Does anyone with GCA find that cold weather/wind makes their jaw/facial pain worse?

Any information gratefully received!

[polkadotcom]

A resounding yes to that! Any kind of cold weather, be it frost, wind or snow is going to make my head ache and the muscles tense (which just makes it worse). I did have a bout of trigeminal neuralgia a couple of years ago which I believe was triggered by the cold weather.

Going out in it is a nightmare, I bundle up in fleeces, scarves, hats and scarves again. And that's just to go shopping! I also find the cold weather makes my hands and feet painful, does anyone else get this?

[Whittlesey in reply to polkadotcom]

Yes, the jaw ache and sometimes a bad headache.

[bowler]

I went out yesterday for my usual footpath walk ,[ trying my best to keep fit ha. ha ] there was a chilly wind, and all afternoon evening my teeth ached !! I have GCA/PMR.

[ritter]

Hi Keyes, Ritter here, Yes I have GCA but have not noticed that when cold it is worse as I sleep in a very cold room in a very cold house but I do not like central heating so as you know we are all different,and I only had the jaw pain the first few months of been diagnosed as the time went by the jaw and other pains left me, but this was 18 months ago,having said that my stupid Doc was working off numbers instead of symptoms so doing that he kept me on high dose of steroids and that coursed me dreadful pain and added to my multiple embolisms have been in agony for 1 year,have you seen a Rheumy yet?and if so what has he said about you jaw pain,hope you have a good doc as not many of us do and that also apply s to your rheumy as well, some do not know anything about GCA or PRM they are quite brain dear re the disease.what dose of steroids are you on at the moment,are you new to the site its a very helpful site I do not know what I would have done without it.be very careful with GCA as you may know you can loos your site if left untreated,good luck and kind regards Anne (ritter)

[Hidden]

Thanks for the replies. Ritter I don't have a diagnosis of PMR/ GCA. It's all very complicated! Am only 47 but have had a years history of bilateral shoulder and hip pain, anemia,weight loss and fatigue. Symptoms responded to 15mg of prednisolone but shortly after that awoke one morning with headache, blurry vision and developed jaw pain when talking/chewing later that day.

Initially treated with high dose steroids including IV methyl pred, temporal artery biopsy was negative.

Now in situation where I don't have a diagnosis. On pred 12.5 mg and started methotrexate this week. Have blurry vision, headache and jaw/ facial pain every day as well as terrible fatigue and my joint pain has returned.

Have been told it can't be PMR/GCA as too young. Have had a second opinion and hopefully am going to see a vasculitis expert next.

I try to go for a walk every day, was out last night in the cold and facial pain worsened, it's really aching today as well.

I am really hoping for a diagnosis/ resolution to all this soon. Have been off work for 4 months now and am sick of these symptoms.

[mickt in reply to Hidden]

Hi Keyes,i too have not been given a definite diagnoses.They just treat the symptoms,i lost sight transiently in left eye.Was in hospital for 5 nights on iv metyl pred.Saved sight thank god.Im been treated for giant cell vasculitis.Had pmr symtoms too. Was reducing from 80 mgs to 20 mgs in 7 weeks on 20 got bad double vision 20 times a day,so was put on 80 reduced down to 25 now.

Im on cyclophosphamide in fusions at present 5th onr coming up.So hoping for no relapses.Im 50 yr old and have been off work since back end of may.I suffer from the fatigue of this illness I like you push myself daily for a walk try to do at lear 30 min that's my whack for the day ,im a type 1 diabetic,have addispns disease also ,they make me tired alone but this pmr and gca have taken it to a new level.Im on amytripelline for diabetic neuropathy ,like a burning pain in legs and feet.Hope you get sorted ,all the best mick...

[Hidden in reply to mickt]

Hi Mick, thanks for your reply. I had been following your story on this forum and thought that we had a lot of similar symptoms.

Have you had any scans to try and confirm the diagnosis, such as MRI, CT or CT PET?

Your Dr's sound great in that they are willing to treat your symptoms. My Rheumatologist, although good in many ways, doesn't think my blurry vision, jaw/facial pain and headache are connected to each other. The jaw pain is the worse, at it's peak I lost 8lbs in less than a week as I couldn't eat. I am still struggling to maintain my weight, no weight gain from steroids for me!

Hope you start to feel better soon.

