GCA Questions

[Lenore58]

Hi Kind Friends,

My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when I get labs and then see my rheumy next month. If everything looks good, she will reduce my dose again. (Not sure by how much—suggestions welcome) For 2 days I have been experiencing vertigo. Today it was less than yesterday. I’ve noticed it’s mainly when I move my head toward the right, and especially when lying down. I’m wondering if this is associated with the GCA or not?

Also, how common are GCA flares and what are best practices for avoiding one?

Thank you for any thoughts or advice on how slowly to taper going forward, and regarding the vertigo.

[DorsetLady PMRGCAuk volunteer]

That’s quite a quick taper -even with Actemra in the mix.. so I’d be inclined to slow up a bit.

1mg a month might be okay, but you won’t know until you try..and you have to consider you are in the realms of your adrenals needing to start thinking about working again. So even slower - 0.5mg may be required.

As for “how common are GCA flares and what are best practices for avoiding one?”

That’s a loaded question, but simple answer is… most commonly flares are within the first 6 months, but not exclusively and invariably due to too fast a taper..

See this re vertigo - and not necessarily GCA related-

dizziness-and-balance.com/d...

[Lenore58 in reply to DorsetLady]

Thank you DL. I appreciate your experienced advice very much, and agree. Very helpful article too.

Is it uncommon to never have a relapse? (I’m really hoping!)

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Well I never had one -bloods did increase when I was under stress re late hubby’s health -and was around 15mg. GP panicked a bit and raised Pred by 5mg - but no GCA symptoms whatsoever.

However because of home situation I barely reduced over the best part of 2013.

It was on doses of 60mg and above for first 9 or 10 weeks -which undoubtedly got a good grip of things at the start -but it had taken 18 months to get a diagnosis.. so probably needed. .

[Lenore58 in reply to DorsetLady]

Hi DL, see my new reply below to PMRpro. Would dearly appreciate your input as well.

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Honestly, don’t think much of her plan [even with TCZ] it is too fast in time.. 2 weeks at any one dose in normally tapering is not long enough to know that dose is sufficient before you drop down.

Her comment regarding dropping slowly to help adrenals applies above 5mg as well… and most begin to feel the affect of them needing a gentle nudge at the dose you are on now…..

So 4 weeks at each dose in my mind….

[Lenore58 in reply to DorsetLady]

Thank you, DL. I will take your and Pro's advice and go more slowly, as I do NOT want a flare, that's for sure!

[PMRpro Ambassador]

Best way to avoid a flare- taper very slowly and be aware!

What you describe COULD be BPPV, and worth seeing your PCP to confirm

my.clevelandclinic.org/heal...

From now on, taper by not more than 1mg per month to allow adrenal function to return which it should manage after less than 6 months on high dose pred but nothing is guaranteed. That is part of the desire for such rapid reductions in pred dose.

Be careful though. Actemra only works 100% for half of GCA patients to get them off pred altogether. The other half have a version of GCA that involves other mechanisms to create the inflammation and Actemra is highly specific to the one involving IL-6 and has no effect on the other (at least) two mechanisms and you continue to need a much lower dose of pred to manage the inflammation caused by them, 8-10mg is a common level. A lot of rheumies seem blissfully unaware of this fact although it is clear from the study documentation which they seem never to have read!

It would be a good idea to get this vertigo checked out - it could well be BPPV but GCA can also affect the 8th cranial nerve that supplies the ears and cause vertigo for a different reason.

[Lenore58 in reply to PMRpro]

Hi Pro,

I followed up with my rheumy after my trip to the ER. She has no idea of the cause of my symptoms, but she was very pleased with my inflammatory markers, etc.,and advised me to drop to 5mg. (from 8) I gasped, and said I wasn't comfortable with that, and so she suggested 7 for 2 weeks, 6 for 2 weeks, then to 5 and stay there for a month. She said then we will lower very slowly, to allow the adrenals to come back. What do you think of this plan? As a reminder, GCA hit last October, and I was upped from about 7 or 8 mg (for PMR) to 60 mg. in early October. I have had no flares of either illness while tapering down from the 60. Thanks for your advice.

[PMRpro Ambassador in reply to Lenore58]

What do I think of it? Too fast, too soon. Even with Actemra at this stage. In theory, you should be able to get to 5mg without adrenal problems but in reality many people feel the lack of steroid far sooner than that - probably because although they assume that pred is absorbed well, some people only get the benefit of about half. That may be because of the amount they can absorb or the because of the amount that actually attaches to receptors so it can be effective - but to drop from 8 to 5mg overnight is asking for steroid withdrawal effects of other sorts. You can do it after being at the higher dose for a week or two IF you had been at a lower dose previously. You hadn't been that low even before the GCA had you?

