Oh joy, some new issues! Never boring, that’s for sure.
I’ve been on 40 mg, briefly up to 45, pred since the first week of January this year for PNR/GCA, supposed to reduce now to 30 according to rheumy.
I never had jaw pain with the GCA, my headache was occipital, back of the head, plus systemic and PNR symptoms.
I’ve been noticing some jaw pain right in front of my ear lobe, the hinge of the jaw, sometimes when chewing tough food, “niggles” of a little pain there other times. My face really got swollen in the past 2 weeks when I raised raised my dose and I’m wondering if this is causing the problem. Dentist has said before that I grind my teeth sometimes. I’ve read about this as a marker for GCA, but I never had this when diagnosed, could it be a new symptom of a flare? I’m due to get blood tests monday for inflammation markers.
Why does this always seem to happen on a Friday?? I had a stressful week with medical tests, big grocery shopping trips, (yeah that counts as big stress now!), some difficult emotional conversations, financial stress, conflicts with my son and my sister....). Rested and even took a nap yesterday, slept better but symptoms still here.
Also does anyone get locked fingers, spasms, toes affected sometimes too, “bumpy” tendons, with pred or is this part of the autoimmune issues. My father had Dupyton’s (spelling?) syndrome where his fingers contracted and had surgery for it.
It’s my drawing hand! It’s started to affect my drawing and painting sometimes and this is scaring me... that’s how I’m surviving all this.
Thanks for being there everyone.
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Mstiles
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Yes we’re here for you Mstiles, don’t worry. There will be other GCA sufferers along to give you the benefit of their knowledge and experience. I “ only” have PMR but I’ll give it a shot.
Firstly 40 mgs is a relatively modest start dose for GCA, 60 mgs is more usual. You simply may not be on enough to control the inflammation. You need to discuss this with the doctor because as you know it’s dangerous for your eyesight.
Secondly, you have had a stressful week in spite of your best efforts and GCA /PMR simply feed on stress. Your sister and son need to give you a break, you have a serious systemic disease. Financial stress is a killer and somebody needs to help with the big grocery shop. Or could you shop on- line. Once you get into it, it’s quite addictive and I don’t impulse buy so much.
I think we get sick on a Friday because the doctor is closed, but A and E isn’t and any GCA episode counts as a medical emergency.
I think the locked fingers and toes are probably unrelated to GCA but you need advice particularly with your family history.
The swollen face is a well known side effect of steroid use. We all lament the “ moon face”. It won’t cause the jaw pain. That is more likely to be the progression of GCA. I wonder if raising your dose would deal with this symptom until you can see your GP?
I hope this is of some use. I expect DorsetLady is either in bed or out on the town these days more like. 💃🏽 I am sure she will have some thoughts for you, when she sees your post. Take care, if in doubt, call an ambulance.
Hello Mstiles, I too have GCA and having read all the research papers suggested and posted by PMRpro I understand 40 mgs is an acceptable starting dose if you do not have any visual symptoms.
I also have temporomandibular joint pain both sides and my dentist is advising me about this. I am using a gum shield at night to help me stop clenching my jaw.
I am not saying this is what you have but it might be a possibility.
I also know the steroids affect our tendons in some way, I can't quite remember at the moment. They have certainly affected my hands and my fingers lock, as I have been able to reduce the steroids this has eased. My skeleton does appear to move around inside my body without my permission, little brighter.
Your symptoms might of course indicate an increase in inflammation but hopefully this will give you some other things to consider until our resident expert is available.
“I’ve had a stressful week” probably gives you the answer!
Like Jane would say fingers/hands probably not GCA, but patients on here with PMR do sometimes mention problems.
Jaw etc could be because you’re grinding teeth, and also could be tension if you’ve had a bad week. However, not very happy about niggles when you eat; if it stops as soon as you stop eating that could be an indication of GCA - not always, but you do need to rule out other things.
Your bloods tests may well indicate an increase in inflammation, it really depends how long you’ve had the symptoms, the difference in the blood sometimes takes longer to show.
Also 40mg is the minimum starting point for GCA, and as you’ve already had to increase once, I would say that dose was not enough to get to grips with things initially, and any additional hiccup will just add to your problems.
If it were me I’d be inclined to take an extra 5mg over the weekend and speak to doctor on Monday,even if it’s just a telephone consultation.
Meanwhile, as Jane says if it gets any worse, or you’re really worried off to A&E.
Hi Mstiles, I noticed when I was working a lot on my paper mache' sculpture ("Divine Gintervention") my hands were cramping up, and when they did it looked just like Dupuytrens! Hurt like hell! I had to massage them, to get the last two fingers to release.
Around the same time I was getting deforming cramps in feet and calf cramps. I got some Magnesium (as suggested here) and although it still happens sometimes, it's not as frequent as it was. ...although I'm not paper mache-ing either!
Also, sorry you had such a stressful week... When it rains... we get soaking wet don't we? : )
Thanks mami. Yes when my fingers froze up while I was drawing that wasn’t fun, have the leg/ankle cramps going on too, more magnesium for me. We can’t let this. get in the way of our art. 🎨
A nice warm water dip for your hands might help and spend some time rubbing with moisturiser. I have IS and my hands seem to be stiffening with diabetes. The weather can impact them greatly as can overuse.
The swelling at the temple happens if I have a few stressful days. It's always on the right for me and I have had tmj on that side. I too wear a bruxism guard at night -waiting for dental school to provide splints. That causes pain on chewing (Or extended singing!) But it sort of aches once I stop.
That said I agree with others THat A&E is there and if you have any visual symptoms then pred and hosp advised I am sure.
I have seen a study where they used chewing gum to test people with GCA. Google chewing gum and GCA. I will see if I can find the reference again.
Try and keep your jaw hanging open today- every time you remember check and see if clenched.
If it is muscle spasms - you could try taking magnesium supplements in the first line. That is the first thing the doctor would say here in Germanic Europe (sold in EVERY supermarket!). It was muscle spasm that made my hands lock when holding something fairly small - and it happened with PMR alone but being on pred upsets the balance of calcium and magnesium in the body as it makes us lose more and that is why we need supplements.
And I agree with the rest of them - too much stress and not enough pred to cover it. No reduction - and if anything, if it doesn't improve asap with the weekend and less stress, up not down!
Jaw claudication. It was awful in the first few months of GCA. Especially for a devout foodie like me. Everyone else had finished their meals while I was still trying to manage the next mouthful. Gave up. Went on mushy foods. Ugggh!
It's a definite symptom of GCA, blood flow to the jaw has been reduced. Don't worry. With prednisone, it will go.
I noticed spasms in my feet & legs that woke me up, requires me to stand & walk to get rid of it occurs when decreasing the dose. I also can get a spasm in the fingers in my hands that require me to pull my fingers into a relaxed position. I really think this is all related to the changes that occur from the prednisone reduction or just what the prednisone does to the hormonal balance that our bodies would normally regulate.
Jaw pain is part of my GCA & finally, of late, has been rarely occurring. I'm on Prednisone for a year & just down to 16 mg/ day.
Thank you Nanjean, those cramps are exactly what I was having. I had some before, but not this severe. Hard to tell what’s going on as I had reduced from 45 back to 40 where I’ve been for 2 months. Only took 45 and then 42,5 for a week. Then back to 40 b Then some jaw pain showed up, not bad, which I never had before so I freaked out thinking it was GCA staring to act up. I think I panic too soon but it’s hard not too with this disease.
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