Hello ladies, I was diagnosed 2018 with PMR. Never got off pred. I made it down to 5 and stayed there for several years. Last summer, my eyes started bothering me and I was getting headaches. My rheumatologist seemed a little bothered that I didn’t come to her sooner as I could have gone blind. They did ultrasound on my temples which came back negative. She put me on 60 mg Pred to which I’m down to about 9mg now. I’ve never been diagnosed with GCA. I don’t have the scalp pain. Sumatriptan does help the migraines which I’ve been told it won’t help if truly it’s GCA. Sumatriptan works for me.
My question is how do I know it’s GCA or TMJ? My left jaw is tender to touch. And when I sleep on my left side, the left side of my head feels like painful inside. My eyes are always watering. I try using drops as much as I can. I don’t have chewing problems. My rheumatologist wants me to get down to 8mg and not go above that. However, my head feels weird even at 9mg. At 10mg it seems symptoms subside more.
Is it GCA or TMJ?
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lizg0017
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as mentioned… have copied relevant parts from my reply from other thread -
Do you have jaw claudication - that is it hurts [usually both sides] when you chew and then ceases as soon as you stop chewing? Or is it a more constant pain?.. Would say from how you describe it's more likely a TMJ issue..
... and just because you don't have scalp pain doesn't automatically rule out GCA.
Rheumatologist was obviously concerned enough about GCA to put you on such a high dose... and the fact that a slightly higher dose of Pred helps, suggests they may be some GCA or PMR or both lurking.
.. when you say - My doc wants me to get down to 8mg and not go above that. What doctor do you mean? Rheumy or GP? Whichever it is needs to be trying to find out what it is that is causing issues.
and your reply -
I don’t have jaw claudication. It’s just the left side of my jaw and head. And my eyes are bugging me. Watery and sometimes blurred maybe due to watering. So those symptoms all can point to gca but it could be other causes too. It’s my rheumatologist that doesn’t want me to go higher than 8 if I can get to it. Agree, with pmr for so many years, who knows what’s lurking. Thanks so much
Edit .. hopefully will now get more replies from others in similar situation…but do chase up the TMJ possibility -
You don't always get all the listed symptoms - and obviously your rheumy was convinced enough by your symptoms to make a clinical diagnosis of GCA and treat it as such. You use the terms my rheumatologist and my doctor - are they different people? I would be more interested in what your rheumy who made the decision it was GCA thinks than a GP to be honest - GPs often are fixated on reducing pred rather than the dose you really need.
"The potential to confuse these two diagnoses is illustrated by another reported case in the literature where the initial clinical diagnosis of CH had to be revised to GCA after a positive temporal artery biopsy.10 The two conditions cannot be reliably distinguished by their responsiveness to treatment since cluster headache episodes have been shown to respond to steroids9 while sumatriptan has also been shown to be effective in GCA.11 The diagnosis of both these conditions rests almost entirely on clinical grounds, thus reinforcing the importance of a good history to help make the distinction. The relatively rapid tapering of steroids without a return of the original headache raises the possibility that the correct diagnosis in this patient had been that of CH from the outset rather than a case of GCA complicated by CH. "
Unless you can be 100% sure, I think that you have to treat for GCA - but it doesn't mean there isn't something else going on as well. I would get back to your rheumy.
Thank you. I am referring to my rheumatologist when I say doc. Although my rheumatologist seems to be in a hurry to get me off or down to 8 or below and if I can’t she wants me to try biologics. I’ve read some side effects of biologics and it’s a little scary. If I say to my rheumatologist my head hurts, my eyes hurt, and I have jaw tenderness, she’d probably bump me back to higher pred doses. My inflammation labs are within normal range. My rheumatologist said around 10% of people with PMR can have normal inflammation markers and still be in a flare. The information you posted for me does in fact point to being treated for gca. Ugh. Sometimes if felt like I had a metal hat on and it was being twisted tighter and tighter around my temples. Bilateral. Isn’t gca mostly unilateral? Hope my post makes some sense.
Isn’t GCA mostly unilateral… no! And your comment about metal hat and being twisted tighter is very similar to how I described my GCA pre diagnosis - if fact I compared it to a medieval torture face mask… because mine was horizontal up from nape of neck over top of head and down through eyes to front of neck. Very unpleasant indeed.
I'm on Actemra/tocilizumb which is what is used for GCA. Nothing to be scared of there - I have had no problems at all. Obviously some do but they are rare and in general, better than high dose pred. At least she is in the sensible cohort who know you can have PMR.GCA with normal blood markers. And sorry - no, GCA can be bilateral.
