GCA symptoms normal CRP

[Phoenix51]

I have arrived at a place I never thought I would - 1mg Pred reduced from 60mg in early 2020 when I was diagnosed with GCA. It’s taken me a long time to reduce due to recurrent symptoms when reducing. It’s been a slow process but I’ve been helped my members of this community and my consultant.

I have been experiencing various symptoms such as ear/head pain ( not on the scale of my original GCA symptom) hip, shoulder, and ankle pain, fatigue and restlessness.

I didn’t do myself any favours as I attended a high intensity exercise class which I’m still feeling the effects of now , a week later, the pain and stiffness in my legs has increased and far from making me feel better I feel worse.

I finally sought advice from GP who sent me for bloods thinking might be inflammation/PMR. CRP result has come back normal ( not unusual for me I tend to be more symptomatic )

My white blood cell count was out of normal range as was my neutrophil count but inflammation markers normal

If I contact my consultant I’m pretty sure he will suggest to increase Pred but I’m reluctant to do this as it’s taken me so long to reduce to 1mg ( with the aim of being off the steroids completely )

Any suggestions?

[DorsetLady PMRGCAuk volunteer]

. It’s taken me a long time to reduce due to recurrent symptoms when reducing.

It may seem a long time to you, but it’s about par for the course for GCA… most of us take around 4 years… and the fact that you had recurring symptoms indicates that your GCA still has some life left in it…

.. and no you probably didn’t do yourself any favours with high intensity exercise class… so some issues may well be due to that.,.. but not the ear/head pain [which sounds suspiciously like GCA unless it’s TMJ /TMD

Fatigue and restlessness could be adrenals stuttering…

Couple of links for you to look at -

webmd.com/oral-health/tempo...

healthunlocked.com/pmrgcauk...

However would say it could be GCA grumbling [even though bloods aren’t yet raised] - so if you need a bit extra Pred so be it..

you may want to be off steroids - and you will in time - but not until your GCA is in remission…

PS - just seen SheffieldJane comments - so another link -

healthunlocked.com/pmrgcauk...

[Phoenix51 in reply to DorsetLady]

Thank you for your helpful reply I will follow the links you suggested and report back . I will also look up TMJ as I find knkw what that is. Thanks again.

[ab58sf in reply to DorsetLady]

DorsetLady, you are always so helpful!! Blessings

[SheffieldJane]

I wonder if following the guidance in FAQs on flares would save your situation. For instance I would increase to 5 mgs for a week or so and then return to 1 mg without tapering, or maybe even 2 mgs if I had been a bit in denial over my symptoms. I would also avoid the violence of a high octane exercise class. There is going to be a period of rehabilitation. Patience has helped get you here, don’t give it up now. Those symptoms, left unacknowledged and not acted upon will simply build up until they can’t be ignored.

[Phoenix51 in reply to SheffieldJane]

Thank you, and yes I am ashamed about the exercise class, so silly, I think I thought my symptoms were maybe due to lack of exercise so decided to try a class, just picked the wrong one..I was having the symptoms before but this has obviously made them worse and it’s taking me longer to recover..

Thank you I will take a look at the FAQs

[SheffieldJane in reply to Phoenix51]

I am in awe of your ability to contemplate the class, but we just don’t bounce back.

[SnazzyD in reply to Phoenix51]

After GCA i had to get fit enough to step into a gym or class such is the effect of Pred, deconditioning and letterly low adrenal function. I am also impressed you managed to get to the end of the class. Any attempt of mine to do a ‘normal’ exercise session would end in a week or even two of all sorts of issues, particularly in the upper body.

You many well be on too low a dose for your GCA but be mindful that stiffness in your neck muscles can mimic GCA. Poor posture from weakness can cause havoc here. Have a read of this as it helps one keep this in order and not be fooled in either direction.

healthline.com/health/stern...

If you want pictures

youtu.be/DCOuG3bs2f0(Not working as expected?)

[Phoenix51 in reply to SnazzyD]

Thank you for your helpful reply.

I have been able to do gentle exercises classes since I completed the Nuffield Joint Pain Management Programme which was excellent. I’ve slowly built up to gentle yoga and Pilates but I clearly bit off more than I could chew with the class last week.,

I will take a look at the link you provided thank you

[DorsetLady PMRGCAuk volunteer in reply to Phoenix51]

Don’t be ashamed… you were just slightly over ambitious 🤔- but I’m sure we have all attempted things we probably shouldn’t have! With or without GCA… 😂🤣

[Phoenix51 in reply to DorsetLady]

Thank you 😌

[PMRpro Ambassador]

Even at such a low dose the exercise warnings still apply - BUILD UP SLOWLY. If you are able to do something you will get to it faster than if you can't but in the process you will see what you are capable of but without half-killing yourself in the process!

[Phoenix51 in reply to PMRpro]

Noted ( and I agree)

[Viveka]

Use a journal to write down symptoms and see what they correspond to and whether they get worse over time or if they come and go?

I developed PMR on 3mg for GCA - it was unmistakable bilateral shoulder aches whereas yours sound more random. Really upsetting when the end is in sight, but as you have got to 1 unlikely you would need more than a tweak.