Jaw stiffness - GCA or pred side effect?

In the last month, I've noticed some jaw stiffness and increased headaches. The headaches are not consistent in location and come and go. It seems to be more common between mid morning till bedtime. I alter mornings with 15mg of prednisone one day and 10 mg the next. These symptoms don't seem to trend with the dosage of prednisone. If anything, it seems as though the tightness is worse on the 15 mg days (but difficult to tell). However, it does seem to trend with days of bad diets, stress, not hydrating properly and/or overdoing it. The symptoms seem very mild most days (in fact some days there are no symptoms), but it quite noticeable at times. I tried Poops suggestion for jaw claudification test by chewing gum for 3 minutes with no pain. So, I guess it really isn't considered jaw claudification..

Does this sound like GCA symptoms or possibly some side affects of prednisone? Maybe hydration problems as I have always had some hydration problems?

I understand there are overlapping symptoms between PMR/GCA. I was diagnosed with PMR first week of April 2019. I have no scalp pain or tingling sensations and my PMR pain is nearly gone at my current prednisone dosage. PMR pain was always worse in the early morning. While these odd jaw tightness/meandering headaches are never in the early morning.

[DorsetLady PMRGCAuk volunteer]

Although you say the symptoms don’t seem to correlate with change between 15mg and 10mg days I wouldn’t have thought it was doing your body much good. You are taking 50% more medication on the 15mg days - that must make your body react in some way.

What’s the thinking behind it?

Plus it sounds as if you are still trying to do too much - you do have a serious underlying illness - and although you don’t want to stop doing things, you must be sensible about activities.

[Hidden in reply to DorsetLady]

Thanks for responding D L. Dr recommended the 10 - 15 mg alternating days. Actually, I’ve learned from my previous mistakes as far as overdoing it. I am really going easy on myself as far as overdoing it.. I typically only walk and light swim. I found that’s the best combination for me. I am getting the feel for this sickness. I just don’t understand this jaw tightness and headaches. It could even be tension induced by the prednisone? Also, D L, if I started losing vision, would I take 60 mg of prednisone on the way to hospital? I am not having vision problems, but would like to know if that would be correct thing to do on vision problems? I’ve not noticed any pmr symptom changes by alternating the Pred dose for two weeks. Actually pmr symptoms continue to improve. Am actually excited on how much better the pmr is feeling.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

If you tried the chewing gum test with no ill effects then I would be inclined to say it’s probably not the onset of GCA. Another plus is no visual problems.

If you do have visual problems then a one-off dose of 60mg would help, but it’s not something to take taken lightly.

Where are your headaches? As you say could be due to dehydration - do you notice a difference when you are well hydrated?

Quite a few people with PMR seem to have jaw problems - have search for TMJ - here’s a start -

mayoclinic.org/diseases-con...

Have to say I’m still not convinced about the Pred regime though - but if it’s not causing problems at the moment - then continue. But it may be more problematic to follow such a regime as you get lower.

[Hidden in reply to DorsetLady]

Thanks, D L . I really respect your thoughts and insights. As most other people with pmr, we seem to be always looking for clues on how your body is reacting to med, diet, rest, stress, and exercise. To make things more complicated, throw in the possibility of gca with a different med regimen and overlapping gca and pmr symptoms. It’s really tricky as nobody wants to lose vision. I feel so bad for the people that have succumbed to this problem. But, in all honesty, I consider people like you and pro and poops angels set on this earth to educate people on these sicknesses. Again, thanks for your valuable input and opinions.

I questioned the dr. On the med regimen, I tried it out and had troubles the first few days, then there were no problems. Not sure what the rest of his tapering regimen will be but I know what would be considered normal after learning on this site.

Again, I thank all you moderators and people with your valuable insights and opinions. I am sure many others have the same thoughts

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Thanks - I only had GCA not PMR- but as you say one is enough!

And I’m pig-headed enough to think (hope) my advice means no one has the same GCA journey I did.

[Hidden in reply to DorsetLady]

Headaches feel eerily similar to what I refer to hydration headaches that I’ve had for years. I sometimes wake up at two in morning to get water and usually subsides by 0700. The headaches are sometimes right temple, left side, in the middle. They usually are short term. However, every once in awhile they last for 4 hours. They seem to respond to ibuprofen. It just feels a little different with the jaw tightness. Plus I don’t think gca induced headaches would respond to ibuprofen. But not really sure. My hydration problems is a different problem I’ve never been unable to overcome. Had it for years. I drink lots and lots of water. I think it’s more of an electrolyte problem. But that’s something not this forum should respond to.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

You’re correct - GCA headaches do not respond to ibruprofen.

