I was diagnosed with PMR and possible GCA 3 months ago . Steroid treatment has helped me feel about 70% better. But my Drs can’t understand why the steroids aren’t making me feel much better so they started to taper a few weeks ago down to 15 mg and put me on cymbalta for nerve pain. Then I started with jaw pain and numbness in my cheek. Back up to 60 mg and no relief. Now they are sending me to a neurosurgeon who specializes in trigeminal neuralgia and believe I have post Covid affects because they are seeing a lot of my symptoms in other patients . The steroids have relieved my tingly head , hip and shoulder pain a lot and at the beginning my jaw pain but now it has returned and is worse- just so frustrating I just want an answer - a treatment and to feel better. Has anyone else experienced jaw pain and numbness?
Jaw pain and numbness in my cheek: I was diagnosed... - PMRGCAuk
Jaw pain and numbness in my cheek
Oh christmas - when will they EVER learn!! Covid seems to have brought out attacks of hearing hooves and only wanting zebras! 60mg isn't actually THAT high for GCA that is causing nerve problems.
But if they want zebras - maybe it is giraffes they need to look for?
pubmed.ncbi.nlm.nih.gov/201...
jag.journalagent.com/agri/p...
Not common - but rare doesn't mean it doesn't happen!!!!
I know! So are you saying it’s probably not brought on by Covid and can all be GCA symptoms and not treated properly with amount of prednisone?
Not probably - can't be sure but very possibly not and it MUST be considered that it COULD be GCA that isn't under control at 60mg. Have things got worse at lower doses of pred?
I agree with you- I seemed to be doing well for a few weeks around Thanksgiving on 20 mg. Then this week it all came back and jaw pain returned worse than ever and that was my very first symptom back at the beginning . I have more GCA symptoms than PMR so I think the prednisone is helping that! Drs keep pushing me off to second opinions and say I’m a mystery. But it can’t hurt to go see this neurosurgeon- Thank you!
Strange how so many of us are “mysterious or atypical” ....
You know what I reckon - so many of us are atypical, it begs the question as to whether their "typical" exists ,,,
Doubt if it does - no wonder they’re out of their depth most of the time!
Absolutely typical of PMR progressing, whether to LVV or cranial GCA.
Hello ,I had COVID on December 15th December..it was awful ,I felt last week I was turning a corner and then Wednesday started getting pain in my ear ,temple above my nose , then on Thursday I had numbness in my chin horrific shooting pains through my teeth it is torture jaw pain an throbbing...thought it was my teeth but GP thinks it is TRIGEMINAL NEURALGIA which I have been prescribed CARBAMAZEPINE 200mg twice a day ,I’m not getting on with them at all ...and also my symptoms are not going away constantly feel the numbness in my chin and lip ..but end up taking medication as the pain is unbearable,feeling desperate and want to see a neurologist.
I’m sorry you are going through this. I would definitely see a neurologist- I’m on carbamazepine too- hated to start it- just another medication! Is it helping your pain? I’m on my 3rd day taking it and feel a little better. I have the same symptoms as you, started at the dentist when this all started and thought it was all due to GCA but prednisone never really helped me but it seems carbamazepine might . At the very beginning of my journey I had two doctors tell me they thought it was post Covid symptoms and they still believe that but I am still going for testing / I don’t think they know enough about it yet I’m curious what you have do you have GCA
Hello
Thank so much for your reply , I’ve been absolutely shocked to get the attack last week , my GP is referring me to the pain clinic which I’m sure have all sorts of experts....I’m not getting on well at all on the medication really ,I’m on day 6 I’m drowsy ,wobbly on my feet my thoughts are slow ,so my GP going to try a different medication ...but it is dulling the pain but I can still feel it there in the background .
Never even heard of these conditions till now ! GCA. Well I have started to get flinching on the other side ? But my vision has been ok .
I think COVID is the trigger ☹️
Thank you
Evening PMRpro
Exactly a year ago I had sudden hearing loss in my left ear.
Unfortunately, after many treatments I never got my hearing back. Just left with a perforated ear drum, after the Consultant injected high doses of cortisone directly into my middle ear. Ouch😩
It was suspected that this was caused by a virus or my immune system. I still have my doubts and believe it could be caused by PMR.
Before my PMR I had acute hearing.
No point saying “steroids aren’t working” if they don’t put you on a high enough dose...or course they’re not working!
Me - jaw pain certainly, but not numbness.
