Help! Should I start high dose pred for GCA?

I saw the response you received and,I do totally agree with you. Xx

If the pain is all the time I don't think anyone would take it as a sign of GCA - even Southend! You are very close to Bristol which has an excellent rheumatology department that has done studies on diagnosing and managing PMR/GCA - the Quick and Kirwan paper I keep referring to originates from there. 

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.

Eileen,Mrs O

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

Go to an A&E - depends where your husband is willing to take you I suppose! The most likely problem is one with the tempromandibular joint but that is something that is a rule-out diagnosis in GCA too.

Here's some reading:

https://patient.info/health/temporomandibular-joint-disorders

 

If you google tempromandibular joint disorders you should also get the NHS advice page which addds a few bits to what is on that page on this site.

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.

Beev, I agree with Eileen - being the weekend, A&E would be my first port of call.  It could be a dental problem, a neuralgia-type problem or something else, BUT GCA needs ruling out and it needs ruling out NOW, especially as you have PMR - whatever it is needs investigating.

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.

 

And of course - since it started at all you have been scaring yourself to death with worry, which will have made you even more tense and your shoulder muscles are probably like boards!!!! ;-)

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.

Thanks Eileen and Mrs. O. Like you I doubt it is GCA but I need to go to the joys of A and E. Probably will see a baby doctor who won't have heard of gca or pmr!!

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

I think if A&E don't advise anything more than painkillers then the GP probably won't advise any more than is in the two bits of reading I suggested. I'd have given you the link for the NHS page but it would disappear until moderated. If you haven't looked at it then it gives several suggestion for relieving the pain of TMJ problems.

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.

I would like a diagnosis of what it is if it isn't gca. Btw, is Bristol still good and up to date? Prof Kirwan has retired.

About to go to a and e in Yeovil now.

Beev

It's a university rheumatology department - Kirwan has only just retired and will have had quite an influence there. Dr Quick has also moved on somewhere else as I know of someone being treated by her. But they will have heard of GCA - unlike what appears to be the status in some local hospitals!

Eileen, the nurse who just saw me said they might have to put my pred up anyway. Is this valid? He also said I might need to see a neurologist.

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

It may be they have a neurologist there and not a rheumy - either are fine for ruling out GCA versus TMJ problems and a neurologist might be better, in almost every other country besides the UK neuros and eye specialists do GCA too. It could be their plan of action for query GCA is to automatically start high dose pred until an expert has seen the patient. If it is a single high dose it is fine, you can stop immediately if the neuro says it isn't GCA but x, y or z. But it means there is little risk to your vision in the meantime.

Surely only a single high dose if neuro or rheumy sees you the next day? Don't they have to do a temporal biopsy to be relatively sure?

Beev

A shortterm course of pred is often used for TMJ too - the pain is also due to inflammation of the joint and surrounding nerves and pred will relieve that. It is just the same as pred being used for asthma or severe chest infections - you take it for a short time and then stop. It is only in chronic problems where the cause of the inflammation is on-going that you have the problems with reducing the dose and having to do it slowly. It's like a dripping tap - as long as it drips your sink might overflow. Replace the damaged washer, stop the drip and there's no problem.

I suppose it depends on what you mean by "relatively sure". The biopsy is only positive in about 40% of cases of GCA - even though the patient has all the signs of GCA. There are all sorts of reasons for the biopsy not to show the cells. Even if you would have to wait only a few days for the biopsy - theatre time, surgeon, whatever, they would still give pred inbetween for safety's sake. 

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.

But it needs biopsy? In Southend they also do ultrasound scan. Wonder about driving there!

Beev

Beev - stop panicking! You haven't had a medical exam yet have you? Discuss it with the doctor. I think you have decided it is GCA, haven't you?

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. 

Beev, luckily I've never experienced what you are going through, and without sounding rude if I did I think like you I would be in a total state of panic, because I'm reading what you are writing and you sound very worried, which so would I be. However, I have read that ultra sound is sometimes used to diagnose GCA and not always a biopsy as Eileen has said that method is not 100% accurate. I have also read that dr's will up pred dosage before any tests have taken place, simply to be on the safe side. Good luck, christina

No, I'm actually thinking it's not gca but that I've started a train of actions by coming here and will now end up with pred high dose unnecessarily! It's not as bad now!

