My first post but avid reader of this site. Diagnosed PMR Sept 2015 and have tapered Pred steadily down to 2 mg.
From 10 mg down I've used the DS method and from 6 mg I additionally split tablets to reduce in .5 mg increments. My GP has given me a free hand and for that I'm grateful. I do not have Rheumy supervision. In our neck of the woods PMR is in GP care unless complicated.
Apart from the 'deadly' fatigue that most of us experience, it has been a 'text book' taper, if such a thing exists, down to about 3 mg, when I developed soreness/pain in the joints of my right side - shoulder, hip, knee. More the ligament tissue supporting the joints than the articular bits themselves, I would say. It feels like they tighten. Normal bloods.
Tried an experimental couple of days, elevating the pred again, to the last comfortable level, which as I expected (on account of it being one sided) didn't do anything except depress me, because of the retrograde step, so I reverted to 3 mg. and persevered with tapering. Since then I have reduced by two half mg increments to 2 mg but the joint pain is still there and, I would say, it's getting worse.
My GP has fixed me up with a physio appointment but no diagnosis proffered. It seems as if the physio is expected to come up with the diagnosis which seems a bit unfair. The physio triage technician has already said she hasn't a clue what it could be.
Presently I do Tae Chi once a week and a bit of gentle practice alternate days and do a 2 or 3 mile walk alternate days.
( I'm Type 1 diabetic and the lower pred doses are enabling me to get my insulin levels nearer my pre PMR doses and my weight to move in the right direction)
This " condition " is becoming increasingly debilitating and I feel it is holding back my recovery.
Not even sure this is PMR related. Any one with similar? Any theories please?
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SallyVJ
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Dear Sally, you might ask for further investigations, or even a bit more than ask 😉. My right shoulder hurted and an echo showd fluid. No Pred can take that away. More knowledgable people in this forum come with more suggestions assumibly. In the meanwhile, keep hope, Aletta
I can only sympathise with you. I have had PMR since Jan 15 and am now down to almost 2mg. I have had pain in my right groin and hip in recent weeks. Previously, before my left hip replacement last November, this happened on my left side but disappeared after the hip operation. Oh! the complexities of PMR! Like you I want to get on with life but I too still get tired but have learned to pace myself over the years. Caring for my husband has added to the problems.
Thank you for your super fast replies. I was at the cinema yesterday afternoon, on rising my knee hurt so much I couldn't straighten it. I waited a while for things to subside, not pleasant. See the physio Monday, see what she has to say. I had to make that classic Andy Murray walk back home.
Great site, you have helped me over the past years.
I have myofascial pain syndrome - and when it gets bad it always makes one side of my body more uncomfortable than the other and it can be joints that hurt - an indirect result of spasmed muscles.
But I have had a sore bit on the inside of my left knee for a month or two - no idea where it is from! It has been a bit better the last couple of weeks so hope it stays that way! It isn't even the truly dodgy knee (old ski accident) although it is the knee I completely tore the inner collateral ligament 6 years ago but it healed amazingly and has been fine since.
Thank you PMRpro. I've always followed your responses. Myofascial pain seems to fit, like you inside right knee remains sore. Neck, arm,knee and big toe all right sided. I consider myself a fit 67 year old, playing all sports through my younger years, martial arts latterly, also I am a keen hill walker, all restricted by current condition. Hey Ho.. Just need to adjust brain to body restrictions.
It could also be osteo arthritis. I used to be a trustee of an arthritis charity and they reckoned forty nine out of fifty of us over 50, would have some form of arthritis at some point.
I have been wondering if an "after effect" of PMR, as one gets down to low or no prednisone, is to be left with very tender tendons, ligaments, and/or fascia that are more susceptible to tears, strains and injury. And which get inflamed easily and take quite a bit longer than normal to heal. Thus, depending on the source of the strain, it might be possible to injure one side over the other.
Thank you Rosedail. Following a shower I stretch hips knees with a leg cross movement. When the knee stiffens I feel the tightness at the back of the knee. Like others I have had the calf cramps etc.. I do go about my tasks without restriction sometimes. Points to keep in mind when I see the physio.
That's interesting Rosedail. I pulled my Achilles heel six weeks ago but don't really know how I did it. Maybe more walking and stairs than I normally do as I was travelling by air to Edinburgh. It certainly curtailed my activities while I was there.
Also the security people at Southampton airport were really unpleasant to me and other older passengers which was not a good start to my short break away from caring for my other half. No doubt doing their jobsworth! I almost feel I don't want to fly from there again if I have to go through that horrible experience.
However my heel is almost better now, thank goodness.
I think that for some people that is very probably true - pred doesn't do ligaments a lot of good.
OTOH - after a few years on pred I tore my lateral knee ligament right royally. 4 weeks in a brace and it was fully healed - much to the orthopaedic specialist's surprise.
Sally, very interesting post of yours. It reminds me that, despite doing pretty well on a fast track reduction of Pred' (from 15mg initially when diagnosed early June, to 7.5mg now), I need to watch for (perhaps "expect") some hiccups down the road.
Like you I have led a very active sporting life (on top of a very high stress business life with some interesting family aspects to boot) and am struggling with being reduced to occasional 9 holes of golf, housework and gardening, yet being hit by waves of exhaustion. This PMR seems to wreak so much havoc with so many peoples lives that I am astounded more is not known about the cause and cure. Maybe time to have a "raise PMR awareness" hobble through London (ending up at a pub on the river).
This forum is a great place to chat now and then. You are not alone in all this . . . as I found out. Take care eh.
It may make a mess of people's lives - but far less than many other rheumatic diseases and it doesn't kill or even maim permanently. For 75% of patients it has gone into remission in about 5 or 6 years.
But little is known about ANY autoimmune disorder in terms of cause and cure - so believe me, in that sense there is an awful lot of research going on, just it isn't specifically for PMR.
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