Why are they in such a hurry?

[Lenore58 in reply to PMRpro]

Thank you for your help. That was my reaction, too, based on all that I have learned from you, DL and others here. I was shocked when she said, "Your markers look great! I think we can drop to 5."

"In theory, you should be able to get to 5mg without adrenal problems but in reality many people feel the lack of steroid far sooner than that - probably because although they assume that pred is absorbed well, some people only get the benefit of about half. That may be because of the amount they can absorb or the because of the amount that actually attaches to receptors so it can be effective" <-- That is so helpful to know; new info for me, so thank you.

I got down to 5 mg. 12/2022, when I only had PMR. (Started on Pred. 8/2022) 5 mg. was short-lived, however, as I flared and had to go up to 7 or 8 again. (I was ot as knowledgable about tapering as I am now, thanks to you all.)

I don't know why she is in such a hurry. The usual rheumy aversion to prednisone, I guess. She listens to me, at least, quite humbly, and I do feel we decide as a team how to proceed. I am going to follow your and DL's advice and take it slower. The last thing I want is a flare!

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Oh dear not another -

Your markers look great! I think we can drop to 5."

Only proves Pred is doing what but should, keeping inflammation levels down… doesn’t mean a green light to hurtle downwards. Plus as PMRpro will explain the TCZ has a habit of skewing blood tests… something else many doctors don’t realise.

[PMRpro Ambassador in reply to DorsetLady]

Thanks for reminding me!!

[PMRpro Ambassador in reply to Lenore58]

DL has reminded me!!! The markers are meaningless - the TCZ makes them fall very low so they can't be used to monitor disease activity. And if she doesn't know that - it is all over the literature - then she shouldn't be using TCZ. Do they not read anything about the new drugs they want to use?

[Lenore58 in reply to PMRpro]

I think they are so overloaded with proper paperwork because of fear 😨 f malpractice this litigious country I live in, that they don’t have time to quite keep up on everything! Kind of a catch-22!

[PMRpro Ambassador in reply to Lenore58]

But the fact you can't use the normal markers with Actemra is a fundamental of monitoring - and her ignorance of that means she could make you really ill by dropping the pred too fast and putting you at risk of an adrenal crisis.

[Lenore58 in reply to PMRpro]

Yes, thank you, I agree. Especially since I am one of those people whose markers have barely been raised. Only when the GCA first appeared did one of my markers slightly climb out of normal range.

[Lenore58]

Thank you Pro. Great advice and I will take it.

They can test for IL-6, right? I wonder why they don’t? It seems everyone should be tested before being put on a drug with such potentially serious side effects.

[PMRpro Ambassador in reply to Lenore58]

I've wondered that too - must ask. I was tested for IL-6 15 years ago - no idea what the result was mind you!

[Lenore58 in reply to PMRpro]

Ha! Odd thing to not tell you!

[PMRpro Ambassador in reply to Lenore58]

I saw the consultant at the first appointment which was fairly much as I expected, would be seen in 8 weeks to see how the 6 week trial of pred turned out. At the second appointment I saw a registrar (which didn't impress me when I didn't yet have a diagnosis) and it was almost a replay of the first one! Told nothing, asked nothing relevant - my 6 hour 70+% response to pred and return of symptoms 5 hours after missing the first 5mg dose was just waved away. Then this reg (who turned out to be a GP with a special interest) announced he hadn't a clue, would have to fetch the boss, Who didn't want it to be PMR, wanted it to be an inflammatory arthritis and I should start sulphasalazine. Luckily that can only be used with consultant supervision and I was shortly to be moving here to Italy and I didn't have a rheumy on tap here. No sulphasalazine, I could continue with pred. No-one has ever suggested it here thank goodness! The 3 different amazing docs I've had here have never questioned it. The physician did GCA/PMR as a hobby - his mentor as a young doctor was a GCA specialist and fired his interest. My appointment was always the last of the morning, usually lasted over an hour and we talked about PMR and GCA and he printed off latest research for me.

[Lenore58]

Geesh, what a blessing to have doctors who “get it!” I think it’s weird that so many American (and British, apparently) doctor resist diagnosing PMR as PMR and seem to prefer it to be arthritis or fibromyalgia. So glad you get good medical care in Italy, and and grateful we all get to benefit from your significant experience and research!