Aching face

[Lealass]

Diagnosed with PMR in March 2023. Started on 15mg Prednisolone and got down to 12mg in July but not able to go down further. Pred relieved most of my symptoms and allowed me to lead an almost normal life with not too many side effects. Since then, I seem to have gone backwards and had to return to 15mg. Have finally seen a Rheumatologist last Dec and have been started on Methotrexate and Folic. Rheumatologist instructed me to go to 10mg. My symptoms have increased and I am now suffering from a moon face which is aching, as are my gums. Any advice or observations please?

[SnazzyD]

Hello, the moon face is a normal and temporary reaction to having lots of corticosteroids in your system. It makes the body shift fat to the face, neck and around the torso. It goes as the dose drops but we often complain about it when we have it. Some people do find it uncomfortable. When you say your gums hurt, do you mean the skin, inside the gums or the teeth or both? Pred can cause dentine hypersensitivity; I had that quite badly, though it isn’t clear from your description if that is what it is.

However, you say your symptoms are worse. What are they?

[Lealass in reply to SnazzyD]

Hi! The Pred is not controlling the symptoms as well and I have more pain in my upper arms and not walking as well either. Just feels like the flesh of my gums is swollen.

[SnazzyD in reply to Lealass]

Pred does make you more prone to infection. Might be worth getting a dentist to check them.

By the way reducing salt helps the Pred swelling generally.

[cycli]

I think your rheumatologist had you reduce too quickly and you probably need to up your dose. Sadly many rheumies don't understand because they don't feel the pain.

[Lealass in reply to cycli]

I don’t want to fall foul of her. Perhaps tomorrow’s blood tests may reveal something. I don’t actually have an appointment with her till July but guess the clinic will be in touch.

[cycli in reply to Lealass]

Don't worry about that. She's only in a job because of people like us. She works for you not the other way around.

[Grammy80 in reply to Lealass]

My face used to ache and my jaw would hurt when I chewed. I'm happy to hear you are having bloodwork done and you can see what your CRP and Sed rate are. I'd get in touch with the clinic if they don't call you. My best💞

[Koalajane]

if you are leading an almost normal life I hope you aren’t doing too much.

I think a chat with your rheumie might be needed and please don’t reduce too fast.

[PMRpro Ambassador]

There are 3 possibilities here I suspect.

1) You needed to start at 20mg before trying to taper the dose. 15mg is towards the bottom of the range for starting dose and isn't enough for many patients to clear out existing built up inflammation before then looking for the dose to manage the new daily addition.

2) You have been trying to do too much - and once you have developed DOMS (delayed onset muscle soreness) it can be very difficult to get over it, especially if you keep doing things and making the discomfort up. Your comment "almost back to normal life" raises red flags for me.

3) This isn't PMR at all - it might be LVV or GCA or it might be something else with a polymyalgic onset.

Just putting a patient on MTX does not mean they can immediately start to taper the pred - it takes a couple of months at the very least before it starts to take effect, to tell you to drop from 15mg that almost worked but not quite down to 10mg was likely to achieve this result.

[DorsetLady PMRGCAuk volunteer]

Totally agree with PMRpro - particularly comment 2.

[cycli]

take it from me Lealass, you can't get back to your normal life. That's what we all dream of but it can only be a possibility once you are in remission and clear of pred. AAA accept, acknowledge and adjust. Until you recognise that the condition has control not you there is no "normal".

[Missus835]

As I've had moon face for quite awhile, I find that I do have more pressure on sinuses and sides of nose. Not painful, but stuffy. I also have acute TMJ/TMD which can make the jaws or face ache. Worth a trip to your dentist. Also moon face is getting smaller with reduction in Pred.