As for PMRpro’s comments re zebras and giraffes- seems you’re being treated by donkeys!
Hope you get a resolution soonest.
Or maybe mules ...
At least I said donkeys and not as@(s.....,
Asses ...
Yep!
Love the exchange between you 2
Although we’ve never met.....I think we both have a similar sense of humour.... which brings out the best (or maybe the worst) in us.
A female, but obviously younger and better looking version of the 2 Ronnies!.
She’s the clever one....
We are all clever in our own way!! It is so good to smile, or even chuckle. Keep it up.
Be careful what you wish for! 😳
I had severe jaw pain for 4/5 days before GCA headaches started, Rheumatologist called it extreme jaw claudification, both sorted by 70 mg pred (1 mg per kg). No numbness.
I can’t really add anything of use to you Bro-. Just that some people don’t get more than 70% relief with Pred. I am so sorry that you are suffering like this. I am astonished at how Long COVID seems to resemble our conditions. Have they tested you for the antibodies to confirm the condition?If you feel up to it, the outcomes for you would be very interesting and informative. I wish you well!
Thank you! Yes I had 4 negative Covid tests and negative antibody test. Although , I did lose my sense of taste and smell at the beginning of my PMR diagnoses - so, I’m sure I had it and the tests were false negative. Wishing you well too
Long Covid is just a virally induced autoimmune condition - but it is new and exciting and they are guaranteed to get their work published. But it isn't going to help most existing a/i patients nor, in some places, is it going to be taken seriously enough to prevent long term organ damage if it occurs. They will be parked alongside lupus and other patients ...
A number of GCA patients have a much higher dose than 60 mgs, initially to control the inflammation. One woman I know of was on 100 mgs at the beginning. You do worry that unconfident doctors could be fiddling as Rome burns. Wishing you a brilliant doctor who can see the wood for the trees. Let us know. X
Hi I have experienced numbness in the left side of my face, all symptoms have been left sided, have mentioned it to doctor and consultant and basically they have dismissed it as if I have made it up, but I can assure you that it has become less frequent as the inflammation has become better controlled.Obviously you need to rule out a stroke
I actually think they may discover more about GCA ,LVV with covid studies because what I have experienced is so similar to what people report with long covid
What is LVV? Lol also last pandemic PMR was on the rise
Large vessel vasculitis, started with GCA and went into all large vessels particularly on left side. Diagnosis by ct pet scan
Bro- GCA 6 Years-numbness my danger symptom.
I can add info as numbness that goes across the bridge of my nose and or/my left cheek is my warning sign that I am flaring. I act immediately. As I am in my 6th year of GCA I can look back and decipher what actually happened. It changes,keep a daily journal. You are now working wih a puzzle and any factor changes things.
I too had "nerve damage diagnosis".
I had three teeth pulled and a root canal done within 6 weeks. One tooth had to be pulled without any freezing. Short story I had numbness in left cheek,referred to doc and offered some pain med and appointment for neurologist. Same dignosis...nerve damage. Refused the meds and saw neurologist 9 months later.( waste of time) By then GCA was diagnosed after I took myself to Emerg with a raging ,different headache ,( be on guard for another symptom) and was lucky a doc knew the symptoms. He prescribed 50mg of pred and sent me home . NOTE: he did not give me any pred in Emerg. And it was 6 months after the numbness.
Issue:
You have told us "possible GCA" that . I was lucky and have a doc that acts in my best interest,he went to the extreme to get a biopsy for me by a surgeon and done immediately. Trouble is that it is too late for you to confirm by biopsy ( you have been on pred too long). That is leaving room for elimination.
You were not 100% better when they decided to have you taper and throw in a drug because it may be nerve damage and reduce pred.If you step back you see what direction they are trying. Instead of thinking maybe 60 mg was not enough lets up it and see.You have gotten worse.
Great Covid has been eliminated,makes it easier!
Like the Ladies say 60 mg is, in a lot of cases not enough.
You have more info, keep reading as you will find clues and answers from all on this site but it will be burried so read everything.
Ask questions here,there is never a "silly" question. And there is a lot of knowledgeable help.
Advocate for you.....
