Don't blame it all on the prednisone! Check things out.👩🏻‍⚕️ or 👨🏻‍⚕️

[Grammy80]

I'm writing to add a soft warning to be mindful. I was diagnosed with GCA in 2019 and finally got down to single digits this summer, I'm taking 5 mg per day plus Actemra. I'm only dropping .5 mg every six weeks.

It has been fairly smooth except the fatigue, I did nothing and was so, so tired! I had kind of slipped into accepting new discomforts because I was tapering andthe fact that my adrenal were probably still asleep.

My left arm and shoulder had been quite sore and then my arm got weaker. My GP couldn't see me so after a few days I went to the ER. A CT scan of my neck showed that my small thyroid nodule of 8 years ago had turned into a large mass, 4.8cm and was pressing on the trachea. Thankfully, it was benign~! My GP saw no reason to follow-up since it wasn't malignant....so I had a friend who is an oncologist refer me to a new GP. This led to a referral to an ENT man for ultimate removal of the mass only(not my thyroid) and a cardiac workup to make sure I was in shape for surgery. (Grammy80 is 82 now, so it matters.) My ECG was abnormal and the nuclear stress test showed restricted blood flow; now I'm being schedled for a heart catheterization and possible stent.

A few months ago I had written how I was 'coma-like' in my fatigue and some of you suggested I pursue the matter. I didn't. I'm very fortunate that my problems were found 'accidently' and not the hard way. We know we are not at our best when tapering, but if what you are experiencing seems a bit extreme...don't do as I did, get it checked out. I know I'll be fine; want to make sure all of you are too.💞🥰

[Hunter134]

Oh dear Grammy80.So glad your issues are being taking care of Best of luck with the surgery.Hugs❤️

[SheffieldJane]

sending love and prayers for the best outcome Grammy. Sensible warning.💖

[potterylady]

Oh Grammy, that's crazy! Thank goodness they found that lump. That must be causing a lot of your fatigue too. I hope you feel much better soon!

[123-go]

What a good thing that you're 'on the ball' Grammy. Your experience reminds us that if something feels that it's not right we should follow up. Love and best wishes 💐.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, but thank goodness you did follow it up, and fingers crossed the procedure to insert stent goes well. Take care 🌸

[bussell]

Hope everything goes well, dear Grammy. Wise words from you as always, and thank you for your warning to all of us.

[Theziggy]

Quite the journey you've been on Grammy. Hope everything works out alright.

[jinasc]

🤗 🤗 🤗 🤗 🤗 virtual only - wish it could be real ones.

[montebello]

You are a blessing to us all. Thanks for all you share with us, and best wishes and prayers for recovery

[EdithWales]

Very wise

[beethovenite in reply to EdithWales]

Yes to all those telling you how wise you were to follow up your hunches.

I am so glad you did.

Beethovenite.

[Grammy80]

👩🏽‍🤝‍👩🏻👩🏻‍🤝‍👩🏼👩🏻‍🤝‍👩🏻👩🏼‍🤝‍👩🏻👩🏾‍🤝‍👩🏻👩🏻‍🤝‍👩🏼👭👩🏼‍🤝‍👩🏻💓💞Thanks to all, we always have each other's back!!!

[Bcol]

Excellent advice there Grammy, it's very easy to blame everything on our present medication and condition. Hope everything goes well with the stent etc. Lots of hugs.

[Pixix]

Hope all goes well…& yes, not everything is cured by increasing pred!! My GP has found I have other problems & fears that he’s gone down the wrong route for 3 years…but it’s an eleven months wait to see specialist, so will befour years down the wrong route…possibly! Please take great care, sending hugs, S xx

[Sharitone]

Best wishes for both your procedures - and may they come soon!❤️

[Spirograph]

all ‘bestest’ of wishes to you for impending surgical procedure 🌻🍁🍁

[Leafsong66]

Thank you for sharing. It’s so important to listen to our bodies!

[Wouldlovetorun]

Thank you for sharing this with us🙂Wishing you a speedy recovery and good health 😘