jaw ache,just tapered.

[Elbowpiece]

l have recently tapered form .65 to m6g pred and thought l was doing ok on 6.5 with minor niggles,so minor l can't describe them but l felt good enough to go for 6mg. Since being on 6mg l have not felt truly happy but hoped to stick it out until yesterday when l felt pain in jaw and today same left jaw when l chew.l tried to contact rheumy nurse but out of office until nine am tomorrow. Do l increase pred and if so what to.thanks in anticipation.Been on m6g 19 days.

[DorsetLady PMRGCAuk volunteer]

Is it the same sort of pain as you had pre diagnosis for GCA. and do you have any other symptoms?..

it may be GCA or it could be TMJ/TMD - see this- nhs.uk/conditions/temporoma...

I would be inclined to go up to 10mg overnight, and see if/how that helps, so you can explain to rheumy nurse in morning...

.. any chance of contacting GP this late in day, or failing that NHS 111... trouble is you don't have anything on bio that could help us really...

[Elbowpiece in reply to DorsetLady]

Thanks for super quick reply. My gca symptoms were extreme weakness, could hardly stand, rapid loss of weight and night sweats. Never felt jaw pain or temple. After 19 days of various tests all ruling out everything tested for had a PET scan at Sheffield and found LVV aorta. My walking is worse than a ducks waddle at times an energy consuming.

[Elbowpiece in reply to DorsetLady]

Do you mean adding 4mg to the 6 this morning or another ten mg.

[DorsetLady PMRGCAuk volunteer in reply to Elbowpiece]

As it's not 100% certain its GCA/LVV, I would just add 4mg to go UP to10mg... until you get an answer...obviously if it gets any worse overnight, or first thing in morning you may need to re-evaluate the situation...

..which is why I suggested calling 111.

[Elbowpiece in reply to DorsetLady]

Tried 111, never got through, still had pain, intermittently pulsing at various strengths. Rang rheumy nurse, left message, she got back at 4pm and wants me to have urgent extra bloods this morning at Chesterfield but l have a blood nurse come to visit me at home so arrangements have been made. Nurse thought l was on monthly bloods but they have been done only every 12 weeks or 4m so she talked about having them done every month.

[DorsetLady PMRGCAuk volunteer in reply to Elbowpiece]

Okay but what did she say about increasing dose? Or are bloods to be done first? What dose are you on now ?

[Elbowpiece]

Bloods to be done first. She did say they might increase dose but see what the bloods say. On 6mg at present. Pain not as bad but still there with swollen area.

[DorsetLady PMRGCAuk volunteer in reply to Elbowpiece]

That’s the answer I wound expect -doesn’t mean I necessary agree -but.. and what swollen area -don’t think you mentioned that before..