When I saw the rheumotologist in October he said I have vasculitis and he believed I had GPA (Wegeners.
I now have pain in my face - particularly across my forehead and under my eyes, this pain is on both sides of my face and radiates to my teeth. My sinuses get painful when the air is cold too.
I have had x-rays of my teeth, all good (well... I snapped one and need a crown as the filling fell out of another which has no nerve) but nothing showing anything that would explain the pain.
I have been taking plaquenil for a year, also take paracetamol and I added naprosyn when the pain got severe in January this year, I tried reducing the naprosyn (after discussing with a GP) to no avail because as soon as I reduce it the pain returns with avengence.
My GP is baffled, he suggested neuralgia but he would expect this to be on one side of my face not right across both sides. He checked my jaw to see if the pain was coming from there and he asked about my teeth but was satisfied it's not that.
He referred me for a CT scan of my sinuses which I had and am now awaiting the results.
Anyone else out there suffer anything similar or can shed any advice or light on this puzzle?
Written by
AllyGY2013
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I have had facial pain for the past 9 months. It appeared 1 day with a pounding frontal headache and blurry vision. This was against a background of 10 months of joint and muscle pain, weight loss, fatigue and anemia.
The pain started in my jaw when chewing, within a few days my lips and tongue were intermittently numb and the pain affected my nose as well.
The original ?diagnosis was GCA, temporal biopsy was negative. The pain didn't respond to high dose steroids initially or painkillers. I saw Max Fax, they ruled out TMJ problem and thought idiopathic facial pain ( a wastebasket diagnosis! )
I tried Gabapentin, didn't help. When I reduced my prednisolone right down the pain was worse. Interestingly being outside in the cold makes my pain worse too.
MRI of my face was negative. I don't have a definitive diagnosis for all my symptoms( they all get worse and better together! ). Have attended multi disciplinary vasculitis clinic, they now think its more a connective tissue problem ( my complement is low and lupus bloods equivocal ). Interestingly they say that they can't reconcile my headache, facial pain etc with my other symptoms! I am on Methotrexate 25 mg injections and 9 mg of pred and my pain is settling although I had a bad flare 4 weeks ago.
I have to see ENT next, the end of my nose becomes very cold when the pain is bad and my sense of taste and smell is affected.
I am not sure how helpful this has been as so far no one has come up with a dagnosis/ explanation. It certainly is of comfort to me to know that someone else has something similar! I lost 8lb in weight in 5 days when the pain first appeared as it was too painful to eat and it has stopped me piling on the weight whilst on high dose steroids.
I hope you manage to get an answer soon. If they are querying GPA then hopefully the sinus CT will provide you with some answers.
Best wishes
Keyes
Hi, I too suffered awful facial/dental pain. My teeth also were x rayed and were fine. It started with what I was told was sinusitis. The pain eventually spread to my scalp and my GP said it was because I was frowning so much. It was so tender I couldn't brush my hair or put on make up to hide the pale complexion and dark eyes. I had a CT scan of my sinuses and they were clear. But I did also (and still do) have a lot of problems with my nose and have to rinse it regularly...dead glam huh? Anyway, once I was diagnosed with having WG I was put on 75mg prednisolone and they went away. I still feel the headaches in the background, now I'm reducing my steroids and the Dr looking after me has requested an MRI scan to see if the vasculitis is still active anywhere other than my nose. My GP prescibes 15mg codeine tablets and I take two with two paracetamol, it's like the sun shinning on your head when they work. I hope you feel much better soon...it's so horrible to have to put up with. Take care.
"The pain eventually spread to my scalp and my GP said it was because I was frowning so much. It was so tender I couldn't brush my hair" is a text book statement about GCA. Not the GP comment (what a prat) but the rest. It would go away on 75mg pred.
I guess I might have been frowning at the time! GP has actually been very supportive since I was diagnosed and has made efforts to educate her self further. She has me and one other lady with WG. It's all too distressing that everyone I have met ( in this new world of vasculitis) has suffered so much before getting anyone to realise that they aren't a neurotic hypochondriac!