Keyes

[mickt in reply to Hidden]

Ive had 2 mri ,1 ct ,an echicardio,chest x ray.slight damage to blood vessels in head but nowt to worry about mr consultant said ,oh fogot ive had a lung function teat also.I had a biopsy which was negative.If you go tto forums that sambucca has suggested they are helpful.I was told off my rhuematologist last week that i may be on steriods for a couple of years ,hope fully at lower doses as getting the shakes and weight gain.Its your eyesight they should be concerned about the most i think.Good luck mick....

[jinasc]

Keyes

Go to the website of PMR & GCA UK and read and download the BSR Guidelines on Diagnosis and Treatment of GCA.

Where do you live?

[Hidden]

Hi Sambucca, have done that! Can't say too much on here but the second opinion I sought was from the UK expert in GCA.

I have done everything I posibly can to get a diagnosis.

I personally believe that younger people with PMR/GCA present in slightly different ways and have greater compensatory mechanisms which protect them from end organ damage. The majority of the case reports/ studies are from people in their 70's who are physiologically different from people in their 40/50's.

Posted today as face is aching, analgesia doesn't help and am feeling miserable!

Just felt like some sympathy from like minded people, and I thank you for your concern,

[Hidden in reply to Hidden]

Risk age for GCA is above 50. (some outdated documents say 60/65 etc - it does not appear to have a consensus) But I do take your point. Rheumatologists often deal with a lot of elderly people and if you seem young, they think you can't have it.

[Whittlesey in reply to Hidden]

Hi Keys, Sambucca and Omega, I have a diagnosis of GCA due to the biopsy and a high C reactive protein. I was 59 at time of diagnosis. I suffered with the extreme headaches, and feeling not well for four months, because the head of the neurology department at Mt. Sinai in NYC felt I didn't have enough "markers" and that I was "too young" for GCA. My mother had it and I remembered her symptoms and I had them. My neuro surgeon for another condition at Mt Sinai, saw my records and the high c reactive protein and asked if he could do a biopsy for GCA. I said yes and it was positive -- extremely enlarged macrophages, with the cell walls burst and some of the killer t cells present. I had been also been having problems with my eyesight and they started me on 80 mgs of prednisone. I got sick pretty quickly from the prednisone, but the headaches were soon gone. am now on 3mgs of medrol and 10 mgs of methatextrate by injection. GCA is very dangerous. I no longer see doctors at Mt. Sinai and have found a very good rheumatologists. Many of the other doctors know very little about GCA. That four month wait should never have happened. My understanding is that in the U.S., the youngest person with GCA is 50. There may be more that are younger that are unreported. Would say that insisting on the tests is important. wish you well and good health. all my best, Whittlesey

have been reading this study from the U.S., there is a lot of information in it. Some may help:

ncbi.nlm.nih.gov/pmc/articl...

I was reading it concerning adrenal lack of function, but it has some good facts about diagnosis of GCA. wish you health and the best, Whittlesey, U.S.

[jinasc]

Keyes

You could perhaps talk to your GP about the following. I don't know if it will be of any help but if you don't ask then you don't get.

STUDY OF THE COMPARATIVE STUDY OF ACCURACY OF TEMPORAL ARTERY ULTRASOUND VERSUS BIOPSY IN THE DIAGNOSIS OF GCA. (TABUL Study)

There are 14 hospitals in the UK currently running the above study. This study has been funded by the HTA (Health Technology Assessment) and started in March 2010.

It might be possible to get a referral or find out from the HTA where the hospitals are located and see if you could get a referral. One of the hospitals is located in Oxford.

Are you a member of PMR GCA UK, registered Charity? If so you could ask them if they have any information on the hospitals taking part.

[Hidden]

Hi Sambucca,

Am aware of TABUL study but I think that 1 of the exclusions are patients under the age of 50 ( all GCA studies appear to have this exclusion!)

Have phoned the PMR/GCA helpline and they were great but the problem is the lack of a diagnosis.

My inflammatory markers are raised and I have been told that I have some type of auto immune inflammatory condition, hence still being on pred and starting methotrexate.

My concern is that without a definitive diagnosis they are forced to treat me empirically and this may delay my recovery.

The BSR diagnosis guidelines for GCA are very interesting in that they appear to have come in for criticism. For example they make no mention of jaw claudication which is pathogenic for GCA.

