Does jaw claudication include cramps in the jaw? I have an appointment this week with my rheumy and I'm wondering if I should mention it? I've been having cramps in my back, legs, feet and toes. Not often but I realize, a bit too late, that I didn't drink enough water throughout the day. The occasional cramp in the jaw usually happens if I clench my teeth, so I avoid clenching. It's kind of weird so I thought I'd ask. It doesn't get tired when chewing or anything and I don't have any other symptoms so not sure if it is something worth mentioning to her or not?
This appointment will be interesting since I was supposed to get down to 7.5 mg by this time. I'm just tapering to 10.5 mg from 11.5 mg. I had a hiccup in the tapering so had to take a step back up for a bit when I went from 15 to 12.5 mg. I then tapered to 13.5 mg and have been going by 1 mg since. I haven't had a blood test since June 29, 2022 and I didn't get the CRP, she said it was ok not to and to continue tapering, even though the ESR was going up from the last 2 results. The CSR was also up and in the red zone on the last test taken. I think I should insist on getting those blood tests done before tapering any further, just to confirm they haven't gone up. Anyone's input on this would be greatly appreciated! Hope everyone is doing well and enjoying the last dog days of summer! Hugs to all!
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yes you should mention the jaw cramps to your doctor, just in case, even though it is not typical GCA jaw claudication. If I’ve got this right, try chewing gum for 2 minutes to see if the jaw gets more painful. That points to jaw claudication. The various cramps you are getting could be a sign of Magnesium deficiency. A supplement might help this symptom. I agree with you about your blood test results, although Pred will control the inflammation to an extent anyway. Good luck. Symptoms are a better guide than blood test results.
I used to get a lot of cramping in various muscles in my early days of PMR and my doctor suggested trying salty water (1/2 teaspoon in a glass of water). Once I got over my initial resistance to the idea, I found it really helped me. If it tasted OK then I drank it, but if it tasted revolting, then it wasn't needed and I didn't drink it.
I think it was HeronNS who suggested trying it by licking a little salt and seeing what it tasted like and keep going until the taste changed, progressing that way to find out how much you might need. Might be worth a try?
It may have been PMRpro who said that as we get lower in pred dose then a little more salt is sometimes needed too.
If the markers are rising that is a sign of the pred dose being inadequate to control the inflammation - continuing to taper will just make it worse and you could well end up back where you started. I do wish doctors understood how PMR works - it is a chronic disorder and requires management - the pred isn't a cure.
Jaw claudication is jaw discomfort/tiredness/pain that starts when you are using the jaw - chewing but even talking or singing can bring it on - and then resolves when you stop. A diagnostic tool is to chew gum at one chew per second for 2 to 3 minutes. Jaw pain is highly indicative of possible GCA although there are other reasons it can occur.
Have you tried magnesium supplements for the cramps? Pred makes you lose magnesium and many people have low stores in the cells.
Thank you everyone. It really is just cramping in the jaw not tired or pain other than what is caused by the cramp and only happens when I clench. For whatever reason, I have a habit of doing that when I am trying to apply pressure, like unscrewing a jar of pickles or clipping a difficult branch. I also was diagnosed with TMJ years ago in my 20s, partially due to all the dental work I had to have done the alignment of my bite was off. Since I had the most recent dental work done, it seems to have resolved itself.
I do take supplements for calcium, magnesium, and zinc in one and potassium in another. I only get the cramping when I forget to drink enough water. It doesn't happen often. I never thought about the salt, (although my sodium levels were good, last checked). It might be a good idea to check these levels again as well since I have been taking the supplements for quite a while now. I'll give the salt a try!
PMRpro-I still have to check with the pharmacist on the better quality magnesium. I agree with you on the tapering but haven't had a blood test since June. I will be asking rheumy to have these done & discuss with her about having them done at regular intervals. Although I am doing well at the moment, I'm not sure at what point the symptoms will show up and would be nice to have proof, if I'm headed in the right direction or should slow down a bit. I don't think she cares about anything but how fast I can taper. I think she thinks she's going to get me on MTX right away but I don't see the point of adding to my misery or having another drug that I could be on for years, when I am not having any side effects from the pred and there's no real proof that this drug helps PMR. All of the issues from the pred are either resolved or are getting better with the lower doses. I will know more Thursday and will keep you posted. Not sure I will mention the jaw cramping yet. I have no other symptoms related to that other than an occasional headache and I get those whenever the weather changes, big storms.
*****Sorry for the delay, I saw this morning that this didn't get sent so decided to wait and see what the Rheumy had to say today. She was pleased that I was down to 10.5 mg but wants me down further asap. She said by my next appt she would like me to get down to 7.5 mg or 8 mg minimal. Repeated the speech about being on high doses of pred being really bad and she would like to make sure I understand that I really need to taper down or she will have to add another medication on. My next appt isn't until Jan. I said that should be good if all goes well, I should be down to that by Dec. She sent in 2 prescription renewals, 1 for 1 mg, 1 for 2.5 mg. She also asked how I was doing, I told her I was a bit stiff and sore right now and when my cat wakes me up, he walks on the side of my leg, it hurts. I feel like I may be pushing to hard to taper at this point but I will keep trying. She told me her goal is to get me down to 5 mg and maybe stay there for a while! Surprise! I thought her only goal was to get me off of pred asap and if I couldn't do it fast enough, she'd put me on the MTX. I'm going to refuse it if she does try to get me to take it. I think she's using it as a motivator to get me to continue to taper. Really all it is doing is stressing me out. (My blood pressure was 144/84!Normally I am 112/72.) I'm not buying it but she can tell me she has to add it all she wants, it's ultimately my body and my choice, right? Also, I really didn't think 10.5 mg was really considered a high dose? According to info on drugs.com reviewed by Sally Chao, MD, 40 mg -60 mg is considered high, 7.5 mg -40 mg is considered moderate, 7.5 mg and below is low. So not sure why she is pushing that I'm still on a high dose? At any rate, I got better results than I thought would happen and I'm free to taper as I see fit for the next 4 months! Now I just have to get through the next vaccine without a flare!
I'd say above 20mg is high, but you are well below that. You will get to below 10mg when your body and your PMR is ready. And I do struggle to understand why she thinks that 10mg pred alone is worse than adding a heavy duty immunosuppressant that isn't guaranteed to work and has its own adverse effects to an only slightly lower dose of pred. She won't HAVE to add another medication - she can suggest or recommend it. You don't have to agree. Management of PMR should be a result of discussion and consent on your part.
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