Hello everyone. Can anyone tell me please if this cheek bone pain, deep earache on left side of head plus headache can be to do with pmr? I have very bad tinnitus in both ears, left ear worse, which was why I first visited gp back in April. Diagnosed with pmr july this year. I also had a temporal biopsy (left side) in July for gca which came back negative, but I had been on 40mg pred for 3 weeks prior to it being done. I'm now at 16mg pred after rheumy dropped dose way to fast from 40 when negative result came back and she said I needed to be on 15 as that is the starting dose for "just pmr". I struggled with her schedule to get to 10, when I felt so ill, her advice on phone to go back to 20 for a week "just in case". My headaches were unbearable. She then gave me exactly the same taper schedule as before. My gp disagreed & I'm reducing much slower & now at 16. But this ear/cheek bone/ headache pain is getting me down. It goes down left side of my neck too & around eye aches.I have no ear infection. Left eye seems worse vision wise but over past years have had 2 cataract ops on it plus detached retina op so it's not all that good anyway but it seems worse. I worry about gca. I don't see rheumy until end of November, but she doesn't seem too much interested in anything other than the pmr, just says "any thing else, see gp". (I don't actually get to speak to her, it's a nurse conveying her messages). Sorry for lengthy post. The information & help I had had from this wonderful site has been invaluable. Thank you all.
Cheek bone pain, deep earache on left side of hea... - PMRGCAuk
Cheek bone pain, deep earache on left side of head plus headache
Hello. You must be at your wit’s end. When I got to the end of your piece my head was full of questions. This is a daunting list so feel free to ignore them. It might help the clever ones to give some opinion. Is this head pain the same as when you presented initially? If so, why was it thought to be ‘just’ PMR eventually? A negative biopsy proves nothing. Did the head pain go away with 40mg? Did you wait to be symptom free before each reduction? Do normal pain killers do anything?
When you went up to 20mg did it help? Why the Rheumy hedged their bets by going up to 20mg “just in case” seems to be neither here not there.
Did your head pain get worse or changed after the biopsy? Have you been really truthful with your GP about your discomfort?
What concerns me is that these symptoms are not like anything I’ve read about PMR. If it is GCA you’re not really being treated as per the guidelines. If it isn’t then someone should really be looking into what else eg. A CT or MRI. I don’t know why your GP is just going along with it without wondering what is up with you. If it is possible you need a second opinion Rheumy or even a maxillofacial/ENT opinion, but that’s just my opinion.
Just for the melting pot. Since my biopsy I’ve had problems on and off with my Sternocleidomastoid muscle that mimics many of the symptoms of GCA. If I get a flare up I go and get Bowen therapy and it sorts it out. Have a look at these sites
myofascialtherapy.org/sympt...
I like the picture of on this one. Ignore all the adverts
epainassist.com/back-pain/u...
Yes ear pain, tinnitus, cheek bone pain same, headaches sometimes not so excruciating as at start.
Went at 40mg, I think, just had the wobbly side effects etc.
Rheumy was only interested in result of biopsy, there was nothing at all mentioned that it doesn't prove anything unless it positive. ( all my information I have discovered from this website).
Initially not knowing any better & trusting rheumy implicitly, I just followed her schedule, 40-30-20-15 (one week between) 12.5 (one month) then would have been 10 for a month but I didn't get that far.
I managed 10 days at 10 before I called helpline & was put back up to 20 for a week with the same taper plan as before after that.
So no I wasn't symptom free, but I knew no better, just trusted her as the expert.
She said I may have ear infection but I knew I hadn't, did check with old gp (got new better one now). She just said no infection.
Cocodomol does help dull the pain a bit.
I don't have the pains all the time, but lot of the time.
Had full dental check plus dental xray this week.
I can't remember if 20mg helped or not now.
Yes rheumy hedged her bets in case I think, told me if I had trouble eating or tongue hurt to contact dept.
Pain no different after biopsy.
I thought I would check with the experts here, who are wonderful, before I took myself off to gp yet again.
My new one is very good, listens, explains & is very helpful.
I just didn't know whether this was something that can be down to pmr. Thank you so so much for taking the time to read my posts & reply, it is so much appreciated.
Where are you? Is at least one private consultation an option?
What you are describing isn't typical PMR but it COULD be associated with vasculitis affecting the ear area. I'm not saying it is - but your rheumy is failing you badly.
I'm in Buckinghamshire, UK. Sadly I can't afford to do private.
