Hello again .. I could do with some advice once more. I'm looking for a rheumatologist for a second opinion. I live just outside Sheffield in the Hope Valley. Diagnosed with pmr in 2022 started on 15mg pred with dramatic response. Had tapered to 5.5mg pred with a few hiccups on the way. Last few weeks been struggling with frequent headaches and strange numb feeling in left jaw. Painless and doesn't hurt when eating. Have a history of migraine which does muddy the water somewhat. Some of the headaches are not my usual migraine and are felt in the left temple. They move around. Saw GP who felt it was a possible red flag for arteritis and sent me to A&E. Bloods and u/s scan all ok. However consultant there still thought arteritis possible and advised increasing pred to 40mg. Said she would contact my rheumatologist.The thing is my rheumatologist at Chesterfield hospital has been telling me for the past year that he doubts I have pmr after all as my bloods are consistently normal and wants me to come off the pred. I saw him 2 days ago after my visit to A&E and he doesn't think it's arteritis and doesn't want me to increase to 40mg. He also said that pmr typically lasts one to two years so he thinks I should be clear of it by now. I hope he's right!
All very confusing. I'm still stuck with the constant headache and don't know if it's a sort of intractable migraine or what. I've increased pred to 15mg this morning off my own bat to see if it has any effect. If not after a week I'll drop back down. I think I need to see a different rheumatologist and maybe also a neurologist.
Any thoughts?
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Alithia
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He also said that pmr typically lasts one to two years so he thinks I should be clear of it by now. I hope he's right!
If he thinks that he’s obviously never read this forum.. it might for 50% of patients… but that leave the others 50%!plus between 7-20% of patients with PMR don’t have raised markers [depending which study you read].
Jaw issue might be TMJ/TMD - have a look at these and see what you think-
"He also said that pmr typically lasts one to two years so he thinks I should be clear of it by now. I hope he's right"
Well he ISN'T and he needs to keep up with what is going on in the world! My bloods were NEVER out of "normal range" even when I couldn't move during a flare - they were raised for me though.
I have no idea what this guy is like at PMR but if I were looking for a private option in your area I think I would risk seeing him - he sounds like my guy here in Italy!! I've never heard a "who I am" video that sounded as if they were really interested in the patient experience before!!! He's obviously from the south and I know 4 doctors from there who are all of the same sort of mindset.
Hi Alithia, I too am in that never ending, is it GCA or ‘something else’. Diagnosed 3 years ago with GCA and steadily reducing pred to 3.5 currently. History of migraines too. Neurologist feels that I no longer have GCA (based on ?) and it has morphed into cervicogenic headaches. (I have cervical spondylosis). Am on sodium valproate (epilem) and have had one GON (nerve block in base of skull). Bloods always normal from the start. Headaches come and go, but currently not too bad and nowhere near as bad as before 🤞🏼. I do get neck/head pain with certain tasks (hoovering). I am kind of accepting now that my neck muscles are weak and causing issues, added to the spondylosis. This is my journey, hope it helps, we are all different and it is definitely worth doing the research iro TMJ etc.
Hi Beth .. thank you so much for taking the time to respond. It's so frustrating when the diagnosis is unclear. I manage to taper pred down to around 5mg but then seem to hit a brick wall. Never sure whether it's a flare or adrenals. Sounds like you've had a time of it with your migraines. I too have problems with my neck (osteoarthritis and a couple of prolapsed discs) which adds to the party. I've been offered topiramate for the migraine but so far have managed with triptans. May have to revisit this. The TMJ angle is definitely worth exploring. My tinnitus has become so bad recently which also fits. Thanks again and I wish you all the best.
I didn't know that. I was thinking in relation to possible TMD. I've upped the pred to 15 mg to see if it makes any difference. And I'm taking paracetamol plus which helps a bit. Laying off the triptans if possible as dont want overuse rebound headache in the mix. Obviously I'm hoping the rheumatologist is right and it isn't gca. Reading other accounts of GCA symptoms they do sound like the headache is more severe than mine. I have no visual symptoms and currently no tenderness over temples. I shall go back to the GP after the weekend. Thanks again for your input. Guess the climate in Italy suits you. I used to live in Greece and still visit regularly as my daughter lives there.
I thought that was what you meant so I threw in the GCA link just in case.
All diseases come in different strengths!! But it is perhaps less likely but not impossible.
I don't live in the Italy everyone thinks of - I am right up in the north in the Dolomites in the ski area. Other way round in our case - my daughters are in the UK.
I forgot to say, I also have tinnitus which started not too long before GCA. I cannot take topiramate as I have asthma so they gave me low dose ‘old fashioned’ epilem for headaches. If you do go down the triptan route, bear in mind that it is not recommended with raised eye pressure. Thanks to the steroids I also have this and it was pure luck that a routine eye appt found it. It has decreased to normal levels with monopost eye drops and hopefully will resolve when I am steroid free🤞🏼. Again, not an expert, just lived experience 😊
You are right. Risks not explained to me - pressures were fine then suddenly they weren’t, no real symptoms except my usual headache. It was luck (an unrelated, inconsequential eye bleed) that got me to my specsaver in between my appts. I don’t understand why eye pressure is not checked more often for us pred users. My pressure in one eye was 34!
It used to be that if you were on pred you qualified for a free annual eye check - then that was withdrawn to the bi-annual check. But it is up to you to go to your optician and request it. Here I have to ask for a hospital appointment - opticians aren't allowed to do it.
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Tapering and struggling 
GCA temporal arteritis 
Temporal Arteritis Or Sinusitis? CT scan and response to Pred. 
PMR or OA?
Yet another question - sorry!!