Not sure where the concept came from that it is always unilateral - some papers do say it is rare to be bilateral. But it is warned that if vision is lost in one eye, there is a 50/50 chance of total loss of vision in the following couple of weeks. What IS rare is simultaneous bilateral visual loss - but it isn't that uncommon for ine eye to go first and the other later.
This is one of the best summaries I know of - and reading it shows just how diverse and non-specific the symptoms may be.
Thank you! It’s amazing that I’ve had PMR for 7 years and it’s still evolving. And thanks for the encouragement on actemra. I’m feeling more and more that I need a secondary medication to help with my symptoms. I am reading the linked articles you attached in your reply. Hopefully, i can get some resolutions from my rheumatologist.
As someone whom suffered from GCA , and still has Cluster Headaches now I can say the symptoms are virtually identical.Both of them can be unilateral or bilateral.
Sadly, if you have already suffered from severe chronic migraines and cluster headaches it's also possible for the GCA to trigger migraine pain or cluster headaches at the same time , which is something I know I haven't seen people consider .
In those instances , for example , before my GCA was diagnosed I spent a number of months getting some relief from Sumitriptan , because it was treating my cluster headaches pain but it never got rid of what turned out to be GCA pain , the vice like pressure from the top to the sides of my head and jaw. That only improved once I took steroids.
I have Ehlers Danlos Syndrome, which causes very loose joints so I also had TMJs before GCA and I had another condition that developed called Trigeminal Neuralgia.
The pain from these was again a virtual parallel to the GCA pain I had in my jaw. It was the intensity of the pain which differed and the triggers.
Trigeminal Neuralgia and TMJ can also occur for people whom suffer with Cluster Headaches and Fibromyalgia, but they could also develop after a long time on steroids in some cases because of the effect of the medication of the elasticity of the muscle in the jaw.
What I would suggest is that to try to help to get to the bottom of this and to help the Rheumatologist in their assessment you could do with getting two things.
Get assessed for TMJ with your dentist or ask the Rheumatologist to send you to be checked for TMJ to the Muscoskeletal or Orthodontics Department at the hospital.
If you haven't had them already you need jaw x-rays and someone with experience in treating and diagnosing TMJ to rule it out.
Ask the Rheumatologist to organise for you and urgent referral to Neurology to get an EEG and MRI. These tests can help them establish if the pain you are experiencing are caused by cluster headaches , severe migraines , like vascular migraines or the pain is related to neurological issues .
The Neurologist can also compare and discuss your case with your current Rheumatologist and whether it's GCA , Cluster Headaches or both they can create a more cohesive treatment plan that can help you manage both.
If you take Sumitriptan was that prescribed by the GP?
If you have an urgent referral to a Neurologist / Migraine Specialist they can offer you more treatment options which the GP does not generally consider , the treatments themselves may ease your issue and even if you are also being treated with steroids they can help reduce the impact of migraines on your GCA helping you to cope and taper your steroids dose.
You can get Sumitriptan, for example , as a nasal inhalant or injection. These are stronger and more fast acting that oral medication.
If you have Cluster Headaches , you can request any of your doctors to arrange for you to get Supplemental Oxygen Therapy at home , but generally that's easier to organise via the Neurologist. You use oxygen each morning to help prevent CH and during attacks to reduce and treat the CH.
In England , you can also get biologic injections like Ajovy for Chronic Migraines and Neurologists can also organise a vagal stimulation device on the NHS called Gammacore to use daily to prevent autonomic nerve related cluster headaches.
There are also various other combinations of options of medications which help vascular migraines which aren't always offered by the GP.
If you have GCA the Migraine / CH medication won't treat it entirely like steroids do , I say this from experience, but they can treat the added migraines and CH that the GCA can trigger.
The additional Chronic Migraine alongside the GCA can also be the cause of the pain being diffuse and bilateral , at least that's my experience.
If you don't get rid of the head and jaw pain that you have when you are offered far more appropriate tests and help for your Migraines/CH it's more likely that you have active GCA and do require steroids.
So ask for them to get you other checks from other departments because you may just need other specialists to help your rheumatologist to make a final decision at this point. Take care , Bee
wow, awesome suggestions. I wish my doctors could advise like this. Coincidentally , a dental appt this week. I will definitely pursue asking for TMJ testing and imaging. In addition, I have an appt coming up with my gp in a couple weeks. I’m not due to see my rheumatologist for a few months but I know I can always call and speak with department nurses. I do feel better on a little higher pred dose. I’m currently on 9mg. Even at 10, I do a little better. Of course, no one wants me at 10 or more. They’re going to push the biologics. Also, I was unaware of nasal sumatriptan. Bet that’s a kicker! Thanks so much for your response. I love this group. Best Liz.
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