GCA Flare-again

[Preacherball]

Hi everyone. I won't repeat what you can read in my profile as my GCA symptoms are more unusual, but not out of the ordinary. Most recently I had reduced my pred. dose to 2mg along with weekly Actemra shots in preparation for surgery last Dec. 2nd. I'd been sailing along just fine until last Thursday, while on a cruise, and my symptoms returned just as in previous flares. Begins with scratchy throat, which, I naturally thought was probably a cold coming on, especially since I was on a cruise, and my wife was also coughing. But, as a few days passed, I began to realize this was getting worse than what you would expect with a cold, (more severe throat pain, cough) and I suspected another flare. Increased pred. by 10 mg (which I had brought along, just in case) Talked to doc, he advised going up to 20mg for 7 days, then 15 for 7, 10 for 7, 5 for 7, then back to 2mg. I have an appointment with him in March, but I'm wondering why I'd now go back to 2mg, since that did not seem to hold off this flare. I'm also puzzled by what would cause this flare. I did do some more vigerous excercise in the gym on the cruise (which I hadn't done for some time), but other than that can't think of why this would keep happening. I've read the bucket filling analogy, which would suggest I haven't yet found the right balance of pred./actemra to manage the disease. Your thoughts?

[HeronNS]

I hate to suggest this, but I think your original thought that it was some sort of infection (and right now we have several epidemic possibilities to choose from) may have been correct. This in turn could well have aggravated your existing condition. And pred, being an immune suppressant, may not have helped that situation - it is a bit of a double-edged sword that way. I understand Actemra also lowers immune response. I'm sure more informed people will be along soon, this is just my thought on the matter.

I agree that a wholehearted plunge back to 2 mg seems a bit foolhardy, and taking more time would be sensible.

[DorsetLady PMRGCAuk volunteer]

I did do some more vigorous exercise in the gym on the cruise (which I hadn't done for some time), but other than that can't think of why this would keep happening. 

Therein lie your answers….

1. vigorous exercise in gym that was out of your normal activity has led to flare…..

2. why it keeps happening - 2mg is obviously just on the cusp of just being enough/not being enough - so it doesn’t take much to overfill the bucket! And if you are flaring regularly at same dose, that’s a good indication it’s not enough.

So to that end you’d probably be better on 2.5mg or 3mg for a while once you have come down from increased levels re current flare.

Not sure your Rheumy’s advice to raise to 20mg and subsequent reduction is what we would normally recommend - this link contains usual procedure - but obviously up to you -

healthunlocked.com/pmrgcauk...

[Preacherball in reply to DorsetLady]

Is there any proven link between more vigerous excercise and, in my case, GCA flares, or is this more of a generalized observation? Looking back, my first flare a year ago last March was on a mountain ski trip, which is pretty vigerous for me. A second occurrence was in the summer, a more active time. This is assuming these were flares, and not something viral- see comments to HeronNS above. Once I suspected this was another flare, which is totally based on knowing my symptoms, I upped my pred. by 10mg, more in keeping with your suggestions, which I have read. But, rheumy suggested I go back up to 20, so at this point I'll follow his advice and go from there. Thanks for your input.

[DorsetLady PMRGCAuk volunteer in reply to Preacherball]

If you are looking for a medical study, not sure there is - but I would say your experience pretty much proves there is a link.

Exercise is good, but in moderation, and building it up gently you probably could make it more vigorous over time, but a sudden escalation of activity is too much for the body to cope with.. in the best of times, let alone with an underlying condition.

Good luck with getting it under control….

[Preacherball in reply to DorsetLady]

Makes sense. Thx!

[SnazzyD]

Did you take a Covid test? I caught Covid on a cruise last year and what started as an irritated throat turned into severe throat pain.

[PMRpro Ambassador]

Actemra only gets half of patients off pred entirely - there are 3 different mechanisms for the inflammation in GCA, Actemra only works for one of them and pred is required for the other two.

Vigorous exercise is thought to be a trigger for GCA/PMR and can affect the immune system. But at such a low dose you are possibly skating on very thin ice and your adrenal function is also possibly still rather wobbly.

[Preacherball in reply to PMRpro]

Thank you. Would that suggest that in some cases Actemra should no longer be used, if it does not seem to be effective? I've had these flares, if that's what they are, several times while on Actemra and pred.

[PMRpro Ambassador in reply to Preacherball]

That isn't what I implied. There are 3 causes of the inflammation, Actemra deals with that very effectively. Pred is only required then for the others 2 so a lot less pred is needed.

[KASHMIRI1]

I was interested to read what you have written regarding your sore throat. I have GCA and have had the same thing happen at my last two steroid reductions. I had a negative covid test and took it easy. Today there's no sign of it. I do think that overdoing anything is not great for me and causes various adverse reactions. The one sided sore throat is new though.

[Preacherball in reply to KASHMIRI1]

The inflammation for me seems to be primarily in the nasal/throat area, which then moves to the chest, developing a bad cough. I'm in touch with my rheumy and hope to get this back under control soon.

[KASHMIRI1]

Good luck with the appointment.