I was diagnosed with GCA in autumn 2020. CRP 125 and red bloods extremely low. I never had headaches but had all the other symptoms and CT scan confirmed inflammation of Aorta etc.
Started at 60mg of prednisolone then 20mg of methotrexate the following month.
Currently trying to taper off pred and fear I’ve gone too far. Now at 3mg and aching everywhere.
Is it relevant to PMR to have pains in your thigh bones and knees when in bed?
I’m still on methotrexate but I’m having pain in my jaw, so my other question is, can you have a relapse of GCA when you’re taking methotrexate or is this possibly just clenching my teeth because I’m worried.
I’m due to have a rheumatology appointment next month.
Any suggestions/advice appreciated
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Stiff-as-a-board
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It’s difficult to say. Can you tell us a bit more about the jaw pain such as where exactly it is, type of pain, what makes it worse, when it happens, anything that helps. How long have your aches and pains been around for? Where are they? Are they there all the time.
You can have a relapse of GCA on any drug if the dose isn’t high enough, and if as you say you are on very low dose of Pred, then very likely. However jaw could be TMJ/TMD issues… does it hurts when you are eating or all the time.
As for thighs and knee, probably need a bit more info…
The aches are in my shoulders, particularly my right hand side going up through my neck (rhs) to my jaw. It aches all the time not just when I eat and the pain is high up near the middle of my ear.
I also get very stiff across my back when I sit too long and my hips are stiff when I get up from sitting. The pain in my hips and the pains going down my leg bones in bed are contributing to a disturbed night.
I’ve had a PMR relapse before (December 2022) but I had managed to get off Prednisolone for 3 months before that. I’m not as immobile as I was then but I’m certainly not moving with ease!
The jaw pain doesn’t sound typically GCA, but I’d never rule it out completely especially as ear is also involved - maybe have a look at TMJ advice/exercises and see if they help at all and try painkillers. If that doesn’t help then you need to discuss both situations with rheumatology.. but you will have done a bit self investigating.
The trouble is with spreading your dose through the day is that the blood level of one dose is down before the next. If it is a PMR flare and it does sound like it, 3mg in small bits is not going to hit the inflammation very hard in one go. Seems logical to keep Pred up but Methotrexate won’t necessarily be fully protective of flares and you might need more Pred too.
Yes I do think I have been over doing it. I felt good until about 5 mg so was lulled into thinking I could do more. I have always been active, running, gym, padel so it is taking me a long time to get to grips with my limitations. I will start taking my steroid in one go from tomorrow
When I got to low doses I found my body to be very out of condition and I got all sorts of muscular and tendon issues. I had to go through a period of remediation. Pred won’t have helped with its effects on muscle and tendons (I started on 60mg). I found feeling better didn’t equate to a body that bounced back if I ever decided it was time to get back to life. Luckily most of the time I was laid low with poor adrenal function so I was stopped in my tracks. It took about 2-3 years to become stronger after zero Pred. I was training to be able set foot in a gym but actually have now decided that it isn’t for me any more and a different approach is needed. I can’t just have at the garden like I did and sadly my super fit lifestyle when I was 54 won’t be back. However, now at 61 it never was, was it?
So, we’re all friends here, what have you been over doing? I don’t want to ‘dismiss’ your jaw pain as over ambitiousness either.
You can have a relapse when on pred - never mind MTX which doesn't really usually play much of a role in GCA management.
Your description sounds very typical of a PMR flare because of going to too low a dose. And in fact, when you got off pred for 3 months it was almost certainly not a recurrence of the PMR but far more likely that it hadn't burned out at all but was at a very low level of activity and it took 3 months for the inflammation to build up to a level where you experienced symptoms again. It is quite common.
Your description of the jaw pain does sound more like a TMJ problem but you can never really say. And it is far better to take all your pred as a single dose - the inflammation is created only once a day in the early morning and taking your pred as soon as possible after that takes out the inflammation most effectively.
I read in your bio you are desperate to get off the tablets. I know firsthand that GCA and PMR are on their own schedule. I had PMR for 7 years when I was then diagnosed with GCA. My journey started in 2011 and this year in April I finished being on meds. Am now back to a busy active life tho with more safeguards to include good care for myself!
The attitude to take is how do I best manage these diseases and care for myself until they burn out vs how do I get off meds. We’ve all had to learn this as we became the most informed about our condition and the best advocates for ourselves.
Thank you for your reply. The plan with my doctor had been to get off the steroids and I was/ am on board with that mainly because of the side effects of the steroid. I have now tapered down for the second time in 4 years but going below 5 mg has become difficult this time and after reading some of the posts, I am realising that maybe I just need to get to the most beneficial level rather than zero. I think my goal will always be to get off and I will always be wondering if I powered through to the end, would my body adjust. I have probably made things worse by being too active and I struggle with that but I know what the answer to that is! I have really appreciated all the advice and will have a lot to discuss at my next appointment.
From not so stiff as a board- cos I’ve taken 6mg this morning 😬
maybe I just need to get to the most beneficial level rather than zero
Yes, yes and thrice yes!
We all want to be off Pred -and most do get there -but your PMR decides not you nor your doctor. Until that time you need to manage your illness with the right dose of Pred ..
Don’t need to be a rocket scientist -just patient! 😊
Good to hear you aren’t living up to your name at least for today…
"maybe I just need to get to the most beneficial level rather than zero. I think my goal will always be to get off and I will always be wondering if I powered through to the end, would my body adjust"
That is the idea - to find the rught dose for you, the lowest effective dose.
And would your body adjust if you powered through to the end? Not if the underlying autoimmune cause of the symptoms we call PMR is still active - the inflammation will stilll be being created and it will build up like a dripping tap will fill a bucket until you are back at the start.
The pred has cured nothing - it is a management strategy to keep the inflammation at a low enough level so that you don't get symptoms. Take the pred away and you will find nothing has changed.
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