My rheumatologist has been great in many ways and the bottom line is no Dr is going to put their name to a diagnosis that they are not sure of.

Am glad of the existence of forums like this.

[Celtic PMRGCAuk volunteer]

Hello Keyes

Your symptoms of "a years history of bilateral shoulder and hip pain, anemia,weight loss and fatigue", were among my symptoms at diagnosis of PMR and GCA and the fact that your symptoms responded to 15mg of Prednisolone would lead most medics to confirm the diagnosis. At 47, sadly you aren't too young to succumb to PMR/GCA - my friends''s young neighbour was diagnosed with temporal arteritis in his teens!

You mention that when you experienced headache, blurry vision and jaw pain when talking/chewing you were initially treated with high dose steroids (I assume at a dose of 40-60mgs?), and I wondered whether you had a good response within a few days - in my case I had relief within hours. I didn't have a temporal artery biopsy but I understand that the biopsy doesn't always show up the large cells in the small piece that they examine. One friend had a few biopsies, all negative but her symptoms were treated as GCA.

Certainly in answer to your question about cold weather aggravating the face and jaw symptoms, just the slightest puff of wind used to cause me so much neuralgia-type pain, which used to shoot through the side of my head and face, and I couldn't bear the wind in my eyes - I became the oldest neighbourhood 'hoodie', donning sunglasses even in winter! In fact the GCA seemed to cause so much sensitivity that I even had problems after dental work

It must be so very frustrating for you not to have a definitive diagnosis in spite of seeking a second opinion at what sounds like a high level - I do hope the vasculitis consultant can help. Meanwhile, have you checked to see if there is a PMRGCA support group that meets in your area - it might be helpful for you to exchange your experiences with others who understand.

I hope tomorrow is a better day.

[Hidden]

Hi Celtic,

Thanks for your response. Unfortunately my symptoms didn't settle right away despite pred at 60mg and IV steroids. They were starting to settle but have been on a quick steroid reducing regime and the symptoms are now as worse as ever.

I can see the problems with a diagnosis of GCA in someone my age with an atypical response to steroids, but in terms of my symptoms it is the only diagnosis that I can find that makes sense!

Here's hoping for a better day tomorrow for everyone with this dreadful illness.

[Hidden in reply to Hidden]

I don't think it's just "you" and strictly in "GCA" as such. Diseases are often so unique to individuals and presentations do often vary. Medical opinions are just "opinions". After all, it looks like doctors can't even decide what would be the suitable diagnostic testing for GCA. Consultants often obsess over "the gold standards" for diagnosing different diseases nowadays, to give them far more credibility. I don't think diseases honestly care who to strike and how to strike. Doctors can never begin to understand everything about these diseases in their life time.

Doctors opinions aren't absolute and highly subjective as to what they personally believe.

[Celtic PMRGCAuk volunteer]

Hello again Keyes

Oh dear, what a shame to hear of yet another sufferer of GCA (possibly!) whose symptoms started to improve but who was then put on a quick steroid reducing regime - it never works unfortunately! I'm wondering whether your inflammatory markers were being checked before each reduction. I hope you haven't got too long to wait for your appointment. Meanwhile if you haven't already seen one, you could seek the assurance of a consultant ophthalmologist to carry out a complete examination of your eyes.

[Hidden]

Hi Celtic,

Have seen optho who say there is nothing wrong with my eyes despite blurry vision and occasional double vision. My visual acuity has worsened and for the first time I require glasses for reading. A weird symptom is that I have great difficulty getting my eyelids open in the morning, it can take up to 15 mins on the left side. Occasionally my vision is absent first thing, but that has never happened during the day.

I have also seen Max Fax for the jaw/facial pain. They have suggested both idiopathic facial pain and TMJ problems, treatment for both has been ineffective. I am awaiting a MRI of my face as have ongoing numbness in nose, lips and tongue.

The frustrating thing is that there is no multi disciplinary working. Each dept sees to their own speciality and no one joins the dots. My rheumatologist thinks the jaw pain, headache and vision probs aren't related despite me telling him they get better/ worse at the same time.

I think there is always a race to take someone off high dose steroids, they are putting my raised inflammatory markers down to the as yet undiagnosed condition!

I don't know what else to do. I have phoned, e mailed and paid for private consultations. I did research and found out about the Vasculitis consultant and e mailed them, they are willing to give me a second opinion.

