that you might have turned a corner!

Oops! I think my library suggestion wrt the back pain industry was meant for Kate. Not that it isn’t helpful for all of to know about....

Thanks Harrie, I wil try and get hold of a copy. I am quite into Explain Pain by  GL Moseley and DS Butler.  Can't afford the book but have bought the handbook. According to this my brain is now on red alert to any possible thing that may hurt me.  I see it as an over anxious grandparent who won't let the child do a thing!  .If I can commit myself to doing a little a day and resist overdoing it on good days, I should be able to 'creep under the radar' and over time my brain will calm down.  It may take a while, my brain has been on red alert for years!!

It is interesting that getting PMR has led me to understanding this but now at 71 I am becoming optimistic!!

Hope you are doing OK

Kate

Believe me Kate, I understand that all too well. I was rushing a taper from 8-7mg had a flare. Following doctor's directions only increase a little at a time. Finally got the inflammation under control and stabilized at 30 mg. How is that for two steps forward and three back. Thank God I found the forum in the middle of that. Now I'm at 7 tapering to 6.5, riding my bike, thinking positive with a smile. ??