I'm into my 3rd week of high PRED usage (60 mg for 2 weeks, now on 50 mg for another 2 weeks) for GCA as confirmed by temporal biopsy. Looking back at events and symptoms leading up to my diagnosis, I'm wondering about my jaw. For several months prior to the diagnosis, my jaw would get TIRED when chewing -- not painful, just tired. Even now, while on the high PRED doses, it still gets a little tired while chewing, although better.
I'm wondering about this so that I know what symptoms to look for in the future as I gradually wean off the PRED.
So my question is "have any of you with GCA dealt with a tired feeling in your jaws that went away after treatment?
Thanks!
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montebello
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You wrote " I've been on 60MG PRED since AUG 16th, 2022" for two weeks and now
on 50mg.
When I was diagnosed an on 60mg, all the jaw pain went away and no tiredness.
Whole told you to reduce to 50mg after two weeks?
Also I notice from you bio you have a very active life. You need to slow down and give your body a chance to cope with this auto-immune illness. If you had, say, flue etc, you would not be able to do anything as physical. You really need to re-assess your current lifestyle and take it easy for the time being,.
Thanks for the advice. Actually, both my ophthalmologist and my GP suggested that I do 60 for 2 weeks, then 50, then 40, etc. I have not yet met with a rheumy because their waiting lists are looooooong. As for the active lifestyle, it's a strange thing, being on this much PRED. I seem to have the energy to do things I haven't been able to do for years. Don't get me wrong, I'm not out there all day working. Not at all, but I do get the heart pumping and sweat pouring a few times a day. All the reading I've done also suggests that kind of taper, unless there are still symptoms, which is what prompted my question about jaw tiredness.
I heartily agree with the two ladies above. I cannot imagine dropping 10 mg every two weeks~! I did have severe jaw pain initially and simply had to stop chewing my toast...or whatever else I was trying to eat. I've been on pred and Actemra for three years and just yesterday dropped to 6mg. Prednisone will mask lots of areas of discomfort at your current dosage but if reduce too quickly and burn yourself out, you may have a setback. DL and Pro are far more experienced and knowledgeable than I, but I have walked your walk...walk, don't run...the tortoise wins the race in this case.💕
Well now you all have my attention. But now I'm at a loss of what to do. Everything I've read agrees with the 60, 50, 40, etc routine for GCA until you get to 20 then it's very, very, very slow afterwards.
So if this is NOT the right taper routine, what is?
The right taper may be different for everyone -for example this was mine - You have remember it’s only a plan and may need to be amended for individuals -
80mg - 2 weeks
60mg - 8 weeks
55mg - 2 weeks
50mg - 3 weeks
40mg - 2 weeks
30mg - 3 weeks
25mg - 4 weeks
20mg - 5 weeks
17.5mg - 4 weeks
15mg - 6 weeks
14mg - 3 weeks
13mg - 4 weeks (1st 4 days @ 13.5mg)
12mg - 10 weeks (1st 4 days @ 12.5mg)
Mine followed sight loss -hence to 80 then 60mg for longer than usual and the 10 weeks at 12mg was because late hubby was very ill and then passed.
So sorry about your hubby. What an awful time that must have been for you. Thanks for posting your taper. All the best, and thanks for all you do here.
🌸… thanks-and we get through these things-been off Pred now for 6 years -almost to the day. But just saying, you and your doctor may have a plan, but doesn’t always go exactly as you like,
I wish I could say what is 'right' but I'm not qualified. Honestly, I don't remember my initial tapers I was on 125mg per day for a while then on 80 mg per day for a long while...I'm fortunate I still remembered my name. I do know...I was on 40 mg per day last summer, started to taper, flared and back up to 40 in the fall. When my rheumy started the reduction it was 5 mg per month until I got to 10 and then 1 mg every six weeks...so far, so good at 6mg.
You are in the states aren't you? Why do you have to wait so long for a rheumatologist? He/she is your guide....then check with the forum ☺️☺️💕
Yeah, I'm in the states, but there are so few rheumies so it takes months to get to see one. Same with a lot of other specialties. BTW, you make me laugh. I appreciate your lightheartedness about matters that are quite serious. We all need it.
