Merry Xmas and Happy New Year to everyone here 
I've had Polymyalgia for a year and a half. I started on 20mg of Pred and have reduced to 2mg. The only time I experience shoulder pain now is when I taper down too quickly. I tried 1mg but the pain came back. I tried to 'put up with it for 3 weeks but ended up back on 2mg which seems to work.
But for the last two evenings I've had throbbing, aching jaw pain on one side. I also have a slight headache during the pain. It doesn't hurt more when I chew. My eye sight hasn't changed, but I have had a blurry eye for months which specialists can't find the reason for. My scalp isn't tender.
Taking pain killers didn't even touch the pain of my jaw. I feel the pain in my gums but it's not dental because after throbbing in my bottom gum it changed to the top gum.
The symptoms don't seem to fit GCA?
The symptoms you experience if GCA is developing can be many and varied. The typically quoted headache, scalp pain and jaw claudication are probably the ones at the end of the spectrum when the temporal artery is finally affected enough to reduce the blood flow enough to cause them. Other arteries can be affected and they cause other symptoms - like sore biceps when you use them repeatedly, even holding your arm in one position holding a telephone or typing for a long time. I think I have said before I also have had a blurry patch in the middle of the visual field of my left eye for years now - it definitely improves at a higher steroid dose but noone can see anything that causes it or evidence of it on any tests for visual field. Until this summer I had also had a massive floater for several years - I realised the other day that it has disappeared since I had a course of higher dose steroids earlier this year although the blurry bit is still slightly there. Coincidence?
You're right, it doesn't fit typical GCA - but if it doesn't improve very soon I would be either at the doctor or take a trip to your emergency department - and definitely if it gets worse. Were your ESR and CRP high/raised with the PMR? How often are they checked? They should be looked at every so often even at the low dose in case the inflammation is starting to flare up at a very low level. It can take a while to increase to a level to cause symptoms.
Eileen
Wouldn't it be useful if symptoms would just stay still?. I had really severe pain just above and behind left ear for some months. Went to surgery and the took ages discussing it with me and each other (the two doctors one very young called for second opinion) Because there was no claudication ( new word for me at the time and explained by Eileen ) it was decided I needn't worry, just be alert. It came and went for some months but have not had it for a long time now. So what was it? Did it have any significance? Why did it go away?
No wonder we don't always get qick diagnoses. Give me a nice cut and dried broken bone. No, not really. Broke third metatarsal and it was agony.
Broken metatarsal? It'll have been that boot again :D :wink:
Thank you for your fast replies Eileen and Betty. It's so strange the painful jaw only happens in the evening! Today my jaw felt tender but not painful. Tonight it's aching a little. I do find when I rest my tongue on the floor of my mouth and keeping my teeth apart it seems to ease the pain.
TMJ? Although the symptoms don't fully fit.
I've increased the Pred to 6mg (I only have 1mg tablets) today .. just in case. I wonder if taking Pred can 'mask' the symptoms of GCA?
Yes I often say I wish my disease was simple! It's frustrating having both Fibro and Poly. You always wonder if this new ache/pain/symptom is connected or some new thing!
If it gets worse or doesn't go away I'll see my GP. I haven't had my levels checked for over a year. I thought I was coming to the end of this Poly 'adventure'.
:roll:
Taking pred at a highish dose would keep the inflammation down but the PMR doses even at the beginning are really too low to really have much effect if it is GCA that is going on. Having said that when I had this strange flare that might have suggested GCA in the summer 15mg was what the rheumy said and it did improve. There are doctors who will try to tell you that you cannot \"get\" GCA if you are on pred - it isn't true! If the autoimmune activity is such that the inflammation gets high enough you can end up with the symptoms - just as if you reduce your pred too far the symptoms will recurr.
The usual starting dose to deal with GCA is 40mg if the symptoms are not severe - 60mg if there are any visual symptoms at all and they try even higher and i.v. if there is any visual loss. So the low dose you are on at the moment is very low by comparison. However - there are other things that cause jaw pain and it is only on one side and not typical so it may well be one of the other things.
I know what you mean about the \"what is it from this time\" feeling! You don't know is it the PMR, the pred or something else!! Pred gets a lots of blame for things it isn't responsible for I suspect. But to have got to where you are after 18 months is pretty good - but don't rush, patients who are off pred in under 2 years are more likely to have a recurrence and that is the last thing you want :shock: :wink:
Eileen
Could it be that you are a jaw clencher and that is what is causing the ache? Tension anywhere does have a very strong effect on pain levels, I find.
I know this sounds too simple to be true but the abdominal breathing and exhaling slowly through the mouth that was recommended by my sister's yoga teacher has really helped me. It cannot do any harm which is more than you can say for some of the wackier things you read. I do it in bed before getting up and after I turn out the light at night. I cannot honestly say it is a cure for insomnia because I'm a good sleeper but I do seem to drop off even faster these days.