Help! Should I start high dose pred for GCA?
Posted , 6 users are following.
Hello all especially the usual helpful lot. I only seem to come on here when I need advice - sorry!
I have had jaw aching and painful to open wide for 2 days. Just on left side. No headache except I did wake up this morning with both eyes aching around the rims. No other symptoms.
I've just re-watched the Youtube of Prof Dasgupta talking about the symptoms and how one problem is patients themselves not referring themselves in time and how some people don't even recognise jaw pain as a red flag symptom.
The question is, should I get myself to A&E (which seems to me to be over the top ) and start 60mg Pred right away???
I keep thinking that it's probably something simple - but should I be taking action?? I don't want to go blind.
Do you always have systematic symptoms as well like fever?
Many thanks as usual
Beev
0 likes, 98 replies
noninoni beev
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Unfortunately later on the same forum we had a loonie start posting rediculous advice every day. The loonie just monopolized the site. I complained they should block her. But they didn't. So I quit. Then they wanted me to be the moderator! Well, I went on to other things and refused. So this is just to note that sometimes these posts can be very important. And I appreciate the good monitor as we have on this site.. So thank you Eileen, for all your good work.
linda83143l noninoni
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linda83143l beev
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EileenH beev
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I doubt 111 is of any use - no clinicians there, just teenagers with a script. if you don't have the right ticks, you don't count. Except they send out an ambo when it isn't needed but struggle when it would be right. NHS Direct is defunct - they had medical staff to hand so why it was ditched is beyond me!
Is it far to Yeovil? If the symptoms get any worse you could cover base by taking 30 or 40mg, the very high doses are recommended if you have visual symptoms. If they go with that then it would be fairly suspicious I think.
You do usually have systemic symptoms, yes, but - as per usual with GCA - not always and the headache also only presents in way under half of cases. Is the jaw ache when eating, going away when you stop? Anything else?
Linda - since beev is on a very low dose of pred, if she took 40mg for a few days she wouldn't have to wean herself off very slowly, taking a high dose for a few days is very different from taking it for a month and is preferable in any case to risking your vision.
Sorry I wasn't around earlier - too much sport on TV from the US so late in the day!
hope it is sorting itself out - if not, wander over to Yeovil tomorrow morning - if the chuck you out I'm sure there will be a nice cafe somewhere???????
Eileen
beev
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Sorry - just read your reply as our son suddenly turned up for a meal at 9pm on his way from a wedding in Torquay to Richmond!
The jaw is aching all the time and is worse when I yawn and to some extent when I eat. It's not a bad pain - just low level. Sometimes it feels like the whole of that side of my face is aching slightly. No other symptoms. I'm wondering if it is easing a bit. But it's up and down I think.
So you think it's ok to monitor a bit? I wish I was near Southend as I don't have much faith that Yeovil will be up to date with fast action on GCA!
Will take 40mg if it gets worse and go to hospital and insist on a biopsy.
Beev
EileenH beev
Posted
There are a load of other conditions that cause jaw pain and a good place to start is your dentist or possibly a physio to examine how tense your shoulder/back muscles are. Two and a half years ago I had symptoms that resembled PMR plus severe pain into my head and neck - all due to a wisdom tooth that was affecting my bite and the back muscles were desperately trying to accommodate it. After several months of treatment on the back, the neck and head pain got really bad - and I asked a dentist (one in the UK had refused to touch it before because he reckoned it would cause more trouble than it was worth). The wisdom tooth was removed - and the pain has improved steadily all summer.
It isn't ALWAYS GCA.
beev EileenH
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It has played up in the night and have woken this morning with continuous ache all down that side of the face from temple down. It gets worse after moving my jaw even a little bit. Made it worse to lie on it too. I remember it started Thursday night being uncomfortable to lie on.
Should I go to a and e this morning?
Or Bristol?
Or GP or dentist tomorrow?
I think the pain centres in joint in front of my ear .
Beev
EileenH beev
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Here's some reading:
https://patient.info/health/temporomandibular-joint-disorders
EileenH
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The reason I say go to an A&E is that really it does need consideration of GCA - but I honestly do doubt that it is but I'm not a doctor and I can't see you.
You will see that both articles mention tooth grinding/jaw clenching and prescence of arthritis are contributory factor, and that they mention myofascial pain syndrome - that is often found alongside PMR.
MrsO-UK_Surrey EileenH
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I often think those of us with PMR are a little bit luckier than those who've never heard of it and who suddenly produce head/eye problems - at least whilst suffering from PMR we become aware of GCA and the signs to look out for.
