Any advice to get back on track please?

[Happyexplorer]

Hi kind and wise experts,

I have completely stuffed up my GCA dosing regime and am an aching, weepy, exhausted (and clearly self indulgent!) mess😱😂

I wrote several months back asking for advice on coming off Actemra, after 2 yrs, and upping prednisone to cover it. I had been on 1.5mg pred daily plus weekly injections and all was well, but my LFTs were high and also I am travelling just with hand luggage for 6 weeks through May/June and didn’t want to take my 2 kg ice pack bag with extra Actemra.(apart from cost and LFTs) PMR and DL both gave good advice as always and one of the other kind responses I had was from a gentleman who was having Actemra every 5 weeks, and someone else was on 3.5mg pred daily and no Actemra so it all seemed doable.

All went well at first, gradually increasing gap between injections, although jaw/facial/cramp symptoms re emerged at 5wks without Actemra, so I gave myself a booster, but I mostly managed on 3mg pred, then 2.5 daily but with visitor and Christmas stress I had one injection as a booster on 26th Dec, then again 4th Feb after 6 wks. (I am fine with 6 weekly as am only travelling for 6 wks!) By mid Feb I was trying 2 ¼ mg daily and mostly was OK but last Sunday 3rd March, I came down with a tummy bug and whether that has precipitated the GCA or whether it’s just a virus, but I’m completely exhausted , can’t stay awake, ache all over, can’t exercise, cramping feet and hands etc. I had an Actemra injection on Tuesday 5th (after only 4 wks) and upped the pred to 2.5mg, it did help a bit, but I seem to have fallen in a heap, the headache is back, jaw and facial symptoms and heavy limbs. (Part of this might be the bug tho some definitely the GCA ) I seem to have undone all my work managing with only occasional / 6 weekly Actemra, and have no firm ‘regime’ anymore, I’ve obviously been a bit haphazard! (I’ve lost 4 kg since Sunday, tho keeping up fluids etc.) I even wondered about Adrenal issues after 2.5 years of Pred- just not sure. The place looks as if I’ve been ransacked as I haven’t the energy to pick anything up…really not like me at all!

Should I hit myself with 5mg, or even more, of pred until I get over this bug, or persevere with 2.5? Go back to weekly TCZ ? My rheumy preferred me to get off Pred before TCZ but is happy to prescribe pred as much as I need, she says GCA takes at least 5yrs to subside😫-I don’t see her until June but have prescriptions. The stiff jaw and headache comes in waves, not all the time, mostly in the evenings when I’m tired and then clears. It's not too bothersome but I do worry what is going on inside me where the real battle rages!

( I feel silly making a fuss when I’m down to such a low dose, I remember 2 years ago thinking anyone on under 5mg Pred had nothing to complain about!) Very sorry to ramble on so long- and grateful for any suggestions to get me back on track!

Many thanks.

[DorsetLady PMRGCAuk volunteer]

You’re not silly nor self indulgent -but you are in a bit of a mess.

Sounds both a flare -so maybe follow advice in this link - and adrenals struggling to cope with tummy bug as well as the decreasing

Pred doses.

healthunlocked.com/pmrgcauk...

Hopefully the increase will address the flare side of things -but do monitor headaches/jaw and if they don’t go away then you need medical intervention.

If extra does work -back to 3mg -stay there a month to give adrenals time to catch their breathe and the very slow taper as often advised and only 0.5mg a time…

Tapers - whichever takes your fancy -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Happyexplorer in reply to DorsetLady]

Honestly DL you are an absolute saint! Apart from replying from the other side of the world in 5 minutes flat...that is such sensible, calm advice and I'll be back on track in no time now. Yes it must be a flare...will follow the suggestions/ directions in those very helpful links.

I feel better already!

Sending you a grateful hug from Australia and wishing you the very good Karma you deserve 😇

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

Well I'd just sat down in cafe to have a coffee after Pilates.. .and I always zone in to a question on GCA first - for obvious reasons...

Hope it works you for you... 😊

[Happyexplorer in reply to DorsetLady]

I got lucky then! 🫠

[PMRpro Ambassador]

I'm a bit concerned that you sound on the verge of adrenal problems and I think you should seek some medical advice - stressing the fact you are a long term pred patient.

Sorry I'm late to the party but I have family visiting ...

[Happyexplorer in reply to PMRpro]

Thanks so much PMRpro, appreciate your advice and will check in with the Dr on Monday, just in case.I started 3mg today as per DLs advice and feel more 'in control' now. 🙏💪😁

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

My link advises add 5mg to current dose for a flare - then back down to 3mg once under control. Apologise if that wasn’t as clear as it should have been.. [coffee hadn’t kicked in].😊

Your comment to PMRpro sounds as if you went to 3mg immediately, or have I read that incorrectly?

[Happyexplorer in reply to DorsetLady]

Oh yes I did, silly me, just jumped in, was euphoric to have such a fast answer and help and was not thinking straight as it was late night here! Even 3mg already helped the fatigue, will jump into the 5mg + current dose in the morning, am sure that will sort me out. Thanks so much for following up DL!

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

👍

[Happyexplorer in reply to DorsetLady]

Just wanted to tie the loose end from 10 days ago when PMRPro and DL completely resolved my panic and issue of exhaustion, wt loss and return of GCA symptoms! It was indeed an adrenal crisis, brought on by my tummy bug. I did see a Dr last Monday and it turned out to be a new GP, young and very thorough! She organised a CT scan, blood tests etc all same day as she was sceptical re the adrenal issue. However, increasing the prednisone worked like a miracle! I was able to resume normal life so quickly, even kayaking again by Thursday last, also regained my appetite and have now put back 2.5 of the 4kg I lost in the first 6 days. Am feeling great and back on track, the higher dose has resolved all symptoms and am set to slowly reduce again. Thanks so much for your excellent advice, no idea what would have happened otherwise! 💖

[PMRpro Ambassador in reply to Happyexplorer]

She sounds a keeper! Another occasion where I hate being proved right!!! But it is far too easy to dismiss the effect a "simple" tummy bug can have on us.

[Happyexplorer]

Thanks again, so much!😇