GCA tapering

[HelenLM1]

Hello,

I've been lurking in the corner for several weeks, reading and absorbing the wealth of knowledge here and would like to say a huge thank you for all who contribute. It really has been a godsend since my diagnosis.

Quick background as I seem to have been one of the fortunate ones with a diagnosis.

Had my gallbladder removed mid October all went well but second week of post op recovery I developed a headache the like of which I'd not had before and just didn't feel normal, paracetamol did nothing.

Spoke to my GP who saw me that afternoon and took bloods, etc. CRP was 190 and ESR 124, despite the high levels potentially being due to the op he spoke to a Rheumy specialist who advised I start on Pred 60mg asap and the Rheumy saw me 3 days later. 4 days after that had a temporal biopsy which confirmed GCA and I was advised 60mg for 4 weeks, then to begin the long path of tapering.

My first drop was Saturday just gone where I was advised to drop to 50, then dropping down by 10 mg every 2 weeks until I get to 20, then the tapering slows down quite considerably.

During the 4 weeks on 60 mg I had no GCA symptoms which was bliss, just a myriad of side effects to the Pred, but that's another story.

However after my first reduction on Saturday by the afternoon I felt like I'd been hit by a bus again, the headache came back with a vengeance and mood swinging like a pendulum. I persevered with the 50 mg and by Wednesday felt OK again apart from the jaw claudication which I'm still getting with every meal.

I've got my first review with my Rheumy on Tuesday and want to go in with as much knowledge as possible.

Is it out of the ordinary for symptoms to pop up again on a reduction, something I should expect when dropping from higher levels?

Everything I've read seems to point to this being too big a drop if I'm getting symptoms again, but if this is just how my body reacts to a drop then it may be ok for me if the only GCA issue is the jaw claudication ?

Thanks in advance for reading.

[DorsetLady PMRGCAuk volunteer]

Hi,

Personal opinion - although you felt okay at 60mg, think you might have been better staying on that for another week or so.

But that’s by the by… more concerned that you are still getting jaw claudication… after the drop to 50mg -and the fact that it has remained when the other symptoms seem to have receded…

Sometimes it’s difficult to know what is steroid withdrawal and what is a flare initially… but with one issue continuing would say it could be a case of both.

This link explains how you can usually tell -

healthunlocked.com/pmrgcauk...

I know the taper you describe is a standard one as in guidelines, but it doesn’t fit everyone - so I would hope your Rheumy revises it..and may suggest you either return to 60mg for another couple of weeks, or at least up to 55mg before you taper again.

Plus…2 weeks is not always long enough to know your current dose is sufficient before you drop down.

My situation was different to yours having lost sight pre diagnoses - but for your info, this was my taper to 20mg and based on how I felt firstly and bloods secondly- and as we are always saying it needs to be adjusted to individual-

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

[SnazzyD]

If your dose is too low to counter the inflammation from the GCA you’ll get symptoms. However, we also talk about withdrawal where the body reacts to a lesser dose in a general way and until it readjusts you can feel off. It usually kicks in within a day or few and can feel like the flu, with headache and feeling weird. It used to last a few days for me but no more than a week. Higher doses reductions are supposed to be easier but I found myself on the couch even after a 5mg drop from 40mg. 10mg drops were always too much for me. You get to know what it feels like after a few times and the timing helps.

It is concerning that you are getting jaw claudication which suggests you might be sailing close to the wind in terms of effective dose.

[musicalJ]

I started on 60 mg prednisolone for PMR & GCA in February this year. The only symptom uncontrolled was jaw claudication, which lasted several months. I was able to do the standard reductions of 10 mg every 4 weeks until I reached 20 mg, after which problems began. Above 20 mg, every time I reduced the dose I was OK for 5-7 days, then had one or two days of feeling rough and was then OK again. Since 20 mg I've had to come down 1 mg at a time (having tried unsuccessfully to reduce from 20 to 15 and had to go back up to 20), staying on each dose at least 4 weeks. I've been lucky not to experience the severe headaches. Hope you will soon get them controlled.

[Grammy80]

I'm so glad you are here. The knowledge I found here literally saved my mind and kept me grounded. Like Dorset Lady, partial sight loss lead to my diagnosis in 2019. This certainly is not a 'cookie-cutter--one-size-fits-all' disease, this GCA.

It concerns me as well that you are having jaw claudication and I'll be anxious to hear what your rheumatologist says Tuesday. I'm in the States and though it has taken a while for me, even with TCZ, I truly felt better when I tapered slowly. I would sometimes reduce by .5 and stay on my new dosage for 4 weeks. Remember now, you have a host of folks in the boat with you....always here. 💞