Jaw Pain is unrelentless.

[Aleish]

13 days on 20 mgs. prednisone and no relief in jaw. Cannot chew. Assuming my dose will be raised on Weds appt. Should it resolve with higher dose? Very upset because it's worse today then it's been.

[Rimmy]

Hi Aleish

If you are feeling highly anxious, unwell and your symptoms are worsening - jaw pain being a 'classic' GCA symptom - it would probably be best to seek medical assistance more urgently. I would do this myself as I suggested in response to your previous post but obviously the decision is yours as nothing is 'black and white' in this situation and I am a 'better safe than sorry' person.

Best wishes

[SheffieldJane]

Wednesday is a while away. Can you contact your Doctor before this for advice? If GCA is suspected they will increase your dose 2 or. 3 fold. I had extensive heart tests when I was taken into hospital with jaw pain that remains unexplained to this day. Please act quickly for the reasons you know! Kind regards J

[Nethyman]

Hi Aleish

I would seek urgent medical attention. Contact your GP or go to A&E. Or indeed call NHS 24 for advice. Do not wait!

David

[SnazzyD]

Unfortunately nobody can make your diagnosis here and you need to see a doc. Emergency Dept is worth going to before Weds if you have eye symptoms and jaw pain especially if it is increasing and others have said this. If GCA is suspected then your dose needs to be much higher than 20mg before the inflammation is held and your eyesight is protected. If it was me, I wouldn't be hoping for the best, I would be doing something like I did with symptoms much less intense than yours.

[simoncla]

Hi Aleish

Don't expect good advice from your doctors. I got down to 8 mgs of pred before getting jaw claudication. Contacted my doctor immediately who told me it was nothing to do with GCA and to keep reducing pred. 6 weeks later and 9 kgs lighter I followed this website instead of my rheumy and raised the pred dose. The claudication cleared in several days.

[PMRandRA]

Unrelenting jaw pain is definitely a case for getting yourself to A&E. Even if it is not GCA, it should not be messed with in case it is GCA.

Please don't wait!

[Aleish]

Calls to opthamologist on Friday without proper answers. Here in Florida where I live it's a waste at ER. They are not able to do anything but call your rheumatologist. I called them on Friday and they were closed and at a meeting for weekend in Orlando. When you get an on call rheumatologist if you call the emergency line , which I did in past it was worthless. I have enough meds to up dose on my own. . They wanted me to go for biopsy but still never dosed me high enough. I knew I needed to see different doc. Actually had an appt last week and doc had to cancel me because of death in family and they rescheduled me to this week. They don't seem to know how serious this is. I just will up on my own to twice a day at 20 mgs and then when I see new doc, if he figures out from records that I did on my own I will just pretend I thought I was given the extra pills if symptoms got worse. The notes do say I need a biopsy. Last week I went to ER because of back pain radiating to under breast , which had to have been from this disease and they kept me for two days in the heart wing, The only good thing is they gave me a CT of my organs which included the aorta and it is fine. I'm seeing fine but eyes are like slits and puffy under. So thanks all for the advice and I will probably try and get through to the on call rheumatologist but if not given correct advice I know what I have to do. The docs can be tough on a person that takes it upon them selves to change a medication dose. I I have paid for this insurance even though I have Medicare for seniors but for complete coverage in my zip code we pay over $300 a month and still are not treated like we should be. As I'm getting more information I will seek the best I can find but I'm not in a big city area. I know more then the docs on this so far. Just hopeful that the next one is good. Just getting any other diagnoses besides fibromyalgia for years and feeling like I was going to die is what has been happening. Had to pretty much diagnose myself and then get confirmation. This is an orphan illness here.

[PMRandRA in reply to Aleish]

I am not medically trained at all but I do know that it is better to take Pred in one go for GCA. But I will leave the decision up to you.

A biopsy will most likely show up as not GCA because you are on Pred - any amount-! It should be done before taking the steroids.

so if a biopsy is suggested tell them that you know it is pointless at this stage and you don't want to be misdiagnosed and possibly go blind. They should have more respect for you if you know a bit!

🌺👍❤️

[SheffieldJane]

You sound like a very clued up , intelligent patient. It also sounds like you need to be, where you are. I think that your doctors would be more worried about irretrievable damaged eyesight than you taking extra Prednisalone, for carefully thought out reasons. Keep strong and let us know what happens.

I do know that Fibro suffers sometimes struggle to be taken seriously, my friend was one.

[PMRpro Ambassador]

So the ER can cope with a medical emergency that is a stroke or heart attack that ticks the right boxes - but not possible GCA symptoms presenting in a diagnosed PMR patient? Don't they have on-call rheumatologists?

[Aleish in reply to PMRpro]

Symptoms were different last week and my eyes were not the issue. They don't listen well and they had me convinced it had to be my heart and made me stay for heart issues. Yes, if site is failing they are supposed to get a rheumatologist to order prednisone iv. My issue this week is the jaw. That would not qualify for a prednisone IV as long as my eyesight was in tact.

[Hindags]

Hoping the doctor sorts this out for you.

[Aleish]

Took 40 mgs prednisone on my own and yesterday. Jaw better today and my panda eyes are lighter in color and no as puffy this morning. Test will be when I eat.

[camerashy]

I can sympathise Alaish

I had this problem and lost 1.5 kilo because I could not eat very painful..I had not been diagnosed then so I would have thought being on preds would have helped. I stilll get pain when I chew but not as bad. Good Luck