Where are we heading with GCA?

[Happyexplorer]

It might be too close to Christmas for any of you wonderful experts to answer, and really no hurry, but I am wondering what the actual objective is with treatment for GCA?

I presumed at first that high dose steroids were given to eliminate the dangerous GCA symptoms and ‘reset’ the immune system so that steroids could gradually be reduced and the body would be ‘tricked’ into acting normally….hence no more GCA. However, while 50mg prednisone daily reduced my jaw/tongue/cheek/head symptoms at no time have they stopped completely for more than afew days, from when I dropped to 40 mg. Still, over the last 16 weeks, the tapering/reduction in steroids has continued regardless, This sort of suited me and became my primary objective as the side effects of the steroids plus methotrexate rendered me virtually bed/couch ridden, no energy, cramps in hands and feet and dropping things due to hands seizing into claws, legs seizing up after short walks and a general feeling of exhaustion. 5 weeks ago I started Actemra instead of methotrexate and felt better, tho still crazy fatigue, but after 4 weeks of much the same, this week the Actemra has built up/kicked in and I have felt heaps better in myself tho still have jaw/tongue symptoms. (no side effects from TCZ btw) I have been reducing the prednisone by 5mg a week according to the rheumy instructions but have had to slow down as the original GCA symptoms return, plus hip stiffness as per the original PMR. (Altho frankly the GCA/PMR symptoms are preferable to the depressing fatigue!)

(I tried 20mg 2 weeks ago but have gone back up to 25mg daily and still have jaw /tongue symptoms when chewing or talking much)

It occurs to me that if the symptoms are just simmering along underneath and the immune system is by no mean ‘reset’ perhaps this explains why some poor folk have had GCA for 5-6 yrs? Or is that a silly hypothesis? Ofcourse, one definitely feels better on lower dose steroids…but what is the purpose? Do we just stay on low dose forever and subject our bodies to the side effects? Or are we supposed to stay on a high daily dose until GCA is knocked out and then just, gently perhaps, even 1mg at a time, wean oneself off the steroids? In either case, I don’t feel my rheumy has any particular objective except a ‘by the book’ fast reduction of prednisone regardless of ongoing symptoms and I wonder if any one else has a long term ‘game plan’ for their GCA treatment? (I have read Dorset Lady’s slow tapering regime which makes sense!) Has anyone ever actually recovered completely??

Many thanks for any opinions and sorry to sound rather self obsessed, just feel I am ‘flying blind’ somehow 😉 I feel like signing this ‘confused of Sydney’!!

[DorsetLady PMRGCAuk volunteer]

Has anyone ever actually recovered completely??

Well we don’t say ‘recovered’ we say ‘in remission,…..and yes, me for one- over 5 years now. Also jinasc and SnazzyD to name but a few. But, there is possibility (albeit relatively small) that the immune system may go haywire again if is upset/overloaded enough, it hopefully not!

I was never on Actemra - hadn’t been authorised in UK when I had GCA .

This is from my info post-

“The initial high dose (GCA: 40-80mg) usually gives a feeling of euphoria and should relieve at least 70% of pain as it takes control of the built-up inflammation. However, your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation does not build up again. It is a balancing act, you obviously do not want to take too much Pred, but you need to ensure you take to enough to control your symptoms.

From a personal view I think the best plan is to reduce every month (although every 2 weeks seems to be some doctor’s preference and is in some of the guidelines) but, and it is a big BUT, what looks achievable on paper, in real life is very often not!

As I said, people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY (provided you have NO return of symptoms) to find the lowest dose that can keep you pain free, or at least give the same degree of relief as initial dose.”

Full post here -

healthunlocked.com/pmrgcauk...

[Happyexplorer in reply to DorsetLady]

Wow, thanks Dorset Lady for the fast response....so glad you have been in remission for 5 years....so no meds at all now? That's so encouraging ! Your reply kind of supports my feeling that I should perhaps 'start again', increase the prednisone until symptoms abate, then use your slow taper plan then. My Rheumy is very pleasant, but is determined to keep lowering the dose weekly down by 5mg to 15mg, then 12.5 and a bit slower to 6mg and never really comments on my 'wellbeing', side effects or GCA break thro, she only works 2 days a week and is very young, so might not have much experience with GCA . She did say my adrenals wouldn't be affected until I'd been on prednisone for 1 or 2 years. I was wondering about getting a second opinion to clarify,but feel I have had it from you now.🙏😉 I just feel frustrated sometimes that this has been so life limiting, and I guess as you said, there's not a clear path to a 'cure'. Must work harder on my acceptance!Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

‘Fraid she’s a bit out on the steroids/adrenals - any dose over about 7.5mg (physiological dose) and 3 weeks and the adrenals go to sleep!

You might like to see this - healthunlocked.com/pmrgcauk...

You might need to do a bit of educating with your GP…and by all means if you find anything in the FAQs that will help her- please do!

Take care

[Happyexplorer in reply to DorsetLady]

Gosh DL, that was interesting, I must get better at navigating this great site! Its actually my specialist who said my adrenals would be fine, my GP more on the ball in many ways! I was just reading your posts from 9 years ago...you went thro so much, I really shouldn't be moaning at all🤦🏻‍♀️🤷🏻‍♀️

Will do better in 2022🙏😉🥳

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

Moan as much as you like……my late hubby who had cardiac issues once said…. “Everyone has their own pain, it may be less severe or different than others, but that doesn’t make it any easier, it still their pain.🌸

[Happyexplorer in reply to DorsetLady]

You're too kind🤗

[jinasc in reply to DorsetLady]

You are much more polite than me, thank goodness.

"‘Fraid she’s a bit out on the steroids/adrenals etc".

When I read that bit, I answered and then realised I was furious so stopped and went away to calm down. Then hopefully come back now I have sort of 'calmed down' .

That is a basic fact and I personally would be looking for another Consultant.

I don't think there is a GP in the country who does not know that function stops in around 2 weeks, Which is why we have so much trouble when they come across a long-term user.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

😊

[jinasc]

GCA Feb 2007 Remission: Last.1mg on 31 Dec 2011- 2020 still in remission and counting.

DL has said most of it.

I would add - your sight is most important to you. Pred is stopping you losing it totally or partially and once that happens it is gone - no getting it back. So make a friend of pred and now that TCZ is on the scene (which it was not in my day and I was one of the people involved in helping the initial trials to be set up). It can and does sometimes get you to a less time for remission, but there is no guarantee.

Most auto-immune illnesses have minds of their own, they come when they want and go what they want and botyh PMR & GCA are part of that family.

Take a look at the FAQ's and read up as much as you can. Knowledge is power.

[Happyexplorer in reply to jinasc]

Thanks Jinasc, Appreciate your words. I have been reading lots and especially learned heaps from the posts on here. I feel guilty actually as I think I have it easier than many on this forum, just have to curb my impatience!

[yogabonnie]

What a positive question and group of responses. I admire you all. Be well! Enjoy the Holidays.