Best of Luck
Merry Christmas
ld
Wow- thank you so much this was so informative! I appreciate it -can you be my Doctor? Lol. Did your nerve damage and numbness come from having your teeth pulled or GCA? I believe In my heart I definitely have GCA. Since September 9th I have jaw claudication, extremely sensitive scalp , severe burning headache! tingly head and tingling goes across nose and face sometimes down my neck and my left arm- som days I’m flu like , some days my hips and shoulders hurt . . It’s ever symptom of PMR/GCA. Even though my inflammation levels have never been raised- MRI normal - temporal biopsies normal - catscan normal!! Even when I’m so bad my blood is normal. BUT that does not mean I don’t have it. Clearly it’s textbook symptoms- I don’t know why they started tapering thinking I didn’t have it. I’m not any better and jaw is worse. I’m not sure what else they are looking for. Mentioned trigeneral neuralgia that’s why they are sending me to a THIRD neurologist- I’m sorry I’m venting but I really like what you had to say and would like more input. How did you get better and regulate your prednisone and flare ups in a long 6 years? I just want to feel myself again.
Merry Christmas to you too!🌲
Bro-
A lot more info thanks.
I believe the trauma of all the dental brought on the GCA. And the numbness was and is my first symptom I do not have enough pred. Just an opinion but added info can always change that. Always leave your mind open to all input,store it and like I said note things. For example my first symptom was a horrific head ache. That changed as new chronic conditions as TMD and Sinus issues arose. I now had three reasons for a headache. So like the doctors seem to be doing with you, eliminate a cause ,work with new info that you provide.
For me,I understand things better but it's a daily battle. I know the importance of letting my doc know of any new issues.
You have added a lot of new info that seems to clarify why you have not gotten a clear diagnosis...yet. You have some symptoms that do and some that do not fit what you have in your heart should be the answer but it seems you are open to a different answer.
Your venting in the right place. You need to so you can wake up tomorrow and restart.
You also are doing what you have to by working with the doctors. Its an art you have to develop along with patience. Keep the paths open.
Just seek immediate medical help if you feel you are in any kind of danger.
Your puzzle has many sides., you might use a wall board instead of a small journal!
It will take time,a curious mind and kindness to self.Welcome to the journey and all of us that care and will listen.
😀
Just to say I was diagnosed with GCA, Feb 2019, and quickly by a young doctor who had just been on a course to alert GPs of GCA. I went immediately onto 45mg.pred and all symptoms disappeared overnight never to return (hopefully!) Like everyone, I had never heard of this condition and suffered pre- diagnosis with sensitive scalp, neck pain, acute jaw tenderness and pain in my jaw that 'froze' certain teeth. This discomfort continued day and night (not just when chewing) and I tried to treat it with over the counter painkillers, getting up in the night to take doses very 4 hours. I went to an osteopath who thought my neck was 'out' and he manipulated it making the neck pain worse - no other recognition of my symptoms. After a month I went to the doctor -immediate blood tests -huge inflammation - onto pred that afternoon. I'm not sure if this helps you, everyone of us is different with wide and frightening stories of how the medics treat us. In the end, each of us is forced to take responsibility for our own welfare - and thank goodness for this forum -a light in the darkness.
Have you had Covid-19?
I was tested 4 times at the start of all this. Negative and antibody came back negative but I did lose sense of taste and smell for 6 days when I first was sick. I’m going for another antibody
I had trigeminal neuralgia several years ago, and the pain was unbearable, and very definitive. I couldn't even bear air blowing on that part of my face. My Dr told me that it was 'the worst pain known to man'. I don't know if that is so, but I have never known anything like it, and I hope I never have it again. I was eventually prescribed Tegretol (usually for epilepsy, I believe). I have PMR, and Sero-Neg RA, but even the pains from that are nothing like Trigeminal Neuralgia was. It lasted 3-4 weeks. I do get recurring coldsores, in the same area as the trigeminal nerve, which I had never experienced prior, so can only asdume they are connected. I hope you get your jaw pain sorted
I heard it’s the worst pain ever! My friend has it and they operated on her . I don’t think that’s what I have , mind is more a constant throbbing jaw and tingly head I’m sorry you had to go through that
Thankyou! It was over 25 years ago...and I still 'feel' it when I think about it! I think any constant pain in the head/face is horrible because its seems harder to 'distance/distract' yourself from....I hope your friend's op goes well, and I hope your jaw settles down quickly. Take care, stay safe.
40 mg then 60 mg prednisone initially. Finally I had to be on 80 mg for about 6 weeks. That worked but the whole GCA process is long and hard. Good doctors that know what they're doing is the key. Good luck to you.
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