Pain in jaw and neck

[Reedmaker]

I was ‘diagnosed’ with PMR in June this year, although have never seen a GP face to face..just 2 phone consultations following blood test results (inflammatory markers 80 apparently?). Put on 15mg Pred and now tapered to 9mg.

Have been struggling on, trying to pace myself, but finding the demands of my job (I’m a self employed musician and caterer) fairly hard to cope with due to fatigue. I have never had any major illness, haven’t seen a doctor in 20 years and have been lucky to be really healthy with loads of energy so this is devastating.

The pain has been manageable with only slight flare ups every time I have reduced, until the last few days when the pain in my jaw (both sides) and in my neck has been intense when the pred has ‘run out’..I.e. just before I take the next dose.

I have been taking it at night..2.30-3.30, but find that taking 6mg in the night and then 3mg with breakfast just about keeps the jaw pain away but wonder should I increase the dose for a bit. I was never told whether to take the whole lot in one go, having originally taken it two or three times a day, but reading your FAQ it seems that most people do.

The jaw and neck pain was how it all started in May, spreading to shoulders and hips/buttocks. Initially I assumed it was due to the trauma of major oral surgery to remove two impacted and infected wisdom teeth and two others under general anaesthetic in March. Maybe this sparked off the PMR??

I have found this forum really helpful and informative as trying to see a doctor seems impossible. When my father had PMR and Reynauds he had regular visits to a rheumatologist but he was much older than me (I’m only 61…today!).

Any thoughts really welcome. Thank you for this valuable resource. It’s a lonely place at night in pain.

[123-go]

I am shocked that you have never seen a doctor! Who is managing your illness? Were you ever pain-free on 15mg?

PMR is treated initially with between 12.5 - 25mg Prednisolone often depending on the patient's weight. Your continuing symptoms strongly suggest that your starting dose wasn't sufficient to manage the inflammation in your body and to reduce the dose while you are still in pain is a big mistake. Yes, it is difficult these days these days to get appointments but you have to be your own advocate and you do have to insist on seeing your GP who I feel should refer you to a rheumatologist now. If you don't get the right response I would suggest you change your GP.

Please understand that I am not criticising you. PMR is something unknown to must of us when diagnosed but the disease requires careful management and regular appointments so I urge you to be your own advocate. If you have enough Pred it might, for now, be beneficial to return to 15mg for now and I would take it as a whole dose at around 8am with breakfast. Do make a call to your GP surgery and stand your ground if the receptionist is difficult. If that is the case, I personally, would say that I will make a formal complaint. You shouldn't be suffering like this and having no guidance is very wrong.

Who knows if the dental treatment brought on PMR? Possible but there is no definitive answer.

Others will be along to advise. I do hope that you get this sorted out soon. Keep in touch.

[Reedmaker in reply to 123-go]

thank you 123-go. In answer to your question, it seems I am managing my illness and not very well. I will definitely be back to the surgery. Ours is a small rural practice and apparently recently down to one part time GP so that is probably why it’s so hard to get a face to face appointment. However, I think there is now a couple of others working there so I will try and see someone different. It seems a ‘one size fits all ‘ approach is applied and they don’t do follow up blood tests or refer to a rheumatologist.

[123-go in reply to Reedmaker]

Thank you for replying, Reedmaker. You are in an unenviable position and I can understand why you feel lonely in coping with your illness.

I have attached a link below which is from a US site and a private provider of which you will know. A lot of the information corresponds with the UK view but in both countries there are misconceptions, eg, PMR lasts around a year…this is rare. I would urge you to print the page and take it to your doctor and will be interested to know the outcome:

mayoclinic.org/diseases-con...

In the meantime, I feel a visit to your dentist will be useful as he/she may be able to tell you if your jaw pain could be connected to the work you had done previously.

If it’s possible, maybe you could lighten your workload for a while; rest is very important and helps in managing inflammation.

I do wish you all the best in your brave attempts in coping with your illness. You come across as a strong woman who is determined to do the best you can for yourself 🙂. Please keep in touch.

[DorsetLady PMRGCAuk volunteer]

hi,

Welcome and best wishes for your birthday….. definitely not good enough from your GP, you really do need to see one, and get some proper advice….on many fronts.

Would say you have gone below the dose you need on a daily basis, and first thing is to get things back under control so an increase in dose in required.

I am concerned about the continuing jaw pain though, that does need checking to see if it is PMR (GCA) related or down to TMD/TMJ see link- nhs.uk/conditions/temporoma...

Is it worse when eating, and stops when you stop chewing? The fact it returns when you think your dose of Pred is running low indicates illness related.

If you are not being monitored by GP, does that mean you still have original prescription of 15mg per day? If so, might be worth returning to that temporarily until you get an appointment, and as already suggested by 123-go in one dose..

If you haven’t read this then please do. ..

healthunlocked.com/pmrgcauk...

I might be worth trying to ring 111 as it’s weekend, and getting yourself ‘into the system’ ….but definitely contact GP next week.

[Reedmaker in reply to DorsetLady]

thank you DorsetLady and for the birthday wishes. I managed to have a relatively pain free day and took an extra 1mg which meant I went to sleep fine. Now awake 5 hours later and the jaw pain is back. It doesn’t become worse with eating, but does restrict mouth opening and my glands feel a bit swollen. Have re-read your article and checked the TMJ article. I think I have enough 5mg tablets to go back to 15 for a few days until I can see a GP.