Really sorry you have to wait for a rheumy, I've always felt sad for my friends here in the UK. Finding a quality rheumy adds to the difficulty.
All of these issues that come everybody's way that are very serious feel very heavy on me also. But, I think about it and what is the best action I can take? The best I can do for myself is #1, embrace the support of this forum and #2, do whatever makes my mind healthier so I can move forward. Sometimes I fill my scooter basket with dog bones and make a lot of dogs in my neighborhood happy....sometimes I take a nap~! When I hear what some folks on here have been through then I believe I'll come out the other side too. Hang with us....it is catching.💕
Oh Grammy80 I’ve got this irresistible image of you wheeling along with your basket full of bones. You are priceless! 😂😂😂 also a great blessing to our canine friends, and us. Xxx
It is a standard red flag symptom for GCA - called jaw claudication. It and visual symptoms are the cardinal symptoms for starting pred at a high dose - at least 60mg but sometimes more. It is caused by the blood flow to the jaw muscles being inadequate to deal with ongoing effort. It starts when chewing or speaking and goes away when you stop. A test for it is chewing gum at one chew per second for 2-3 mins If pain occurs that goes when you stop - it is highly predictive of GCA.
If you are still having chewing problems I would say it isn't time to reduce from 60mg. These are standard reduction patterns - but they MUST be adjusted for the individual patient. Because everyone is different, some need more, some need longer.
The concern about the amount you seem to be doing is because GCA is a serious systemic illness and you are on a very heavy duty drug to manage it. The pred gives you a false impression of what you are able to do and masks the fact your body needs some rest to heal itself.
Thank you PMR Pro. Yes, I am aware that jaw PAIN is a classic symptom of GSA and also that each of us needs to be treated individually depending on symptoms. That's why I'm asking about jaw WEAKNESS. There's probably no definitive answer that anyone can give me on this, but if I'm supposed to taper according to SYMPTOMS (as well as blood tests), then I need to know which symptoms to watch out for. Headaches and scalp tenderness, certainly, but what about jaw WEAKNESS.The jaw WEAKNESS that I've been having for months might, or might not be GCA related, since everything I read and hear talks about jaw PAIN, not jaw WEAKNESS.
My headaches went away overnight (after being put on the 60 MG). But the weakness is still there. My ESR was normal going into this, and my CRP was only slightly elevated. So the only possible indicator that I might still need to be on 60MG is the jaw weakness -- IF that weakness is actually GCA related.
Hi - as most people are saying above, I think it would be sensible to take your jaw ‘weakness’ seriously as a sign that GCA is still very active despite the high pred dose u’ve been on. Also as a sign to slow down a bit both in your taper and perhaps your activities? Of my GCA ‘cardinal’ symptoms, the jaw aching when eating was the last to go - about 3weeks to a month before it stopped aching - when I began pred at dose of 60and just became a bit ‘tired’ for a while longer, then slowly faded away. I ate a lot of soup! Ialso remember that euphoric feeling on high pred - I began it in late March 2019 and on 1st May went on holiday feeling better than I had for years! Then some side effects crept in and things slowed down - hope u find the right pace reduction for you- Dorset Lady’s reduction above is more or less the one I followed. Good luck, Carrie
I don’t know if this is worth mentioning but before my PMR only, diagnosis, I had the sensation that I couldn’t be bothered to chew, like a tired jaw. I felt a bit like that about speaking too. I was diagnosed with GCA 4 years later. They are very closely related diseases. The weary chewing was dealt with at PMR doses though and it is only with hindsight that I have wondered if GCA was waiting in the wings all along. I wonder if your Rheumatologist would consider experimenting with an extra 5 mgs of Pred?
