Prednisone as a prophylaxis? RS3PE / PMR

Danrower, I will have had PMR two years this spring, but for years before, my back, shoulders and neck were stiff, my wife was always telling me to turn my head, but I couldn't. Now after being on prednisone, I can turn my head. Was this stiffness the first sign of PMR, I am beginning to think so! Good Luck on your journey, think positive and try to smile. :-)

Interesting question.  It is remarkable how many people say they think they had signs of the disease long before it twigged that there was something quite definite happening, and a diagnosis made.  On the other hand there are people who say they felt they were perfectly healthy, even quite athletic, and PMR hit them like a bolt from the blue.  Does this tally with the theory that there are several different kinds of PMR?

For the record, I was one with fairly longstanding but initially minor pain issues which I put down to osteoarthritis, until I was practically crippled and a new doctor recognised the signs.  I would not be surprised if had I remained untreated for some months longer I'd have developed GCA.

Good to see you back on Patient Danrower. I had a few 'niggles' before the full effect of PMR hit me in July 2014, was misdiagnosed initially and finally put on Pred after going back and seeing another doctor who immediately prescribed Pred.  Symptoms went within 4/5 hours.  Started at 30 mg reduced to 25 a week later and down within a couple of months to 15 mg.  Started the DSNS method down from there, over a period of just over two years, before I finally got to ZERO in January 2017.  Took several months to 'feel' better and to get the pred out of my system and its side effects.  Was 73 when it started.

I doubt it. The pred deals with the symptoms and not the cause. The propensity for the underlying autoimmune disorder to reactivate remains with almost any autoimmune disorder. I also had the RS3PE symptoms with PMR but I rarely have the problems with the RS3PE part now when I have flares - which of course for me always happenw hile I'm taking pred anyway since in nearly 14 years I have no evidence of the PMR ever having gone away.

 But I think the line early in the paper that they represent a continuum of autoimmune disease is important - and I think any flares may get to one level but not further. What early administration will do is reduce the effect you feel - it is already managing a degree of inflammation but you will likely still have to increase the dose at some point if it progresses to PMR. I do. The dose I'm on is enough to manage the RS3PE but not when it gets to the PMR end.

Hi Danrower. I started with the PMR in March of this year Age 53. Looking back, I have had many of the sympts you describe for years. Low/mid/upper back aches, neck stiffness and stiffness of the hands and toes. Also, the old man phlegm!!! I was working outside building for 15 years and just put it down to wear and tear!! Since starting on the pred, all those symptoms have gone! For the month or so up to the full onset of PMR I was noticing unusual pains that were very localised and unexplained! For instance, pain in the palm of my left hand, just below the inside of my left ankle protrusion and just below the inside of my left knee. Not on the joint but slightly down the leg. All felt like a bruise as if I had hit those areas. All disappeared once on the pred. The hip bursitis and stiffness/weakness of the legs was the worst for me initially, but since then I have very little issue with them and it is my hands that have been the most problematic! I am down to 15mg/day from 30mg/day and all is good atm. I work shifts and I noticed that the mornings I got up at 04:45 my hands were the best! I think it was due to the fact that I was up and moving my hands before the nasty hormones had time to settle into them. Conversely, I noticed that getting up at 07:00 on the other shift had given my hands a chance to stiffen up and they got worse until after my 10:00 dosage. So, rather than get up early all the time, I now take two thirds of my dosage at 22:00 on the later shift and 50-50 on the other!! Touch wood, it's working a treat and I plan another drop next week! Very interesting about the RS3PE and thanks for bringing it to my attention. I will mention it to my Consultant next time I see her! I hope you manage to stem the PMR tide before it returns.

ATB.

Steve

Lab Rat Dan here.

Saw my competent Rheumy yesterday, and she agreed that with my moderate levels of discomfort I should start on 5 mg pred to mitigate the general inflammation I'm feeling. I started 3 mg this morning, after 2 years off. with the additional hope and goal that this low dose may prevent a spiraling up my auto immune system, and stave off  the onset of full PMR / RS3PE. I have often mused here about the control of this autoimmune issue. Most of us have had full blown symptoms of PMR / RS3PE BEFORE  any effective mitigation by prednisone. I have had 2 go arounds with PMR / RS3PE, and have often mused if earlier intervention with pred would have affected the duration and severity.  I'll try to post my data here.FYI, I have had lifelong intermittent  dermatitis on hands, which was reduced while on pred. It has flared now, along with the other inflammation, and will report on that also.

Lab rat Dan, "out"