Oh dear, GCA symptoms on 0.5 to 0.25 taper

[Viveka]

Hi folks

Very disappointed. Started with GCA 3 years 4 months ago. Doing a slow taper of 0.25 a month since I was on 2.5. No GCA symptoms for a year. Across two years, I only had a minor incident on 4 mg - a few days of minor symptoms which resolved without increasing. I thought the GCA had gone and was doing the slow taper for adrenals and PMR.

Two weeks after I reduced to 0.25, I started with a few head stabs and tingles which then died away, but after a couple of days they started again so I increased to 0.5. Two days on 0.5 the symptoms suddenly got a lot worse becoming a sore vice around my scalp and I felt ill. Today I wavered over 3mg or 5mg, and chose 3 for now. So...

First: the disappointment of being thwarted so close to 0 after over 3 years. I know symptoms of PMR can be kept at bay by 0.25mg but have not heard of this with GCA. Is this a thing?

Second: my worry that my symptoms feel much worse than any flare I have had so far. I feel as ill as when I first started with GCA. How usual is it for this to happen? Any thoughts?

I am going to ring for an appointment with RH to be on the safe side.

Thanks in advance for any thoughts. X

[DorsetLady PMRGCAuk volunteer]

Sounds as if GCA may have been chugging way in background for some time -and has now finally decided it’s time to poke its head above the parapet.

Sorry to hear that -and I’d be inclined to take at least 5mg for now and ring RH for advice. Do you have enough Pred for 10mg or even 20mg a day for over weekend if you don’t get reply -and if things go downhill. Hope not, but always have to be prepared just in case.

If push comes to shove -then you know what you have to do - and I well remember those vice like pains. (12 years ago).

Please let us know how things go.

[Viveka in reply to DorsetLady]

Thanks DL. Yes, I've got a box 5mgs. Didn't think I'd need them. I will be back in touch to discuss the post-flare taper, fingers crossed.

Vice wasn't the right word, it's more sore pressure. The actual pain is far less than migraine. It's a fluey feeling head and body without the snuffling. (I have to be careful going up because seven months after diagnosis after a flare I went up to 30 under RH, but it turned out that adding pred was causing symptoms that mimicked GCA. Go figure.)

By the way, my post didn't come up today in the morning message. Not sure why. I am feeling a bit lonely.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

HU was a bit odd yesterday so maybe a glitch in the system -again!

Doesn’t help when you are feeling anxious.. 😊

[Viveka in reply to DorsetLady]

Well, it was mainly a question for you and Pro and other experts, but I was also hoping for others' general experiences. I may post again when in a few days. X

[SheffieldJane]

Please urge the Rheumatology to treat this as an emergency. GCA may have reappeared in all its glory.

[Viveka in reply to SheffieldJane]

Thanks SJ. Doesn't feel like an emergency, feels like another unpleasant experience that will make life crap over the next few months. I've probably been discharged, cause I see Rod. Would get in touch if I got worried and I've plenty of pred.

[SheffieldJane in reply to Viveka]

Good luck Viveka, there are a lot of these moments with this disease. The Press make the NHS feel unsafe, particularly any emergency provision. 🍀