EileenH
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If they dismiss you at A&E as having TMJ problems concentrate on finding a good physio/massage therapist - or even better, a Bowen therapist, to get the spasmed muscles that are probably the root of the problem sorted out.
beev EileenH
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Will let you know what happens. If they send me away do you think my dentist or GP is next port of call tomorrow?
i agree I have had a lot of stress over the last few years but haven't been aware of it recently.
Thanks
Beev
EileenH beev
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I would discuss it with a dentist to be honest - do you have a good one? And look for a Bowen therapist locally. Honestly - you would be amazed at the results they can achieve and I am SO relieved to have finally found an affordable one here.
beev EileenH
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About to go to a and e in Yeovil now.
Beev
EileenH beev
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beev
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It s a rheumatologist isn't it? It wouldn't be right just to increase my pred for the sake of it, would it?
If they refer me shall I ask for Bristol?
Beev
EileenH beev
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beev EileenH
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Beev
EileenH beev
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EileenH beev
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But the triage nurse was probably just warning you you might be given a big dose of pred in the meantime - it will be up to a doctor to make that decision. Since this A&E is obviously aware of what it could be then I'm sure so will the doctor. As I say, pred is used for TMJ too.
beev EileenH
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Beev
EileenH beev
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How would you feel if they did a biopsy and it was negative? Then it is a question for them of do they think the symptoms are most likely GCA - in which case they will still use pred - or do they take the biopsy as gospel. I doubt the ultrasound scan is available 24/7. There will only be a limited number of people who have been trained to do it. Possibly it is also available in Bristol.
And, again, if it is a TMJ problem they will still probably use pred. Or there are other things that cause pain there that pred won't do anything for.
tina-uk_cwall beev
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beev EileenH
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Beev😐
EileenH beev
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Discuss your fears with the doctor - they will understand any patient who has been on pred before being unhappy about being put back on it. They aren't heartless you know.
MrsO-UK_Surrey beev
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As Eileen has already mentioned, if they do decide to play safe and treat you with a 40mg dose of steroids, even if it does turn out not to be GCA, you will still be able to reduce back to your present dose over the next few weeks. Hopefully in the meantime, you will get to the root of whatever is causing your pain.
beev EileenH
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1. Pain in jaw does not affect temporal artery so doesn't result in blindness.
2. The pain would not be when you are moving your jaw but when it is stationary.
3. Has done plasma viscosity test.
Am waiting for result.
I told him that the above statements are the opposite to what Prof Dasgupta said. He insisted these are his guidelines!
What do you think about that then? And is the plasma viscosity the valid test??
Beev
EileenH beev
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Dear god - sorry beev!
Since it is "jaw claudication" - ask him what he understands by claudication pain for a start. This is the definition for your advance erudition:
"claudication
ˌklɔːdɪˈkeɪʃ(ə)n/
noun
MEDICINElimping.
a condition in which cramping pain in the leg is induced by exercise, typically caused by obstruction of the arteries.
noun: intermittent claudication; plural noun: intermittent claudications"
No one has said that the jaw pain "affects" the temporal artery - it is merely an indication that the inflammation is affecting cranial arteries. Neither, actually, it is the temporal artery being affected that causes the blindness. "The anterior optic nerve is supplied by the short posterior ciliary artery and choroidal circulation, while the retrobulbar optic nerve is supplied intraorbitally by a pial plexus, which arises from the ophthalmic artery, internal carotid artery, anterior cerebral artery, and anterior communicating arteries." But we won't be too picky about his knowledge of anatomy ;-) - the presence of giant cells in the temporal artery is a confirmation of GCA and that it is intracranial...
What grade is he? Say you would like to speak to a consultant rheumatologist or ophthalmologist (which is preferable I think). Good luck.
I shall go for a short walk to clear my mind after that.
tina-uk_cwall beev
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beev
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beev
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Beev
beev EileenH
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Beev
EileenH beev
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I also posted a correction to his other comments. What a prat.
PV is an alternative more modern version of ESR.
What stage are you at? Is it worth me writing out what I put before?
erika59785 EileenH
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I have had at least 3 occurences where I had jar pain mostly to the left side in recent years. Once the dentist worked on my teeth for a longer period of time which caused stress, and I assumed it was because of it. NO headache or other symptoms.....so I assumed TMJ --- I could not bite well on the side. It was not comfortable for about 2-3 days and then it went away.
I am glad to learn that Prednisone helps for this type of pain, too.
My Rheumatologist told me to watch out for strong headaches close to the temples AND jar pain.....so these would be signs of having GCA, and he did say when this would occure, I would need 60 mg of Prednisone immediately.
You have been kind to guide Beev. One never knows....it's best to be on the cautious side.
beev EileenH
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So I am none the wiser.
Advice please?
