Advice please

[Trish21]

After reducing from 15mg to 9mg I was plagued with jaw stiffness and pressure on both temples. A trip to A&E and was advised to increase pred back to 15mg. This was 2 weeks ago and no real change in the jaw stiffness and weird sensation in the head. Should I now start to decrease pred again as increasing it has had no effect? I am trying to keep calm and not worry, I do not for one minute thing I have GCA but I do worry what these symptoms are. The pressure in my head is at times almost unbearable and was one of my symptoms before starting pred so I am at a loss what to do now. I feel very low and I know that this is one of the symptoms of PMR. The pred is keeping the limb stiffness and pain at bay and at 9mg it was fine, only the stiffness in the jaw and pressure in the head was a problem at 9mg and no better at 15mg, sorry to repeat myself but I really don't know where else to turn as GP's seem at a loss to know what to do with me. I have episodes of vertigo which are also very frightening. They last about 20 seconds but are quite severe.

[PMRpro Ambassador]

I thought you had a rheumatologist appointment made for you the next day? The A&E doctors weren't experts but did want you to see one. You need to see a rheumy and tell them about all the symptoms you are having.

[Trish21 in reply to PMRpro]

I was too unwell to attend. But take on board what you say

[PMRpro Ambassador in reply to Trish21]

If I had had signs of GCA as you did and the A&E doctors thought I needed to see a specialist next morning I would have moved heaven and earth to get to that appointment - including using 999.

You need to see a rheumy to know if this is possibly or likely to be GCA, We have told you repeatedly that a negative biopsy does NOT mean it isn't GCA and an eye specialist won't necessarily see changes to the optic nerve at the back of the eye. And things change. You may not think the rheumy you saw was reliable. You had the chance to see possibly another but then wasted the chance with him attending the hospital to see you. You have had 2 weeks to get a private appointment if that is what you have decided to do.

I understand the weariness, I really do. I too have spent 18 months waiting for something I was concerned about to be identified and dealt with, not entirely their fault, it too did not appear in the tests. The same with my husband. But if you don't see a doctor when you DO have the symptoms - you can't blame them when you don't get an answer.

If you think it may be dental - then go to a dentist. But please go and see someone when you have the symptoms. This will sound hard but you can write on here every day for the next 6 months - we can't do more than say what we would do. And WE would all have gone to that appointment. Or would be making another asap.

[Trish21 in reply to PMRpro]

Ok I get the message

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpros advice!

[ALeCount]

Yes, please do see a Rheumatologist and/or Opthamologist ASAP. You need to definitively rule out GCA. Even 15mg of Prednisone is still much lower than the usual beginning dose with GCA.

[Trish21 in reply to ALeCount]

I have been to see ophthalmologist, I have had a biopsy which was negative, I am now wondering if it is a dental issue. I just needed to know if this jaw thing is pmr related as opposed to gca. I did start my pred journey at 40mg as gca was suspected. I think a trip to gp is needed. I have no faith in my local rheumatologist at my hospital, I am looking into finding a private one

[ALeCount in reply to Trish21]

I’m glad to hear you’re pursuing answers. Good luck in finding a better Rheumatologist or a cooperative GP!

[PMRpro Ambassador in reply to Trish21]

If you have jaw claudication with PMR symptoms it is a sign the PMR may be progressing to GCA, affecting a different area. By definition, jaw claudication occurs only when the jaw is being used, in chewing or talking for example, and eases off when you stop doing the action only to return when you start again.

It isn't a case of I have PMR with jaw claudication - it is I have jaw claudication with other PMR symptoms and so that means it may be GCA you have. It must be checked out.

[Hidden in reply to Trish21]

My jaw claudication was my only highly noticeable symptom of GCA, which I hadn’t heard of. I woke up blind in one eye after a few months of it! PLEASE get it sorted! And FYI... My dentist didn’t suggest GCA; he suggested I need a mouth guard for grinding teeth at night. I tried to explain that it doesn’t hurt in the a.m., it starts hurting when I talk and the tongue cramping when I ate was ridiculous! Still recommended a mouth guard that I could only wear for 5 minutes, if that. I got a refund for it. Too late to get doc appts before blindness arrived.

[Hidden]

If I had the symptoms you mention....jaw stiffness, pain in temple areas, weird sensations and unbearable pressure in my head I would be doing a foxtrot off to the rheumatologist. I would be so scared I would lose my sight. Please, please get yourself checked out.

[Trish21 in reply to Hidden]

I have been down this road 2 weeks ago, I am so tired of being told that there is nothing wrong with me.

[Hidden in reply to Trish21]

But you haven't see the Rheumy'. Rearrange that appt asap.

[SheffieldJane]

Trish - you must persevere. There is nothing more important in your life right now - please! ( I totally get the weariness but there is too much at stake) A& E ?