Think you need to look elsewhere for answer.

[PMRpro Ambassador in reply to Hidden]

It is unlikely that GCA would respond to ordinary painkillers so that may make you feel less worried.

[Hidden in reply to PMRpro]

Thanks . I tend to worry myself to no end for no reason most of the time. Good to know gca temple headaches don’t respond to ibuprofen

[PinkertonCat in reply to DorsetLady]

Sorry to say I have not heard of the chewing gum test..and I don’t chew gum, but I would like to take the test. Would you kindly illuminate me? Thanks,

[PMRpro Ambassador in reply to PinkertonCat]

It is felt that the action of chewing gum will elicit jaw claudication within 2 to 3 minutes if there is reduced blood flow to the jaw muscles. The concept of chewing gum provides a test that can be carried out by the doctor in the context of a clinical examination - no food required - as it is a relatively quick effect. If the patient can chew for longer it means that particular symptom is not present. No doubt it was thought of by an American since such a high proportion of the population seem to permanently have a wad of gum on the go!!! If they walk in chewing - the chances of jaw claudication are minimal.

[DorsetLady PMRGCAuk volunteer in reply to PinkertonCat]

From university of Sydney research -

Save Sight Institute researchers have developed a straightforward ‘chewing gum’ test designed to unmask this important jaw symptom. By chewing gum at a rate of one chew per second the test can reproduce a patient’s telltale pain, prompting further investigation with a blood test and an arterial biopsy to confirm diagnosis.

In a letter published in this month’s New England Journal of Medicine, researchers presented two cases where the chewing gum test allowed clinicians to better characterise jaw pain, confirm a diagnosis and successfully treat both patients.

[PinkertonCat in reply to DorsetLady]

Thanks PMRpro and DorsetLady. I will ask my rheumy if she has heard of this. I chew gum for my ears when I fly and I definitely had jaw pain last year. Hmmmm.

[PMRpro Ambassador]

I'd be looking to cut my tablets or get 2.5mg ones and balance out those dose swings - that is a BIG change in dose, which ever way you are going. Your poor body won't know where it is.

I found after a few challenges with the new lower dose I stopped feeling worse on those days and eventually felt worse on the old higher dose days. At this level I'd never suggest to anyone they tried dropping 5mg at a time, even using the slowest possible version of Dead Slow

[Hidden in reply to PMRpro]

Yeah that’s a great point pro. Seems like I am bouncing up and down day to day. I am going to start splitting tablets and normalize it. As Sheffield Jane thought my body may be freaking out with the med change causing some undo problems

[Hidden in reply to Hidden]

Both sides of my jaw have ached from TMD. Even when I don't think I have significant pain I find movement or exercise can cause an achey jaw because of clenching my jaw which seems to have become habitual from pain.

At Xmas I was doing more physically, chatting and laughing and singing with family and eating different kinds of food than usual. By day 3 it was like i couldn't chew for more than a few mins without pain. It ached for about a week afterwards!

Make sure you consciously open your mouth slightly every time you think of it. Try not to open your mouth wide even though it feels like you need to. You probably need to rest the joints and muscles. I know I am in for pain if my left side of my jaw stops clicking.

[Hidden in reply to Hidden]

Thanks poops! I just may be having this tmj . I will research it some. Sounds reasonable.

[SheffieldJane]

I suspect that your body is confused with the swapping between 15 and 10. What are you hoping to achieve with this regime?

I would honestly return to 15 mgs in the early morning and once things had settled , I would taper by 1 mg a month. I think PMR alone can produce horrible heads etc.

[SnazzyD]

I suspect that the reason you are worse on the 15mg days is because you are getting withdrawal from the 10mg day; it has a delay. I’m not sure why this method is thought to be better than a small drop at a time so you know when a dose is too low with much more accuracy.

[Hidden in reply to SnazzyD]

Thanks snazzy! I intend to fix that problem. You guys are correct. Jumping up and down every other day makes no sense

[HeronNS]

If you drink plenty but still appear dehydrated, check your sodium intake. You may find, as I did, you need more sodium if your diet is a very low salt one.

[Hidden in reply to HeronNS]

Yeah, I've found trying to balance sodium, water, and potassium is very difficult for my body for some reason. Much like trying to manage PMR. The prednisone along with PMR seems to have thrown my normal hydration management techniques a curve ball. With the temps 90-100 deg plus high humidity everyday, hydration management is tricky for me and my pmr... lol