Beev
EileenH beev
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MrsO-UK_Surrey beev
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beev EileenH
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The first doctor went off duty and left the other to give me results etc.He left a message for me to have 60mg pred if bloods elevated. 2nd doctor said I would present much worse and in more pain if GCA and that lots of other things were much more likely and would also cause my ESR to go up a bit. He said it's best to see the doctor who knows me. Trouble is, my doctor is part-time and not in on a Monday.
I have only a slight ache which comes and goes now. Will go see GP tomorrow and if possible dentist too.
I have had a complete waste of time in that place and faced total ignorance about GCA.
There was no pain in temple when he pressed hard and no tenderness on scalp etc so I think GCA is unlikely.
What do you both think?
Beev
beev MrsO-UK_Surrey
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If this continues, I am inclined to go all the way to Southend. They do ultrasound there too which shows halo effect in GCA.
Beev
EileenH beev
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When I had double vision that was enough for me to go to the A&E here in Italy they almost immediately apologised there wasn't a rheumy to hand - he was up the road in the satellite hospital doing clinics, would I come back tomorrow. When I saw him the next day he told me to go back to 15mg/day and keep an eye on the symptoms. He justified that with the fact I wasn't demonstrating any other visual symptoms and was confident 15mg would do the trick. His line was that we often do have GCA that doesn't get to the stage of affecting the arteries that actually supply the optic nerve - the temporal artery is a LONG way from that, it is just convenient to biopsy as it is outside the skull - the important ones are inside and obviously difficult to get at. Once the swelling gets beyond there you do start to get real visual symptoms and if that happens - head for a good optician fast and beg for a retinal examination. Apart from anything else, there are other causes of visual symptoms and optic nerve ischaemia besides GCA and expert care is needed.
The ESR is still within the accepted range of being normal - and you have achieved something today, even if it doesn't feel like it. You have a blood reading for the GP which would take a bit to get after you see a doctor tomorrow. The reading isn't an absolute value - it will be x [u]+[/u] a bit, if you see what I mean. The 20 reading could have been 23, the 27 could have been 24, and probably they weren't done in the same lab, and that also makes a difference. You need another later in the week to see if there is a trend.
Did they examine you for TMJ problems? That has typical signs and symptoms too - described on the page on this site I gave you the link for and also on the NHS page about it. One is a clicking feeling.
I don't think it was total ignorance, in fairness. The doctor did say to take 60mg pred if the ESR was raised - and to be honest I doubt even Dasgupta would have said much different. It is very easy to say this is/isn't GCA - but 60mg pred is a lot to give someone who doesn't need it because they have something that could be one of a set of several problems. You really weren't a "typical" patient and, as I say, Dasgupta is fairly conventional in his thinking. If you did get visual symptoms, more conventional GCA symptoms like headache and went back to A&E I am pretty sure they would give you pred then.
Have a good night's sleep and proceed with the search for an answer in the morning.
MrsO-UK_Surrey beev
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It's frustrating when you have opposing opinions from different doctors, plus incorrect comments from one - I shouldn't be surprised, I saw 3 doctors over as many weeks before GCA was diagnosed.....and I had all the classic symptoms including head pain and jaw claudication.
I think your dentist should be the next port of call along with a GP tomorrow and, if the pain continues, perhaps the nurse's suggestion of an appointment with a neurologist is not such a bad idea.
beev MrsO-UK_Surrey
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I'm going to try to relax about it now - I know that one of my problems is that I stress too much and that usually makes things worse.
I have booked an appointment online with my GP for Tuesday as she is not on tomorrow and I would rather see her.
Tomorrow early I will try to get an appointment with my dentist.
I have the info on TMJ and it is possible that I've knocked my face without registering it or that I've been tooth grinding. I expect the dentist will take an xray so that will help rule things out at least.
I really feel I would be a lot more uncomfortable one way or another if I had GCA.
It is so wrong that you get different standards of treatment in this country depending on where you live. Apart from the plonker saying the opposite to Dasgupta re jaw pain, I was kept waiting 2 hours before I saw a doctor - several who came after me who didn't look ill went in before me. In Southend where Dasgupta is, they have a fast track for GCA symptoms much like the practice for stroke symptoms everywhere.
After all, it is a stroke in the eye.
Thanks for your help and to Eileen and several others
I will let you know what happens!
Do you think a glass of wine would help??!
Beev xx
EileenH beev
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YES!!!!!!!!!!!!!!!!!
MrsO-UK_Surrey beev
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beev EileenH
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beev MrsO-UK_Surrey
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EileenH beev
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By the way - did your migraines improve while you were on pred? Quite a few people have noted that.
beev EileenH
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Beev
MrsO-UK_Surrey beev
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beev MrsO-UK_Surrey
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MrsO-UK_Surrey beev
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