Hi I was diagnosed with WG/GPA 10 years ago. I started off with terrible pains in my sinuses and teeth. Nothing untoward at the Dentists. I had 4 different lots of antibiotics for sinusitis which didn't work. Got an urgent referral to ENT who found a polyp in my nose and the biopsy showed WG. I was on constant painkillers . My hearing went and my voice disappeared . I was admitted to hospital and given morphine ,prednisolone and cyclophosphamide . Only then did the pain start to lessen. My sinuses are very scarred due to the damage caused by the inflammation. I still have the nasal crusting which appeared at the same time and use a nasal rinse everyday. Good luck
I agree that sometimes it is just reassuring that you are not the only one suffering a particular symptom.
I've lost what singing voice I had just can't raise a note anymore, and have had laryngitis twice recently, lost my voice completely last week but have a husky (some might say sexy) voice now! Will see how it improves. My nose is dry and sometimes feels ice cold even when the rest of me is warm.
Thank you for all for your responses, I really do appreciate them.
The voice loss/husky voice is also typical of acid reflux they can have a look very easily with a laryngoscope to see if your larynx/vocal cords have been damaged.
I think the pain is fairly common with wg for months before I was diagnosed i was backwards and forwards to the drs with pain in sinuses and ears I had pain in the eyes etc. My ears still cause a problem and my voice goes a bit funny to Even though I am in medically induced remission ear problems and throat problems still exist
I was diagnosed with WG 12 years ago which started in my gums which I thought was my wisdom teeth coming through , dentist checked but nothing there. Pain got worse then breathing went so ended up in hospital being diagnosed with asthma so put straight on steroids. Eventually after a few trips to A&E they referred me to ENT where after a few months they eventually diagnosed me with WG. About a year after this I was suffering the facial pain again but worse this time. I also was drinking a lot and running to the toilet all the time. They eventually told me I had Diabetes Insipidus which is my piturity gland (your main hormone which lies just behind your nose) is partially damaged due to The WG which again is very rare . So it will be good if you could get an MRI just incase there is any active WG any where else in your head. Hope this helps and good luck xx
I have had quite a few x-rays and scans in the past couple of years and have just had my sinuses ct scanned, I am waiting for a lower abdomen scan to be arranged also; when I suggested that an MRI might be better to get a fuller picture I was informed that there is a 6-12 month waiting list for an MRI locally, that's why they are doing ct's. I think I'll wait for the results of my sinus scan (should be later this week) and see what that holds and discuss it again with my GP.
It's difficult - I never know if I hope they find something or that they don't, I suppose I hope they find something that they can do something about!
[quote="AllyGY2013"] My GP is baffled, he suggested neuralgia but he would expect this to be on one side of my face not right across both sides. [/quote]
Many diagrams incorrectly show facial nerves stopping at the mid-line, however in reality facial nerves do cross the mid-line : they innervate their own side and to a lesser degree the contralateral slide.
So trigeminal neuralgia is still a candidate , ( maybe as a consequence of vasculitis of the vasa nervorum ).
If it is trigeminal neuralgia, carbamazepine can be an effective treatment.
Facial pain seems to be a feature of various types of vasculitis, and something that the average GP finds difficult to cope with. And any facial pain seems to really take over, and make it difficult to think or concentrate, which doesn't help when you are trying to explain! If you have large vessel vasculitis, your carotid arteries can get inflamed and this can mean things like pain when you chew, a sore scalp which makes it difficult to brush your hair and sore patches on the temples....it can also affect your vision and make you feel dizzy a lot. I've also had sinus problems.....I started them when we lived in Holland and my GP there told me that they were the result of living below sea level! So I think that facial pains may be part of the whole thing for lots of us.
I think you are right BronteM. I have widespread arthralgia and myalgia which I can cope with. When my facial pain flares up I find it very distressing as it feels like my face is going to explode! There is also the annoyance of Dr's refusing to consider all my symptoms as a whole!
how this brings back memories.....before diagnosis I had bad sinus problems,then toothache where I had no teeth,bleeding gums and spontaneous nosebleeds........later when I became really ill,red eyes throat felt like I had mumps,agonising pain in my ears,it felt as if they would burst.....high dose prednisolone made me feel better until I got a diagnosis of wg,,just been through nearly 2 years of hell after a flare due to having methotrexate stopped because it was affecting my liver,and mychophenelate made me very poorly....but it seems to have sent me into remission.....but take it a month at a time,....great to feel almost normal again after more than 8 years.........georgia
I have facial pain on the right side of my face. I saw a neurologist, and he prescribed an increase in my neuron tin, which has helped. I can't take Tegretol or he would have subscribed that instead. I encourage you to be referred to a neurologist.