I could have written your reply, Jane! I remember around the time I was diagnosed with PMR being too 'tired' to finish a meal. I only realised much later that the jaw tiredness was almost certainly a sign that GCA was lurking and it was eventually diagnosed 3 years later, as GCA-LVV. My jaw symptoms were dealt with by the PMR doses of pred and I didn't think about it again until much later, reading posts and replies here. Mine was never 'pain', but the 'weakness' that montebello describes.
I suspect that "weakness" might be the first stages of claudication? Is it tiredness? What we call pain or weakness isn't always the same as what doctors mean - it has been a subject of discussion with Prof Mackie and co in our research meetings and I have just participated in a German international study on pain communication here. They insist on using the pain scores/scales - so I gave a score of 5 about how PMR had affected me in the last week, the doctor has given a much lower score. No, my joints don't hurt, nothing HURTS in the way I'd mean hurt when pressed or moved but overall I have a sense of discomfort that is due to the PMR and feels like generalised pain. Which they often don't understand.
We often talk about muscle weakness in PMR - but objectively they have been unable to measure and change in muscle strength. So doctors and patients end up talking at cross purposes.
I’m in a different situation from you in that I started on a PMR dose of 15mg and then a couple of months later was diagnosed with GCA and went up to 40mg. Over a year later, I’m tapering between 11mg and 10.5mg.
Jaw tiredness is one of my main symptoms on tapering. It happens pretty much every time I drop even 0.5mg. I wait a few days and if it resolves, I keep on with the taper. If it doesn’t, I go back up to the dose last felt good (which may be only 0.5 or 1mg more). It’s a slow process, but I am gradually reducing my dose.
And yes, for me, jaw weakness is a definite sign of both GCA and (currently) steroid withdrawal.
I had jaw pain when eating (think I asked about it on here) shortly after being diagnosed with PMR. GP asked me if I would mind going to 30mg . It cleared it up but I sometimes get the jaw feeling as tho I have blown too many balloons up with a slight ache. Never comes to anything
I'm no expert, but have been on the gca/pmr journey over 3 years. My situation may be different from you as I have add'l medical issues i.e., gastro, osteoporosis and heart, other. When first dx my pred dose was increased from 60 to 80mg because I continued to have jaw claudication. 80 mg was a miracle. That may be needed in your case. I had a few flares as I tapered pred- very slow taper is best. Actemra can be helpful in the tapering down process.
I've also been on Actemra for extended time. Actemra is an RX you should ask your Dr about.
Be sure to have DEXA done very soon if you haven't had one. Do not be bullied into bone building RX but do consider if needed. Take advice about taking certain vitamins and changes in nutritional needs.
Most of us on this forum were extremely active prior to this illness. Very difficult to slow down but the disease will be prolonged if you do not adjust activity level. It's a long road to recovery but it will be a learning adventure.
Finally, the representatives on this forum have personal experience with the disease, and are more knowledgeable about gca & pmr than many/most doctors. You're in good company here. Good luck to you.
I think everyone has covered it, but do be careful with what you are doing. I felt wired after three days of 1000g i/v methylpred per day and then onto pred. Overdid it by a country mile, muscles told me otherwise and couldn't walk for nearly 6 months. I couldn't turn in bed or walk to my front door without excruciating pain.I'm not fully back to normal a year later, but very cautious now.
My jaw pain/tiredness was the part that took the longest to go away and even now, 2 years later, I still get it occasionally. I’m now on 2.5mg Pred every other day and TZC once a week.
Hi montebello, sounds similar to my jaw issues before I was diagnosed, a tiredness or slight aching which I had for a few months before developing eye issues which weren’t diagnosed until loss of sight in one eye. Started on 60mg then upped to 80mg for a few weeks. Just over a year later and now down to 1mg for another 4 weeks but been on Tocilizumab as well. I was very active too and was determined to stay so but developed atrial fibrillation issues which pretty sure were down to the steroids so curtailed activity a little but these have now gone away at the moment so able to run, cycle and walk a lot. The jaw claudication improved soon after starting steroids but didn’t disappear completely until a couple of months later. Best wishes.
