I already have GCA which I have posted about on this site ,recently however my mobility and pain in all the usual places has left me unable to do even the simplest of tasks..Is it usual to get PMR after GCA.. I am just starting to reduce using the plan posted here I was on 10mg trying to get to 9 with the approval of my Rheumy.
I also saw the article in the Daily Mail and am glad they are now publishing the symtoms. of an illness virtually e unknown to the vast majority of people
PMR symptoms are one of the symptoms listed as possible for GCA. Sometimes patients develop symptoms of PMR first and then it apparently "goes on" to turn into GCA - or maybe that patient had GCA but simply showed evidence of PMR first. Other people just have what you could call "pure" GCA signs and symptoms and never have muscle problems. It all depends on which arteries are affected by the inflammation. You are at a point where many PMR patients have trouble reducing any further it is true but how long have you been on pred? Depending on what sort of scheme your rheumatologist uses for his reductions you could be down to 10mg in a year or so if the GCA doesn't flare. Few patients with PMR can do that, PMR has a nasty habit of hanging around for at least 2 years, but only a quarter come into that bracket. Half need pred for 4 to 6 years - and a very unlucky quarter need pred for even longer than that. I have basically PMR but almost certainly some large vessel involvement so that makes it more GCA. And mine started 10 years ago, I've been on pred for 5 years.
Yes - the DM good publicity but it would have been so nice if they had got the age group more accurate. On that basis I still would be being told there was nothing wrong - like many others I was in my early 50s when it started. The lady whose case was described tried to no avail to get some bits done differently - that's journalism unfortunately. There have been 3 (?) such articles in the DM now - hope the GPs were reading it though!
Been through GCA with one eye now and got to Club Zero, i.e. no more preds. A few pains along the way, but 2 years later, just old age to contend with! Good luck with the plan and dont rush it.
Tweetiepie, no it isn't exactly "usual" to get PMR after GCA. Whilst some patients will experience PMR on its own, others can experience GCA on its own, whilst a few of us can experience both.
I had undiagnosed therefore untreated PMR, spontaneously recovering within just under a year. However, at the end of that year I developed a whole host of other symptoms and GCA was diagnosed followed by returning symptoms of the previous year leading to a diagnosis of PMR.
After a lengthy period on high doses of steroids for GCA, it is also possible to experience steroid-induced muscle pain. Are you someone whose blood test markers increase with inflammation? If so, then repeat tests might provide an answer for you.
Like PMRpro, I, too, hope that some GPs may have noticed the article on PMR/GCA in yesterday's Daily Mail - perhaps there just might be a doctor 'looking in' who will let us know!
You may have had it all along but the steroids were keeping the pain and stiffness at bay until you reduced under 10 mg.
I agree with honeyadams, went down with GCA then months later when I reduced my steroids down to 12 mg the PMR crept up on me.
Started with odd tingling feelings in my legs and progressed to nasty pains in hips, back, legs and knees together with utter exhaustion and sweating.
My conclusion was that I had PMR all the time but steroids suppressed it until I got below the recommended 15mg dose.
Incidently in my case I needed a higher dose than that and still having flares 18 months on.
It's tough to figure out. I'm sorry that you are going through this. I have GCA and PMR. I have read articles which give the percentages of developing one after you have the other. I'll find them for you. But as I recall if you have GCA your chances of getting PMR are higher than the other way around. I had undiagnosed GCA. Undiagnosed because I am stupid and kept going to an ENT doctor. During that time I clearly got the PMR in my pelvic girdle. Since I had no Prednisone, the difference to me (between the 2 diseases) was stark. I absolutely knew with the PMR that I had to find a Rheumatologist. I didn't know what was going on with the GCA. Interestingly the ENT doctor gave me 4 mg Prednisolone (I was having surgery on my sinuses.) The PMR went away in 24 hours. This is a factor used in diagnosing PMR. It tends to go away rapidly with Prednisone (at least at first). Since then I have had GCA flares (eyes, fever, flu-like symptoms), and PMR flares (pelvic girdle extreme "stiffness"). The GCA eye doctor was "hoping" that I would wind up with PMR and be maintained on a relatively low dose of Prednisone. He could them stop seeing me and the Rheumatologist would take over, alone, without him. But my GCA eye problems flared as we reduced Prednisone. So when you have both, either can flare. I also think that most of the time both diseases simmer in me. I usually have (but not every minute of every day) bi-lateral pain in my butt and sometimes upper thighs but in the back of my leg. I believe that this is PMR. I believe that the on again off again pains in the arteries in my face and head are GCA. Hope that this helps.
clevelandclinicmeded.com/me...
“PMR coexists in 40% of patients with GCA. Similarly, 10% of PMR patients develop GCA at some point during their disease course.”
Tweetiepie
I had GCA and three years down the line had pains and aches. No it was not PMR, it was Vitamin D defiency which presents exactly like PMR which is why it is an exclusion test before you are diagnosed with PMR. If you want to read up on Vit D follow this link
pmr-gca-northeast.org.uk/as...
The sequel is in a later edition. But in case you cannot find it. After the second blood test, it was still not high enough so another dose of 20,000 units per day for 5 days.
Since then I take the recommended 1000 units per day, maintenance dose. Bought OTC from Boots, 90 tablets for around a fiver. No problems at all.
Suggest you get your levels checked.
Wondering if I have PMR or not
No wonder I have PMR.
Have I really got PMR?
I think I have PMR now to go with GCA
Could I have fibromyalgia as well as PMR/GCA
