Prednisone as a prophylaxis? RS3PE / PMR

Bones, joints and muscles
1

Hi to all! Been away, but reading occasionally.

I have a question, but first, background:

67 yo. male 2 bouts of PMR, first @ 53, second @ 64. 18 months each.

After lots or reading and research, I think I had/have RS3PE (Remitting Seronegative Symmetrical Synovitis with Pitting oedema) a subset of PMR, usually involving hands and feet along with the usual joints..

After 2 years in remission, and stressed from lots of hurricane damage, I feel just the niblings of the PMR/RS3PE  symptoms...arthritis pain, symmetrical generalized, several joints, hand and feet involvement. For me, the two PMR/RS3PE experiences, symptoms actually came on gradually for a month or so, then increased to the familiar full PMR debilitation. 

I found a Medical article titled " Remitting seronegative symmetrical synovitIs with pitting oedema (RS3PE) as recurrence of aborted PMR " .  If you Google that title, the scholarly article should show in the search results.

Lots of history here, but here is the question:

Can early administration of low dose prednisone reduce the effects of PMR or and RS3PE in severity or duration?

This is question is based in my belief that PMR/RS3PE is not SO sudden, that the full onslaught of the symptoms come on slowly with a generalized feeling of unwellness, and consequently we delay attention to the brewing storm of PMR to come.

I any of you have any experience or knowledge on this, please post. I have an appointment with my Rheumy on Monday 11 December 2017, and will pose my question to her, and let you know my result of the consult.

 

 

2

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. :-)

3

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.

4

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.

5

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.

6

I had an amazing increase in flexibility after the PMR left a few years ago. Thanks for the encouragement, will let all know about the consult result Monday.

7

Me too, on the Osteo. With my multiple go arounds with PMR/RS3PE I'm able to tell the increase auto immune response due to synovitis. The old article referenced in original post suggests that pred may help suppress the body autoimmune response. I've been off pred for 2 years, and will wait to my consult Monday to take any, but if I was on a desert island, I would take  2 mg prednisone for effect. I suppose the Rheumy will order blood work, and want to give her pristine chemistry. Interestingly, when I have  auto immune activity, I have what I call "mild old man phlegm" , requiring light throat clearing. When my PMR/RS3PE remissed 2 years ago, "old man phlegm went away also. Will post after consult, thanks for reply.

8

Congratulations on zero pred!!!! Remission from PMR is as close to redemption as I have ever experienced. I hope to stay here in the no pred zone, will post after consult and results from  Monday. Thanks for reply, and good to see you again!

Dan

9

Hi Eileen, good to hear from you. Still in North Italy? 

Ah, to control the auto-immune spiral up! the article intimates that pred may help suppress that response.

That would be the holy grail, to control the initial "run up" of the auto-immune response, most of us have full blown PMR before we start the pred.

Will let you know after the consult, and my reaction to low dose pred 2mg+- after Monday.

Thanks for reply.

Lab Rat Dan 

10

Yup - recognise the "old person plegm" - I'm fairly sure it is a sign of borderline extracranial GCA.

11

Danrower, I believe I am more flexibility, but my balance is not as good, it does seem to be getting better as the Prednisone dosages are reduced. Time will tell! Think positive with a smile.:-)

12

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

13

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"