Continue Forever on Low Dose Prednisone?

[Pamk1949]

Hello PMR/GCA friends! I had GCA/PMR in 2017, and slowly tapered prednisone over 4 years to 0. Then after almost a full year off of prednisone, in 2021 I had a relapse. Started again on 60 mg prednisone and Actemra injections . Right now I’m taking 1.5 mg prednisone and Actemra every other week. I see a great rheumatologist and a neuro ophthalmologist. My neuro-eye doctor advised today that maybe I should consider staying on the 1.5 forever, because my history. I would love opinions & experiences people on this forum if they’ve considered staying on a low dose forever. I would of course not have the Actemra, because my Genentech funding would expire. Would 1.5 mg protect me from another relapse? PS: This second time around I don’t think I had PMR, just GCA with a temporal biopsy. I know this is a “crystal ball” question, but the eye doctor said if I had a relapse again, it wouldn’t be treated as a flare, but I would be back up to 60 mg again!

[DorsetLady PMRGCAuk volunteer]

Just a couple of observations _

1.5mg is certainly not enough to preserve you from a full blown GCA flare…but neither is it probably necessary to restart at 60mg unless you have sight disturbances … 40mg is considered a sufficient starting dose for GCA with no eye problems.

[Pamk1949 in reply to DorsetLady]

Thank you. You’re right, 1.5 won’t stop anything. And that confuses me. My second GCA just came up out of nowhere. I had no symptoms but temporarily lost vision while doing yoga -bending down. (Amaurosis fugax)Doctors didn’t suspect GCA till days later when jaw problems and markers were slightly raised.

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

Yes not sure why he thinks it will.

Sorry to hear you had 2 bouts of GCA ..one is certainly enough. Very lucky to not lose sight second time around.. mine was gone in a few days.. So you definitely don’t want to roll that dice again…

Take care. 🌸

[Sharitone in reply to DorsetLady]

I didn't have eye problems, but 40mg didn't get near the headache, and I had to go up to 60mg after a few days. Just sayin'.

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

Not disputing anyone may require more, but quoting guidelines - duh! Should know by now that’s not applicable to all… but nobody wants more than necessary.. that’s all I was trying to get across.

[PMRpro Ambassador]

I have no idea why the eye doctor thinks that. The evidence in the follow-up studies to the giacta trial of Actemra in GCA showed that if there were flares after discontinuing Actemra, they were easily controlled by recommencing Actemra - unless Genentech doesn't help with that. However, after some time of having had GCA it is unlikely you would really need to start again at 60mg but no-one can say for sure.

[Pamk1949]

thank you I didn’t know that —in the trials they used prednisone as well for recommencing right? And I always wondered if my time with GCA would give me a break this time around 😊

[PMRpro Ambassador in reply to Pamk1949]

I don't think so - they restarted Actemra successfully but I suppose they may have also restarted pred.

[AtopicGuy]

The patent on Actemra (tocilizumab) has now expired and cheaper alternatives are beginning to appear. These are called 'biosimilars' rather than 'generics' because of the complexity of biologic medicines compared to small-molecule drugs.

[Pamk1949 in reply to AtopicGuy]

Thanks, that’s good to know— last year I checked the price —it was outrageous! I never thought I would be on Actemra this long because of reported side effects, but here I am and no side effects!!!

[Viveka]

These are thoughts, rather than answering your question. I've recently had to go up from 0.25 to 10 for a GCA flare after 3 1/2 years. I'm so glad you're down to a good dose of pred now and must be feeling much better. I guess all the focus is on this not happening again. So thoughts, and sorry these are long:

My mum had two doses of GCA, one after a couple of years of no pred. Her main symptom was jaw claudication. The second was much shorter and lighter, over in a few months I recall. I wonder how likely a third attack is? Statistically low, I think.

I'm not sure if 1.5 could hold back determined GCA. But my rheumy marvelled that 0.25 could make a difference to GCA but he wasn't contesting that it could.

Are there any other even minor signs or symptoms that you could associate with potential GCA. Anything that could tip you off before anything more serious? So if it happened you could perhaps get a blood test and start on 20, for example?

Do you know what your triggers were when this happened? My rheumy (most popular on forum, but quite a traditional doc) asked about triggers. For me it may have been a combination of a temporary but painful bowel condition and a short burst of illness in the family. He pointed to the connection between the bowel and the immune system. This is coming up everywhere now, isn't it, with the gut, brain, vagal connection. He also advised to avoid anxiety.

Finally, a practical point, since you mention yoga, when I was in full blown GCA I did a lot of yogic work connecting with the immune system. Once I felt better, I stopped. I am now doing this again to try and make my flare as short as possible. I have found two online courses by Tias Little from Santa Fe so helpful. These are Autoimmune Yoga and Yoga Nidra. I have quite a bit of confidence that these are effective and preventative. At the very least they make me feel better. Good luck. X.

[PMRpro Ambassador in reply to Viveka]

"At the very least they make me feel better"

And that is the bottom line isn't it - whether there is a good or logical reason for it or not.

[Viveka in reply to PMRpro]

Definitely. And there's much to learn about how minds and bodies operate, though I'd rather not be finding out this way...

[Pamk1949 in reply to Viveka]

Hello Viveka, thanks for your reply! I’m sorry you’re in a flare situation, hope you can find a dose to settle into—it’s frustrating to say the least. Interesting about your mom’s 2 GCA. Mine is a little shorter too (not over yet but compared to last time I’m a year ahead). Yes, realizing your triggers is everything—wish we could avoid stress, but there are other little things can be a sign of a flare—I was in denial with my second time around so ignored some of those important signs. Your autoimmune yoga class sound interesting—I’m in the US, I’ll look into what there is avail here. Thanks again for your reply—take care.

[potterylady]

Man oh man, I have no advice. I just hope you get better and stay better. Wishing you the best with your health.

[Pamk1949 in reply to potterylady]

Thanks potterlady!