Is this just due to the aging process or a sign of a possible flare after a taper? The non-bilateral element tends to make me think it's more about getting on in years. Also ESR and CRP are normal and have been for several months (latest results 10 days ago).
Background info: I have reduced to 2.5/2 mg of Pred (doing the slow taper, no other medication) and am now into my 3rd year of treatment for GCA/LVV and PMR
Symptoms since latest taper:
- chewing produces an ache on left side only, but it stops as soon as I stop chewing
- slight discomfort in right hip after an hour and a half walking and sometimes at night
- slight discomfort in right shoulder after walking and lying on that side at night (this has migrated from left shoulder to right recently, never both together)
- stiffness in both elbows and both wrists after cycling for a while
- bouts of extreme fatigue after over-exertion, it takes a few days to get my energy levels up again
My thoughts are that the aches and pains of getting older had been masked by the Pred and are now making themselves felt. Most of my "non-PMR or GCA" friends complain about similar issues. The only one nobody mentions is the jaw claudication.
I'm inclined to continue my slow taper for the moment but would apply flare protocol if my general mobility became worse. I honestly can't say that I'm back to where I was when I first started Prednisone and felt on top of the world, but I can deal with life as it is now and am independent.
What do you think?
Written by
Dochaz
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In my view, the jaw claudication does need following up - and as you know, what you describe is typically GCA… albeit in your case only on one side… Have you seen dentist recently to rule out other things like TMD?
The fatigue certainly sounds adrenal related, but could also be PMR/GCA nudging the door ajar as are other things you mention… and others have said pains do wander from side to side.
I think I might try the flare protocol and see what that produces …. just to put my mind at rest. And now rather than let it get worse… it will only take a week or so and then you can drop back down. No great shakes, but might give any answer, and at least you can say you’ve tried when/if you discuss with doctor.
As for bloods, as we always say - can lag behind symptoms- so not the main ingredient for action.
Thank you for your response. I think I'll jump up to 7 mg for a week and see how that goes.Enjoy the rest of your weekend. We are in the midst of an election!
It sounds to me as if you are doing slightly too much activity while your adrenal glands are failing to keep up. You mention walking for an hour and a half and cycling and I imagine you are also doing all the other domestic activities and possibly being quite social. My parents lived in the Drôme and had a great lifestyle with the markets, friends and good weather. Which part of France are you in?
Maybe you feel as I do that you are on the home straight at a much lower dose of prednisolone but it seems like it’s just another challenge in the triathlon of PMR. Like you I was expecting to be returning to the life I had before PMR was diagnosed when I was 60, but now at 67 I am struggling to accept that I have aged. My body reminds me daily that PMR has not finished with me yet.
In my mid 50’s I was told I was too young for a hip replacement, gave up riding my horse and took to carriage driving. Prednisolone took away lots of pain, allowing me to remain pretty active and to resume riding, but now as I reach much lower doses the damage to my hip has resurfaced and my GP reckons I will need a hip replacement. Suddenly I feel so much older!
I recognise your pain and I feel for you, best wishes Chrissie
Thanks for this, it makes me feel less at sea to know what others are going through!
I'm in northern Normandy, north of Le Havre on the coast. It's hard not to be able to get back all the pre-illness energy, but maybe it's just hard having to accept that I'm no longer young 🤨
Sounds as if you DO need to see a doctor if you are having as many us dyes as that.
The fatigue could be due to adrenals struggling, but the remainder sound as if your dose of Pred is too low.. and are you saying you still have jaw claudication?
I am a really positive person so just get on with life most of the time.Only when I read all the messages on Health Unlocked does it remindMe that I have this decease.
44 week wait to see Endocrinologist in my health authority.Im on the list.
Rheumatologist appointments once a year.
As I say I manage my illness as best as I can and mostly enjoy
Yes, I realise that I could be much worse off and can still go for longish walks and ride my e-bike when shoulder stiffness permits. Cramping in my forearm is an issue sometimes and I've just started taking magnesium to see if that helps. Onwards and upwards !
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