Are you sure you hadn't had a/f before? Mine is almost certainly due to the autoimmune part of PMR having damaged the sinus node that governs heart rate. It had started before pred - just not recognised. Only realised when something else triggered major a/f episodes and i realised once it was treated - those little episodes were gone.
Can’t be absolutely certain but pretty sure it has all come about from the high steroids. Didn’t have any issues before and heart scan hasn’t showed anything untoward. Haven’t had any AF symptoms now for several months since getting down to a low steroid dose.
That's good - mine was always worse when I flared, It seemed to improve when I started tocilizumab but this week hasn't been so good - but has been a bit stressy,
I would strongly recommend you stay at 40 until you see a rheumatologist that understands GCA. I had the same symptoms as you in February of this year and started at 40. Was fortunate to see an experienced rheumatologist here in US at Mayo and she kept me on 40 for two months longer. Then she she set up a taper similar to what others here have described being very careful not to have flare ups.
Since you are in US the other medication you need to begin is Actemra. Very expensive but it will be key to tapering off prednisone faster with less fear of relapses. Your rheumatologist will want you on that.
I had similar energy when I was on the higher doses and wish I had conserved some of it. As you reduce your dosage you will wish you had it back.
Good morning to you. I have had GCA since 2020 and started on 60 mg of pred for 5 weeks the then came down fairly slowly. I am currently just into a week of taking 9 mg and methotrexate. I saw my rheumatologist this week and asked the question that you have posted. He said to get a blood test done asap for him to get some sort of idea if there is a problem starting. I also think after two and a half years that l know when something is going wrong and immediately watch what l am doing. I very often have a least an hours lie down in the afternoon. Which pre GCA was an unheard of thing for me. It has been very beneficial especially as it often ends up as sleeping time. Which has helped with any pred induced poor sleep patterns. The pred can trick you into thinking you can run marathons or garden all day. I often overdid it a lot in the early weeks but learned that it usually doesn't end well.
I was given 40 mg of pred by the Dr when I had the most horrific jaw problems, plus terrible pain in my tongue, tip going white and if you think of clearing away bits of food between your jaw and gum with your tongue it was enough to make me cry, as i had no help with reduction other than my Dr I reduced 2 weeks on 40, two weeks on 35, 2 weeks on 30, hence I had my jaw problems for weeks. Lost 1/2 stone which I guess was a plus. Finally talked by phone for about 10 minutes to a Rhumat who even he admitted it was too fast. And believe me he was one of the 40-0 in 18 months. (retired now luckily) It all seems like a bad dream now but now reduced to 2mg so far it hasn't re occured, but not counting my chickens yet. ( I have no idea where that strange saying comes from). Forget the over exercising, I'm delighted i can now walk a mile, but squats have me beaten. An afternoon nap is often a necessity, and I feel I'm one of the lucky ones so far. Take care.
"I have no idea where that strange saying comes from"
Quite simple when you look at the rest of it ",,, before they are hatched". You only know how many of the clutch of eggs have viable contents once they have all hatched and the chicks are running around ...
Oops sorry, can I count Brain Dead among my GCA/PMP acquisitions ? All this shut down with not enough interaction with others just a very deaf man has left me wanting. But some of my friends have said the 13th is to see me joining them at one of my old clubs. He has scotched the Hortic. Society, by saying he is coming, imagine sitting with someone yelling out what? And expecting me to relay what the speaker is saying.
Thank you montebello. I also was suffering from jaw weakness, no pain, just tired after a few bites of something chewy. So when the rheumatologist asked about pain, I said no. Limited time with her, so I did not ellaborate. Reading your clear description, I finally realize it ìs a symptom of GCA. My biopsy was inconclusive. Later Pet/CT scan showed major inflammation of my aorta. But by then I was on major dosis of prednison, so it probably cleared the head issues. Oh, and yes, major dosis, 60-50mg of prednison, it gave me feelings like I was Super granny! Finally back to old active lifestyle, yesss. Eh… no, did not help myself there. Take care, look after yourself, you are ill, as are we all. But we will survive!
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