I just thought I would check with you wonderful experts, who have given me so much helpful information, before I went back to gp. I didn't know if maybe this was something to do with pmr, pred, reductions etc. It's such a minefield isn't it? I don't want to come across as a hypochondriac, but don't know if I'm right to put everything down to pmr. This is all so new & finding out stuff all the time from here. It is really appreciated, thank you so much.
Ask your GP if they will refer you to Dr Rod Hughes at St Peter's, Chertsey - you aren't that far away so it shouldn't pose a problem. He does private but also NHS and his NHS waiting list hasn't been bad for ?GCA patients. Google him - you'll get videos and his website. If nothing else - he listens carefully to his patients and doesn't believe everything you read in textbooks about PMR/GCA.
Thank you so much. I will do that. St Peters not far from us & it was where my 1st son was born 46 years ago.
Hi Bubbsyboo
Please go for the second opinion ruling out GCA A.S.A.P.40 mgs is not a high enough dose for many dealing with GCA initially so you already have a reason to be doubtful. "Trust a Rheumy implicitly" ah...……. through this journey you will learn to trust ,you, your instincts as applied to what your body will tell you, it needs. This forum will give you the support and tools to develop your knowledge. Throw "hypochondriac" out the door! Replace it with ' advocate".
I have GSC 3.5 years. Try something meanwhile and see if the pain and or headache goes away. Use an icepack on the side of your head by your ear and on the top of your head.The goal is to treat the oral facial muscles that go around your head and if inflamed can give you the symptoms you describe. Do it every 4 hours. An easy elimination.
Thank you so much. I have learnt so much from all you very helpful people. I'm so very glad I joined this site.
Wish I could help you but I know others will be here shortly to answer your questions. I would however drop your Rhummy! Feel better soon and sending you hugs!
I had similar symptoms you describe. Had scan which was negative and rheumy said it was probably muscular tension in neck and to do regular exercises and eat soft food for a few days. Also have neck and shoulder massage. The other thing I found helpful was to just massage head when washing hair - not rub too vigorously with fingernails which I was doing. So I got better!
However vey anxious time!
Thank you so much for reply. It is so reassuring to get all this information. I do appreciate it. I will do those things you mention. Headache bit better this morning, but at 2am when I take my pred it was absolutely awful. I find those cool & soothe cold pads you can put on forehead help a bit, the ones people use for migraine. Best wishes.
A negative TABs doesn't mean you haven't got GCA, I had a negative TAB but positive Ultra Sound and the headaches you describe need to be taken seriously. You've said the symptoms disappeared at the higher dose - that's classic that the dose was right for your level of inflammation. PMR alone doesn't usually need that high a dose. Go back to your GP tell him how you feel, you shouldn't be feeling so ill if you're on the correct dose for your illness. Plus the reduction is too fast and they can cause withdrawals symptoms - which are the same as the illness. The headaches aren't typical of PMR and the fact your symptoms are not receding means another discussion with your doctor. Professor Dasgupta has always told me he listens to symptoms over results. ATB.
The better ones do - but BD made the mistake for one lady I know. Told her she didn't have GCA as the TAB was negative but she felt so ill she was quite insistent about further imaging. The PET scan was lit up like a Christmas tree - but he sent a minion to admit the error...
He must have learnt from his mistake then as he doesn't say that now...
Thank you so much for reply Telian, yes I'm going to go to gp with this. The rheumy only goes with the TAB result, I never knew, till I found this site, that it could still be positive. I worry about gca.
The reductions were way too fast, but when I queried it on phone (to the nurse who conveys the messages on the rheumy's behalf), they have none of it, just say that's the taper schedule for pmr if tab comes back negative.
My gp completely disagreed & said slow taper. So I still at 16mg. When I see rheumy end of November she's expecting me to be at 10, so not sure how appointment will go 😕.
For sure the fast reduction 40-30-20-15 was an absolute nightmare, my whole body and mind were in a terrible state. I had horrendous side effects, from taking pred plus withdrawal symptoms of pred!
The rheumy's told me treatment was 18 months. When I asked what happens if pain comes back, she said take painkillers. That was what I was doing at the outset, so that made no sense to me at all.
It's only from the expert & informative help from you all on here that I now realise how very wrong she is & it's me that suffers!
Thanks again for reply, best wishes.