[DorsetLady PMRGCAuk volunteer in reply to Reedmaker]

Okay, sound as if jaw pain is helped by Pred, but not typically GCA ish which was my concern.

If glands feel a bit swollen then that would make me think of an infection more than PMR - so perhaps paracetamol may help.

Have to say, I’m a bit flummoxed as to what it is.

Please do let us know outcome of doctors appointment.

[Reedmaker in reply to DorsetLady]

Thank you. I took paracetamol in the night when I woke at the normal 1.30 and it took the edge off the jaw pain but it’s still there. Now taken Pred. and it should calm down in a couple of hours

I’m worried about GCA as I’ve got intermittent tenderness around my head and behind the ears but I could be imagining it. Also a sort of ‘fizzing’ in the head which I’ve had since the start of all this

I’ll keep you posted. Thanks for the support.

[DorsetLady PMRGCAuk volunteer in reply to Reedmaker]

Please do -ears can be affected by GCA and you’ve mentioned tenderness -but see you’ve also replied to PMRpro regarding jaw claudication.

As I said, bit flummoxed-but needs sorting.

[Reedmaker in reply to DorsetLady]

Well I finally got to see a doctor face to face on Wednesday after a very unsatisfactory phone call from a ‘health professional’ who told me to take cocodamol for 2 weeks. I refused. You’re right, you have to insist on seeing a doctor, and she was very thorough. The good thing was she admitted that she was a bit flummoxed abut my jaw pain and the difficulty in diagnoses and was constantly referring to the NHS guidelines on GCA while she talked to me. Anyway, she decided to put me on 40mg Pred I think as a precaution and refered me to Rheumatology as an emergency. Hoping to be contacted within 2 weeks. The relief I felt just to be acknowledged was huge even though not thrilled to be on such a high dose. It knocked the pain out that very night, and although I’m not sleeping, and very tired, it seems to have done the trick. Hopefully it won’t be for too long and they can get to the bottom of this. Unfortunately I’ll probably not see this GP again as the practice seems to have different ones there all the time with hardly any permanent GP. I think she was very frustrated with the whole setup. Also couldn’t get a blood test for 13 days!….if the rheumatologist appointment comes before this I will have to make a fuss again.

Thank you again for this forum…it is a wealth of comfort and information in the night!

[PMRpro Ambassador in reply to Reedmaker]

"and refered me to Rheumatology as an emergency. Hoping to be contacted within 2 weeks"

GCA is a medical emergency - like a heart attack or stroke. Hope she doesn't refer them on a 2 week pathway! It is called referral to the ED ...

[DorsetLady PMRGCAuk volunteer in reply to Reedmaker]

Well it’s a start, but obviously if the 40mg doesn’t help and you still feel same pains you need a trip to A&E(ED) -as PMRpro says should be treated as proper emergency.Hopefully won’t be.,

[PMRpro Ambassador]

Happy birthday!

What is the jaw pain like? Can you describe it more - what causes it, what makes it worse, what makes it better? What other symptoms other than obviously feeling ill - fluey?

To be started at 15mg which is the low end of the range for starting dose in June and to already be down to 9mg is a very fast taper - in fact, more a reduction than a taper (there is a difference). And I am absolutely appalled no-one has wanted to see you f2f - I have no such problems here in Italy so what their excuse is in the UK is beyond me to fathom.

[123-go in reply to PMRpro]

Could well be that the GP in question knows little to nothing about PMR.

[jinasc in reply to 123-go]

That is no excuse for not seeing a patient, believe it or not, that is why they are in that job. Even if he/she knew nothing the NHS net is there for all to use.

I would be putting in a stiff letter to the Practice Manager and if no result the Clinical Commission Group. Oh and then changing my practice.

[123-go in reply to jinasc]

Of course, jinsac, it's no excuse which is why I suggested that if Reedmaker manages to get an appointment with her GP and isn't satisfied that she writes to the surgery with a complaint and that she changes her GP. It's a fight that no suffering patient should endure.

There have been posts here when members have printed out information for their GPS to read: one member recently said her GP took the sheet she'd printed off her and immediately put it to one side and continued in his own way. Shocking!

[PMRpro Ambassador in reply to 123-go]

Very likely - but they should know enough to know that a patient requiring pred needs to be seen and monitored.

[123-go in reply to PMRpro]

I agree. I'm not condoning the GP's non-action but pointing out what is a familiar problem on the forum. I did say in my reply to Reedmaker that she needs to be seen regularly and monitored carefully. If her GP won't do those things for whatever reason she needs to change her GP as advised.

[Reedmaker in reply to PMRpro]

Thank you . It’s like a bad headache in both jaws with neck stiffness especially on the right. I’m definitely not grinding my teeth and the pred makes it go away but I know it’s there underneath.

[PMRpro Ambassador in reply to Reedmaker]

Is it worse when chewing/talking?

[Reedmaker in reply to PMRpro]

No it’s not. Doesn’t seem to be related to either.

[PMRpro Ambassador in reply to Reedmaker]

That's a positive!