Relapse of GCA

[Jampad]

I was diagnosed with GCA in 2019. It took me four years to be able to stop taking steroids because I kept on having flare ups. I was so happy. However, only a few months later I started having headaches, felt terrible and had no idea what was wrong until I suddenly couldn`t chew my food. It turns out I have GCA again and am back on 60mg steroids. I`m devastated. Anyone have any help or advice?

[SnazzyD]

Oh goodness, I’m not surprised you feel devastated. It certainly happens. How are your symptoms on 60mg? How did they diagnose it?

Have you been given a plan? Did they mention the possible use of biologic such as Tocilizumab given that it is your second time around the block so to speak?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that...but have to say a re-occurrence after only a few months off Pred indicates that it never went away.. unfortunately it happens.

The fact that you had a few flare ups along the way also suggests that...although it took 4 years... you may have reduced too quickly for YOUR version of GCA. Maybe if you'd stayed at the lower doses for longer your GCA may have gone into remission of it's own accord, but that's water under the bridge..so no point in pondering.

So this time around once you get back to lower doses, go much slower - not sure how long it took you to get from 10mg to zero.

It took me as long if not longer to get from 10mg to zero than it did from 80mg to 10mg...

[PMRpro Ambassador]

The fact you say that it was only a few months before the symptoms reappeared suggests that your GCA hadn't gone away altogether but that the underlying disease activity had reached a very low level where a low dose of pred was enough to keep the inflammation controlled but no pred was a step to far. Like a dripping tap eventually fills a bucket, the tiny amount of daily inflammation has built up until it is enough for you to feel. The consolation is that, if that is the case, you may well be able to taper the pred dose faster and more easily than you did before - the flares before were probably mostly because you weren't familar with how your body and your GCA behaved and the doctors overreacted by sending you back to the beginning. Often a much smaller increase works when caught quickly.

Come and visit us more often this time - having others around with similar problems does make things feel less bad and when YOU feel bad someone here will have been there and understand.

[Jampad]

Thanks so much for your replies. Your answer that my GCA was controlled at low doses but that once I stopped taking steroids the GCA was no longer controlled makes perfect sense to me. You have made me feel more positive already.

[DorsetLady PMRGCAuk volunteer in reply to Jampad]

Hopefully you can get down to the lower doses quite quickly then... and then take it much slower... much better to be on a low [for life if necessary] than have a relapse and have to go back up to v.high doses... 😊

[SheffieldJane]

I know exactly how you feel because it happened to me. It is hard not to go down a rabbit hole of despair. I am sorry that this happened to you. I was put on 40 mgs - possibly because my extra cranial GCA was not threatening my eyesight at that time. My Rheumatologist arranged for me to have Tocilizumab. This helped me to reduce the high dose to 10 mgs quite quickly. I then proceeded to slow taper using DorsetLady’s taper outlined in FAQs. Many people with PMR have GCA without knowing and this can have serious consequences. All we can do is accept what it is and get back on the healing path. I am just grateful that my condition can be treated and is not as serious as my fears. One day at a time initially. 🌹

[CathyMeg in reply to SheffieldJane]

Wondering how you got off the toclilizumab? Or do you have to stay on that ?

[PMRpro Ambassador in reply to CathyMeg]

You just stop it - it is only funded for 1 year in the UK and then you stop whatever, But SJ developed adverse effects - TCZ and diverticulitis can be a bad mix.

[CathyMeg in reply to PMRpro]

Hoping I can manage with just the Pred. One day at a time.

[SheffieldJane in reply to CathyMeg]

I just stopped with no discernible difference to my wellbeing. I had stopped for infections previously and didn’t notice a change. I am sad that it didn’t continue to (partially) work but I would say it got me off high dose Pred quickly and I am grateful for that. I do seem unwell and stuck on 5 mgs these days. I do not regret trying it. It just didn’t mop up all my inflammation. I would try again in a heartbeat but for my diverticulitis. 🍀

[PMRpro Ambassador in reply to SheffieldJane]

But that is typical for half of patients - there are other causes of the inflammation besides IL-6 and TCZ doesn't work for them. I'd say you did not too badly with it. Shame about the gut effects.

[CathyMeg in reply to SheffieldJane]

Sorry to hear that you are not well. Diverticulitis is a nasty thing too I hear.

Good to hear positives for the TCZ. Health is such a delicate balancing act. Hope yours picks up soon.

[Lollybygolly]

at the acute stage 60mgs might be needed for a short while, then 30, dropping down to 15 quite quickly. Don’t despair: even if you need a very low dose for years, you will have saved yourself from blindness or a stroke at least. I hope you stay well and for now you’ll be having a lot of energy. Take care not to overdo it.