My GP's secretary rang me today to say that the ct scan 'just showed congestion' - not surprising it showed that as on the day I had streaming cold and had laryngitis.
Not sure where we go from here? I guess I'll reduce the naprosyn again and see if the pain returns, as it has in the past.
Hi Ally,
Can your rheumatologist shed any light on this? If you are ? GPA have you ever been given a trial of prednisolone or immunosuppressants? It would appear that vasculitis has caused facial pain for most of the people replying to you.
I saw the rheumy in October 2013 and will see again October 2014, GP has an interest in rheumy and looks after me between times.
Originally was diagnosed as fast onset rheumatoid arthritis, changed to lupus SLE, then I had an ANCA positive blood test which the doctors said they were waiting for, and with other symptoms progressing that diagnosis was changed that to vasculitis, ?Wegeners.
Was put on prednisolone when rheumatoid arthritis and lupus diagnosis, then changed to plaquenil whilst still thinking lupus but querying vasculitis, by rheumy who said, after vasculitis diagnosis, I could stay on it as 'it wouldn't do me any harm'.
Guess the waiting game is just making me feel a bit down and fed up at the moment (I'm not naturally a patient person). I shouldn't be though as there are many other people a whole lot worse off than me!
Hi Ally,
Although the plaquenil won't do you any harm it doesn't seem like its doing you a lot of good. A year is a long time to wait between rheumy appt's, although your GP may take a special interest in Rheumatology that won't be good enough if you have vasculitis. Have you had an ENT referral? The danger is that end organ damage may be occurring while you are symptomatic.
I am not surprised you feel fed up and down. It doesn't matter whether other people are sicker than you, you deserve appropriate care. I hope you manage to find a solution soon.
I have trimenangeal neuralgia, and did a search as to the cause associated with it, and vasculitis came up, because the blood vessels become inflamed, and press on the nerve. My neurologist upped my neurontin, and that has helped.
Interesting reading. I had trigeminal neuralgia 20 years ago, it was brutal, used to spend some days crying from the pain. I was put on Dilantin for a few years and it finally went. I'm reading these posts about face pain and am thinking I will phone my ENT doctor this week. The head pain I get now is accompanied by severe one sided ear and throat pain, which I had at diagnosis of GCA but maybe it's a combination? Never hurts to get everything checked, thanks for the prod.
I had trigeminal neuralgia too.... lasted years 24/7. Burning, tingling, stinging, twitching, electric shocks....No relief, heat made it even worse. Out of desperation, I finally gave flaxseed oil supplements a chance since there have been studies suggesting this helps repair the myelin sheath around damaged nerves..... and to my surprise after about 3-4 weeks I felt improvement. I stuck with it a couple years and not only did it help, it steadily got rid of it in my case.... well at least that's what I'd like to believe.
I read somewhere that flaxseed oil supplements could help but don't remember what for - probably read it somewhere on this site?! Will certainly hunt some down locally and give it a try. Nothing ventured, nothing gained.
YES! I am in my first real flare up of GPA. My sinuses are affected. Feel stuffy but nothing “comes out” when I blow. Sometimes some bright red blood comes and then my nose stings. However the worst problem is tooth pain. I had braces as an adult and my teeth didn’t hurt nearly as much then as they do now. Air conditioning in the car makes the pain worse. I now have numb chin, lip and jaw in a section of my lower face. The tooth and jaw pain is intense. Finally had an MRI yesterday. Neurologist is still waiting for report but she didn’t see anything unusual on quick review. Now waiting for insurance company to approve CT Scan of jaw.
Sorry for your problem, but you’re not crazy. I too have terrible tooth and jaw pain. Hang in!
Hello Yes i have pain in my face, had this long before told i had GPA wegener's. my face even swells on the left side mor that the right. i makes me look like a different person. i understand it is from the sinus because with GPA it tends to hit there i deal with headaches joint and muscle pain as well. all the result of the disease we have. some time better,sometimes less.
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