It's a constant learning curve, what works for one doesn't another. I was given a planned taper by my rheumie and when it didn't work I rang his secretary and said what had happened and told her the dosage I would be following - and could they please send an letter to my GP with the amended detail. I did that because in the meantime the GP receptionist tried to tell me I didn't need additional pred I'd requested as I should be down to the amount according to the Rheumatologist's letter. I gritted my teeth and said that I didn't expect her to understand my illness in terms of following planned reductions - and for that reason I would see the doctor myself and thanked her for her help. When I did he wrote the script without lifting his eyes up. Don't let them bully you for as you say it's you that suffers not them!
PS: ....and as for 18 months treatment statistics show that not to be the case, PMR can resolve itself within 3 years but that isn't always the case. if I were you I'd get some info off the website and take a copy to show your Rheumie, saves a lot of words on your part!
I had to do exactly the same regarding the pred with gp surgery! When I tried to explain to receptionist that I needed 1mg etc to make up the doses, she told me I was self medicating & that was not on hospital's regime! I was panicking as all this was so new to me & I only had 4 days pred left while they were messing me about. So I made appt with my good new gp & he said how utterly ridiculous that was & I knew what I was doing & marked my notes accordingly. I did regrettably get a bit cross with reception & asked if they thought I was quaffing down handfuls of steroids like sweets just for the fun of it!
Yes I will print some info for sure. I knew nothing when I saw rheumy, it's definitely different now! All learnt from here. Having said that, when I had my very 1st appt I had written in a list how I was feeling, tried to show her but she didn't want to read it. To be fair I suppose she did want to hear my symptoms from me talking, I can understand that I suppose. Not that it did me much good though!
Thanks so much again for taking time to reply. Best wishes.
"I suppose she did want to hear my symptoms from me talking"
Why? It makes no difference and she could have spent the time going more in depth about aspects of your symptoms. However - she doesn't sound like thebest listener in the world either.
Can you take someone with you each time? It's not easy when you feel unwell to take it all in and recall what's been said afterwards. I still take someone with me and I'm in my 5th year! I always take my list of symptoms and any questions I might have as I'd never remember all of it, you can't when on steroids. My GP always asks for my list, he's so funny, but it saves time as he knows my memory is poor. How rude of your rheumie to not show interest in your notes - she could at least have said she'd rather hear it from you. Don't let that put you off, I keep a little book not only to look back on my progress but to keep everything in one place.
It feels as if you're well armed and I'm sure you'll be fine, you've learnt a lot in a short time. At least you have your lovely new GP to fall back on and it's your choice whether you see that same Rheumie again. Let us know how you get on. ATB.
Another option is to use your smartphone if you have one - set to record. Just tell the doctor and say it is an aid memoire so you can check what was said and you should do. If a doctor doesn't like it - you can suspect they may be a problem...
Kids bought me one for my recent birthday so no excuse, son has recorded in the past and now I can! Thanks for the reminder. Not sure I want to here me though...
Learn to spell girl!
It’s embarrassing, isn’t it? As I get older my spelling is getting worse (79). Sometimes I re-read a text and think “did I spell that word “? Of course I didn’t, it was the spell checker!!! Heavens, I used to be an English teacher.😏😟
OMG Constance fancy owning up to that! I don't feel half as bad now - I was always good at English don't know what happened.....I blame the pred - it makes my brain back to front and inside out. Why on earth do I get the wrong spellings now.... the good thing is we all know and understand - I just told myself off today.... Hope you are well!
It never occured to me that I would end up as an English teacher, I was studying archaeology, but my now husband was studying German and we decided to live in Germany for a while (that was 60 years ago)!!! We had to return to England to finish our studies but were always talking about returning to Germany - which we eventually did in 1972 - been here ever since.😀
How lovely and what a switch from archaeology, hubby loves that subject he studied geology and paeleontology before deciding on surveying then many years later became a maths teacher, funny old world. I presume you speak fluent German? 
Fluent but not perfect - there’s a hell of a difference.😀
Same here - the locals keep telling us we speak "perfect German" and we just laugh, we are very good at slurring the endings so no one knows if they are right! But then we say "compared with Pustertalish, yes, I suppose we do..."
Hee hee! Most people guess I’m Dutch - but even that is ridiculous because I have a very English accent.
Apparently I don't... But I am asked if I'm Dutch too, and once or twice, if I'm Swiss! The first time I asked if my German was that bad 
If not “ English” - what?
We are both musical - and have managed to pick up dialect-tyle tone-fall. So don't really sound "English speaking German". My Irish friends who taught English both are very obviously British English speakers too - and speak far better German than I do in terms of grammar. But you hear the "English speaker".
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