GCA FLARE AND SEASONAL ALLERGIES

[christine2715]

I have had GCA for 8 years, down to 2.5mg steroids and taking Actemra, TZ every 3 weeks. Now back to 2 weeks. I am having a bad flare since 8th March. Put my steroids gradually up to 5mg per day and taking naproxene as that sometimes helps. I am really unwell and struggling. Feeling miserable. I am meant to go to my stepsons wedding so really need to get better by 5th April. I have allergy to yew tree pollen according to tests and we have a huge tree in the garden. I have not had any runny eyes or allergy symptoms but i wondered if allergies can contribute to causing flares. Anyone have any experuence of this. I am probably clutching at straws. Feeling terrible.

[DorsetLady PMRGCAuk volunteer]

No experience of allergies etc - sorry.. but would just say the usual advice is to up dose by 5mg from current dose not up to 5mg. , and in one step not creeping up, as that rarely works.

So maybe try going up to 7.5mg and follow the protocol in this link… but dropping back to 3mg rather than 2.5mg.

healthunlocked.com/pmrgcauk...

Your symptoms sound they may adrenals as well as a flare…Hope the extra Pred helps and you can enjoy the wedding… but do remember to rest when you need to…

[christine2715 in reply to DorsetLady]

Thanks, good advice

[christine2715 in reply to DorsetLady]

Read this link thoroughly. Its excellent. I have always gone back up 1mg at a time which doesnt work. Thought i would have to taper after and it took me years to get down to 2.5mg. I think 2.5mg is the lowest i can get down to. I had been dropping in 2mg twice a week which seemed ok but 4 times a week combined with stress and doing too much was what caused it. Feeling much better but feel ive got the lion back in his cage but not quite locked the door yet. Very many thanks.

[DorsetLady PMRGCAuk volunteer in reply to christine2715]

Locking the door is often a lot more difficult than you imagine….😅😂…

[PMRpro Ambassador]

How long have you been injecting Actemra 3-weekly? LemonZest11 found that led to trouble - I only have PMR and even at 2 weekly I struggle at 7mg pred. Creeping the dose up slowly rarely works so you may just be playing catchup on the inflammation.

And are you sure this isn't something else - Covid even?

[christine2715 in reply to PMRpro]

Thanks for your comments. Definately GCA. Have had it 8 years and recognise a relapse. I had also fairly recently started TZ three weekly which i used to be on in the past. Went to 2 weeks for an op. I think a combinaton of stress, overdoing things and change to TZ. Now realise i should have made more of a change at once but loathe yo go up to 7.5mg as i will take at least 9 months to get back to 2.5mg. Might have to. Thanks for advice.

[PMRpro Ambassador in reply to christine2715]

If you leave a flare you might need a lot more pred than that. TCZ is good but it isn't perfect. For half of patients it will get them off pred because thir GCA is entirely due to the cytokine IL-6 which is what TCZ works on. The other half continue to need pred because there are at least 2 more underlying causes of the inflammation which aren't controlled by TCZ. So even going back to the more usual 2-weekly TCZ may not be enough - I can feel it wearing off the last few days. Neither of the rheumies I know best are surprised ...

[DorsetLady PMRGCAuk volunteer in reply to christine2715]

Not necessarily, that's the idea of the protocol.. take extra for up to 2weeks, get the flare under control and then you can drop back down to a dose just above where the flare occurred. Doesn't need to be treated as an ordinary taper.

[christine2715 in reply to DorsetLady]

Thanks i didnt know that.

[DorsetLady PMRGCAuk volunteer in reply to christine2715]

It’s in the link I sent…😊

[MiniSpec]

Regarding allergies, have you tried taking one of the proprietory anti-histamine tablets like Loratidine or Cetirizine? I found that they help quite a bit if I ge sneezing fits, even though I don't know the actual cause of my allergy.

[christine2715 in reply to MiniSpec]

Thanks, yes taking Loratidine.

[Grammy80]

You have gotten great advice. I'm in my sixth year and presently at 7mg plus Actemra weekly.

In my case I got to zero, but it didn't do the trick, so I went back up. Rheumy and neuro-ophthalmologist have advised me to stop at 5mg. Hope the higher dose controls it for you by April 5. My best💞

[LemonZest11]

Why are you on 3 weekly TCZ? For me it was due to low neutrophils but it worked for 3 years at 3 weekly. It was on the taper to 4 weekly that things went awry. If you can tolerate fortnightly jabs, I would do that. The other advice about your flare is from experts who know. All the best.

[christine2715 in reply to LemonZest11]

Thanks, for quite some time was fine on 3 weekly. Reduced to 2 weekly for major foot surgery and was hoping to get back to 3 weekly but once i get over this will stick at 2 weekly.