My family have been great and are keeping me going. I realise my story is not unique, there are many hoops to jump through before anything rare is diagnosed.

[Celtic PMRGCAuk volunteer in reply to Hidden]

Hi again Keyes

Just a thought now that you have mentioned numbness in your nose, lips and tongue - if you haven't already seen one, perhaps a neurologist can help?

Meanwhile, it's good to hear that you have a caring family around you. I could not have coped without my wonderful hubby especially during my many months in bed with undiagnosed PMR.

[Hidden in reply to Hidden]

"My family have been great and are keeping me going. I realise my story is not unique, there are many hoops to jump through before anything rare is diagnosed."

I think that's probably true.

[Runrig01]

Hi Keyes, your story reads very similar to my own. I am 48 and had PMR symptoms for 15 months before diagnosed with Atypical PMR, due to age and normal bloods. 3 months after starting steroids I started having GCA type symptoms, burning temples, jaw cramping and painful tingling tongue. That was 6 months ago, now have a pulsatile tinnitus (hearing pulse in ear) which GP says indicates blood flow problem. Yet my Rheumy will not listen re these symptoms because I'm too young. I'm waiting for a second opinion, but feel most medics dismiss because its unusual. Like you I hope to find an answer soon, as disturbed nights make it difficult going to work. Take care, I'd be interested to hear how things go for you. Best wishes, Runrig

[mickt in reply to Runrig01]

Hi Runrig,you should not be dismissed as been to young ,you should be listened to and respected duty of care and all that.m only 50 and there was doubt about my gca and pmr but they threat symptoms and they tell by response to steroids if we have this disease or not I think.Id eyesight probs and pmr could hardly get up stairs for 4 weeks.You should definatly get a second opinion if not satisfied its your right to do so.All the best Mick.

[Hidden in reply to Runrig01]

Hi Runrig,

Thanks for your comments. I will let you know how I get on. I hope your second opinion listens and you manage to get a diagnosis.

[Hidden in reply to Runrig01]

hi,im 49 years old and was diagnosed last november. the doc thought i had tonsilitis so i went a long time in pain.down to 8mg of steriod i have had a recent flare up and im back on 20mg but still not completly pain free. im intrested in your comments because i have had this pulse in my ear for months, i thought it was high blood pressure but this was not the case, i also get the shakes which im wondering if its the steriods, i find it hard working early shifts, and two teenage boys keep my joints aching !! best wishes moongazer.

[mickt in reply to Hidden]

Hi moongazer ,Ive been put on amytripelene for neuropathy ,pains in joints just today.My Gp and specialist nurse say may be vasculitic or diabetic ive both type 1 and gca pmr symptoms.It may be worth trying for your pains in joints.The Prednisilone does make me shake too im currently on 30mg daily ,been as high as 80.Cant help with your pulse ,may be tinnitus read on PMRGCANEE site ,have a look on google support groups available to you.Ive been off work fof 4 mth you have done well to continue.My boys are 25 and 23 .Hope things work out well for you,,allthe best mick.

[mickt in reply to mickt]

Im 50 so were close age wise sorry I forgot .

[jinasc]

Keyes

You wrote "The BSR diagnosis guidelines for GCA are very interesting in that they appear to have come in for criticism. For example they make no mention of jaw claudication which is pathogenic for GCA".

I do not know which guidelines you have read, but the following paragraph applies: .Page 2 Demographics of GCA (7,8) Symptoms, No 3 on the list Jaw and Tongue Claudication.

Here is the direct link: pmr-gca-northeast.org.uk/as...

[Hidden in reply to jinasc]

Hi Sambucca,

I was referring to the 5 diagnostic criteria that it quotes which were drawn up by the American Rheumatologists. You have to have at least 3 out of 5 symptoms, which include new onset headache, ESR over 50, positive TAB, age at least 50 or over and temporal artery anomaly.

[Hidden in reply to Hidden]

Hi Obviously, you are well informed. Do you have any dilation in your temporal artery? To be honest, biopsy would be an overkill (just my feelings on this). What would be the consequence of such invasive procedures? From what I can see, it looks like a huge scar left afterwards.

[optimist-ok in reply to Hidden]

Hi Omega. I have had the GCA biopsy, it took a while for the hair to grow back but there's no scar!