Ever since being diagnosed with PMR more than a year ago, I've been scared of getting GCA. After 16 months on prednisone, I have finally managed to get down to 7 mg of prednisone and my CRP and ESR are finally normal. However for the past two weeks I've had jaw issues. I can't call it jaw pain really; it's more extreme jaw fatigue. By early afternoon every day, my jaw is so tired, somewhat achy, and actually trembles some. Both sides are affected. I have not had headaches or scalp tenderness or any vision issues.
I'm thinking it's not GCA without these other types of symptoms plus I would think my inflammation markers would be elevated? However, I still feel nervous since I've never had any jaw issues and there is nothing new in my life to cause it. I have a call into my rheumatologist but she's not getting back to me like she usually does. Any thoughts?
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Navion
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Just that I had PMR for 4 years+ and I shared your fears. My husband now says I was terrified. Maybe I knew at some level that GCA was operating alongside my PMR. It was difficult to taper because I felt unwell. I was given a specialised ultrasound scan of the head neck and armpits. LV-GCA was spotted in my left armpit, this could easily have gone undiagnosed and become more problematic, I was down to 3 mgs. My symptoms were non specific. At some level I feel relieved, the worst happened and my eyesight is safeguarded. I remember ages ago, feeling as if I couldn’t be bothered to chew. A lot like you describe. Only your Rheumatologist can help you, keep banging on her door. If you cannot get help there, then for safeties sake go to A&E. Good luck!
I totally agree with SheffieldJane that you must not delay in seeking advice from your rheumatologist or emergency department. I also understand your anxiety: I've recently been diagnosed with LVV/GCA and am waiting for my rheumatologist to contact me with a plan on how to proceed, but once you know for sure what is causing your jaw problem you will accept the diagnosis and deal with it. I'll be thinking of you.
30 mgs, then up to 40 mgs. ( PMR symptoms). I was prescribed Tocilizumab and found it easy to reduce to 10 mgs. I am not qualified to recommend this drug though as I am experiencing constitutional symptoms still. I have developed steroid induced diabetes and hypertension that makes coming off Prednisalone ( that has served me well for 4 years) imperative.
I echo what the others say - to go to A&E if you get no joy from your rheumatologist. You can't be expected to risk losing your precious eyesight.
I used to think I was very unlucky to develop GCA and PMR within a month of each other, but now realise that there was a certain advantage as I didn't have to worry and look out for possible symptoms of the ''other'' condition.
I’d describe my GCA jaw as being just knackered and I couldn’t be bothered to chew. Later on I suffered TMJ and neck muscle problems which, although did mimic some GCA pain symptoms pretty well, they never gave me that feeling.
What is your tapering regime Navion and what does LVV stand for ? Like you, I also feel fatigue in my jaw on some days and wondering if it's anxiety due to the worry of GCA, so we tense our jaws. You'd know the different between that and the discomfort of jaw and GCA. I was diagnosed with PMR Dec 2019, I managed to get down to 8 mg then the GCA kicked in. Jaw claudication, tender head and back top teeth ached too, but no headaches. Immediately put on 40 mg, that I now realise my rheumy tapered me far too quickly by 10 mg every 2 weeks. However, during this year I've only had to increase the Pred for a few days to sort me out again. Since the 20 mg mark I reduced by 1 mg every 2 weeks, once I reached 11 mg I'm going much slower. Currently on 10.5 mg for a month and will continue this regime until I hopefully manage to come off them end of Summer 2021. So being extremely lucky with no 'flare up' and worse no GCA I'd have managed to come off the Prednisone in just under 2 years. Won't hold me breath, but must try and remain positive for my outcome. The side affects of Pred have been far worse for me. Dark mood swings, very teary, the shakes (which I hate and have every day) eye issues with high pressures, puffy eyes, weight gain and can't control appetite (although that's getting better as I reduce) hair and nail issues, thin skin and bruising and numb toes. But the Pred do seem to be doing the job of keeping the pain of PMR at bay. I had a blood test yesterday ready to see my rheumy on 5th Oct....fingers crossed this appt won't be cancelled due to virus.
Regarding tapering, it's been really slow. After being stuck at 9 mg for nearly a year, I was put on methotrexate. It knocked my inflammation down and I've been able to reduce slowly. I did the dead slow method, reducing from 9 to 8. Then I did the DSM from 8 to 7.5 and 7.5 to 7.
Not everyone gets headache - or indeed any of the "typical" GCA symptoms, including raised blood markers.
What is the jaw problem like when you chew something? Chewing gum at one chew per second for 2-3 minutes is suggested as a diagnostic tool by a research group in Australia.
Most of my food is pretty soft so it's hard to tell. However, when I tried chewing a pretty hard and chewy protein bar. I didn't feel like I was going to get through it.
Thanks for all the comments. My rheumatologist got back to me and thinks it may be due to tapering. She said to increase to 10 mg for 3 days. If my jaw problems don't get get better in that time, she will be more concerned and we'll work on next steps to rule GCA in or out.
Anything else, like a worsening of the jaw claudication, or an unusual headache, or any visual symptoms. Treat it like you would a heart attack or stroke and seek emergency treatment immediately.
I've been dignosed as Horton then GCA. I've had my life long PR symptoms (pains in the back) without anything alse than discomfort and some visit to the chiropractor.
Horton and GCA were new to me! Having headache lasting many days and painful jaw on right side being unable to fully open the mouth while eating a banana were also interesting experiences! This disapeared after a few days on Prednisone 40mg.
Being on Prednisone and Tocillizumab (Actemra) since 2 months I managed to tapper down Prednisone fast. Faster than planned by the doctor. Today I'm off from steroids since one day.
I experimented the side effects of Prednisone and Tocillizumab. Mainly unsustainable nervosity and insomnia for Pred. Tocillizumab is giving me fatigue, abdominal swelling and pain, increased blood pressure.
Sure the inflammation is under control. Now it is a question of balance benefit/risk.
I'm searching to find another way to control inflammation using natural remedies. I started a diet removing all sugar-gluten-dairy products from my diet.
But to answer Navion, I would immediately ask the Rheumatologist.
Tappering the Prednisone very slowly may avoid a flare. It may be a temporary reaction to tappering too fast the cortisone. Maybe the jaw fatigue disapear in a few days. If you get a flare in tappering down the cortisone it will not be just a jaw fatigue you will get fire in the house.
I experimented some slight symptoms even tough being continuing Tocillizumab while tappering Prednisone. Those symptoms disapeared in a few days.
Horton is just a very old-fashioned name for GCA - it is the name of the doctor who described it.
And there are things for which I would try a natural approach - GCA is not one of them. The risk of irreversible loss of vision is far too high if you do experience a return of symptoms. It isn't yet known how long remission lasts after treatment with tocilizumab and there are cases where the symptoms return after some months.
I feel so ignorant and this forum is educating me. I had PMR a year ago, very small Pred dosage and tapered off within 6mos. However, had never heard about GCA, or knew that PMR could be a predecessor. Was happy being off the Pred and no aches of PMR. However, started having neck/shoulder strain and eventually sore jaw on chewing. No other symptoms other than these. Shed 20 lbs (nearly 2stone), and continued this way until I awoke one morning with double vision. Optometrist said he could find nothing. Two days later, woke up blind in one eye! Emergency started me immediately on 100mg Pred plus an injection daily for 4 days before saw a Neuroopthamologist. Confirmed likely permanent blindness in December and that is currently the case. Guess message is, keep pushing. I had no scalp pbms or tenderness or headaches: just neck etc as stated. Good luck.
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