Hi, a call out to those experts out there! I have a couple of questions that have been niggling me.
1. If you have PMR and GCA, can you get a flare in one but not the other?
2. The VA and other leaflets and websites tell you how to deal with stiffness (page 15 here, for example) versusarthritis.org/media/2... but if you're on pred, surely you don't get any stiffness unless you're having a flare? My stiffness went completely within 24 hours of starting pred, and as I'm tapering, I get a tiny bit in the first week or two of a new dose but nothing that warrants special exercises etc. If it got that bad, I'd up my dose!
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Broseley
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For what it's worth, I agree with you that pred should be dealing with any sensation of stiffness. In fact from early days, when PMR agony was still fresh in my mind, I disagreed that PMR causes "stiffness" as such - it restricts movement because of pain. It's not stiffness in the same way as osteoarthritis can restrict range of motion if the joint is damaged. My fingers, for example, are stiff because the joints on many of them are now enlarged by OA. My knees can feel stiff when I start moving. But PMR is well controlled; I have no trouble getting out of bed, up from a chair, climbing stairs, etc., all of which were very difficult when I had untreated PMR.
Depends on the person really - I have stiffness but it is due to other things rather than directly the PMR. The stiffness I had originally due to PMR eased immediately with pred - like within 6 hours and hasn't returned in the same way.
I don't regard PMR and GCA as two different things - if you have GCA with PMR symptoms as symptoms of your GCA, if the symptoms worsen it is the GCA flaring. If that makes sense - I know what I mean!
I have loads of stiffnesses all the time - it is a constant battle. But I don't think they are PMR of GCA directly - not necessarily bilateral, can raise my arms albeit stiffly, isn't really worse in the morning, etc. They seem to get worse with lowering doses of pred, so I think it is the result of struggling adrenals and the effect on my tendons of all that pred I've swallowed.
That's interesting. I didn't know pred can affect your tendons. I had problems with tendons way before PMR. Now I find my tennis elbow is giving me gip, but so far my ankles, knees and hip are OK .
I originally had it in my right elbow caused by over extending while playing swingball! It was very painful so I had a cortisone injection and it's been fine since, just the odd twinge, and I can't play swingball anymore! However it's now my left elbow, but it's only mild discomfort when I lie in bed on my left side.
Yes,, I also have had issues with tendons since being diagnosed with PMR. My right wrist is really painful despite cortisone injections. Rheumy calls it synovial tendonitis and it apparently can happen with PMR?
I guess it could have been the prelude to me getting PMR as I had had issues with tendonitis years before PMR. I still think the Covid jab triggered it - maybe the last straw! I once developed shingles as a result of having a sauna. I've never had another one - but I guess that could also have been 'bubbling under the surface'.
Question 1 , answer Yes , in the sense that it's a certain part of the body effected by the PMR , or GCA or both that can be flaring . Question 2 , there are all different causes of stiffness not just inflammation so even if your PMR is well controlled and not the cause of stiffness , other joint , muscle , bone , tendon or neurological causes can cause it. Other causes can also bring a flare in stiffness or inflammation too, like delayed onset muscle soreness, if you have done too much activity , injuries , infection , a wound , old repetitive complaints and reactive arthritis. Although inflammatory you would not necessarily increase the Pred to get rid of it or get the instant relief if you did.
That's why it's important to think if why the stiffness has happened , what you've been doing , if it feels like PMR or some other pain you had before that could just improve with paracetamol and rest before getting out the steroid box.
If you have ongoing , or have just begun to, get osteoarthritis or other arthritic joint problems you still need to begin , or continue , to use the exercises that benefit them , and other exercises to maintain your muscle and joint strength in a well paced way . Otherwise, the joints can become more stiff, or sometimes loose , which forces you to change your range of movement and that eventually causes restricted mobility , tension and stiffness too.
Thanks, though I don't think the VA leaflet makes that clear. It's amazing how quickly the human brain forgets though. I had forgotten that my PMR stiffness was also so painful and that's what made it so difficult to move in the morning especially. Stiffness after exertion soon goes, almost immediately, once you start moving. And there's no pain with it.
I don't have any arthritis, unless it's developed since PMR started 20 or so months ago. I had MRIs and XRays. But I am starting to get some stiffness again now I'm on a lower dose, though not yet painful except in my tennis elbow. Pred was like a miracle cure for me because it got rid of my PMR and GCA pain but also my tendonitis in my knees, ankles, hip and elbow.
I'd been having tendonitis for about 8 years before PMR though. It rotated around my body so luckily not all joints were affected at the same time, but each bout would last around 6 months then disappear. I'd be fine for a few months then it would kick off somewhere else. Not helped by not being allowed to use NSAIDS tablets or gel.
Are you sure it is PMR you have and not palindromic rheumatism? What you describe would be quite typical. Theziggy was dx'd with PMR but it is actually palindromic rheumatism - same treatment, pred, but a different disorder.
Interesting. I've Googled it and the limited info out there certainly matches my symptoms, except it says that attacks last a few hours to a few days, whereas mine lasted several months. However I then developed bilateral stiffness which slowly got worse - then GCA due to head and jaw symptoms. Maybe I've got both? Negative RF though.
It depends where you look, sometimes they do mention weeks and where does weeks turn into months? - and often PR later develops into a more identifiable inflammatory arthritis. RF is not awfully helpful - sero-negative versions of most things occur. I also suspect that there is an overlap between PMR/GCA, PR and other forms of inflammatory arthritis but many doctors are locked in the past and the definition of such disorders.
I view autoimmune disease as a not-so-lucky bag and you get dealt a selection of symptoms. In historical terms your label depended on the diagnosis that matched most ticks of your box! That is being recognised with the diagnoses of MCTD and UCTD (mixed and undifferentiated connective tissue disease. What you have doesn't fit anything in particular but has a bit of everything in general.
It would be helpful to know what it is, though, just for peace of mind. Various GPs have been unable to explain it over the years. I'm grateful I went on to get PMR and GCA because it meant I get pred, which has also treated my tendonitis issues. That's why I felt soooo good when I started taking pred then! I'm just a bit worried that it'll come back as I wean off. My left elbow is giving me a bit of trouble already (on 5mg), especially in bed at night.
As many others on here have said in the past, it isn't a race. You may find you can't taper down to zero, but will need to maintain a low dose of Pred all the time in order to keep the pain and stiffness at bay, so you need to keep that in mind when thinking about tapering.
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