Beev😐

If they think it is TMJ then you will probably be given a short course of pred. Believe me, no doctor is going to give a short or long course of pred unless they think there is a good reason for it. There is something going on or you wouldn't have pain. Some doctors use a local cortisone injection for TMJ, others use oral pred which avoids any chance of catching a nerve with the injection which is always a problem with any injection of any sort that goes below skin level. 

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.

Beev, really there isn't any choice but to seek immediate expert advice when you are suffering from PMR and have GCA-type symptoms.  It's either that or take the risk of losing partial or total vision if it is GCA.  I know which chice I would prefer.

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.  

Well, have just seen doctor who told me that

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

PV is similar to ESR, a modern version if you like.

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.

Hi beev, you are quite clearly connected to the Internet somehow, log on to one of the sites that describe the systems of GCA and insist he/she reads them!!!! Give your laptop, iPad, or whatever you have to the nurse and say you want it returned by the Dr. Even if you don't have GCA it's an outrage that these people do not even know the basics. Christina oh and be firm but polite.

Can't read your reply Eileen.

Can't read your replies Eileen.

Beev

Can't read your replies

Beev

The site went AWOL as I posted a reply - hence the 3 and I assume the definition of claudication I put in for you (it by definition is pain arising from movement that goes away at rest, as my husband pointed out, otherwise it would be "resting pain", it is his field!) triggered the censorship. I couldn't see that it hadn't been allowed, only the dreaded error... Sorry.

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?

 

I am following this discussion with interest about a possible GCA problem.

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.

Turns out they have done esr. Up to 27. Was 20 3 weeks ago. 1st doctor said to go up to 60 pred but doctor who gave me the results said he disagreed as esr would go up for any inflammation and with gca usually lot higher. Said to go to GP tomorrow.

So I am none the wiser.

Advice please?

Beev

It all has to start low! Has the first doctor disappeared again?

 

27 isn't bad.  However, have they done a CRP?  CRP is almost always raised in GCA.

Eileen, Mrs O

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

 

No CRP, just ESR.

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

Personally, I do think it is very unlikely to be GCA. I don't entirely agree with the second doctor - but he is right about other things being more likely and that they would probably affect the ESR.

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. 

Beev, well yes both Eileen and I said at the beginning that we felt it was unlikely you had GCA - your symptoms were not at all typical.  BUT, whereas people can have GCA without PMR, when you already have PMR, you are at a higher risk of contracting GCA, so any new pains occurring around the head/face/eyes/jaw/neck in particular must be investigated immediately to rule out GCA/TA and to protect our eyesight. Out of interest, did either of the doctors you saw today examine your eyes by the way?

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.

Thanks Mrs O. Yes the first doctor shone lights in my eyes, tested my peripheral vision and prodded me around my face and head and in the mouth.

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

 

"Do you think a glass of wine would help?"

YES!!!!!!!!!!!!!!!!!

I'm not much into wine but yes I think a glass (or two) of wine will help, plus a great big cuddle with that goldie.........unlike the alcohol, I am into our little 4-legged friends!

Now I am having the visual disturbances I get with migraine. That's not a sign of GCA is it?

yes he does help but he's not very cuddly. I've just told Eileen, am now having visual aura I get with migraine. That's not part of GCA is it??

Not usually, if you are prone to migraine and went to the doctor complaining of aura they would probably leave it at that. GCA is always described as a new sort of pain the patient hasn't experienced before (unless they have had GCA diagnosed previously) together with the other typical symptoms. If these symptoms are different from your normal migraine then that is a different matter.

By the way - did your migraines improve while you were on pred? Quite a few people have noted that.

I'm still on the Pred of course albeit a tiddly dose. I have had fewer migraines I think gradually as I have got older. Don't think it's down to Pred. Possibly after menopause. I get wavy lines across my vision so I can't see. After 10 mins it tends to go away and then I get a headache but not severe. Always associated with stress. It's the vision problem that just got me going after the GCA scare! I suppose it's the stress of the day though if you say you don't get those auras with GCA?

Beev

Oh crikey, beev.  But your words "am now having visual aura I get with migraine" must surely answer your question.  If you commonly suffer from migraine with the same visual aura, then why shouldn't it be another migraine attack - after all you've had enough stress today to bring on a migraine.

Yes - just got me twitchy when I've been worried about loss of sight! it's ok now.  Clearly I haven't had enough wine. Will go play with Barney ! x

That's the spirit (or the wine!), beev - stay positive!