GCA symptoms back at two weeks on 60mg. Anyone else?

[Alihughes25]

Wondering if anyone else has had to go above 60 mg to get their symptoms back under control. I was feeling great on 60 for about 8 days, but over the past few my symptoms have been worsening daily. My headache is back on the right side and I'm having left side numbness/pain in my arm and fingers and an odd sensation in my foot on that side.

Short version of my story - GCA suspected by urgent care in October 2019 (my dad has GCA/PMR). I'm 46 and had a sudden onset headache on my right side that spread to temple and jaw and wouldn't go away. I went to an urgent care after a week and they started me on high dose steroids. I've been fighting for a diagnosis ever since. First two rheums didn't think it could be GCA because I'm "too young". Second rheum agreed to treat with steroids at a lower dose. I went up from 20mg to 60mg over the course of two months with symptoms under control for about a week at each level before starting to occur again.

Fast forward, I just saw a new vasculitis doctor this week who 100% believes it is GCA. He is doing a TAB next Friday but I'm very concerned about my symptoms being back on 60mg.

If you've had to go above 60, was 80mg enough or did you have to go higher? Worried now that we aren't going to get it into remission.

[PMRpro Ambassador]

It sounds a bit to me as if it was caught early-ish and is getting worse over time. The pred does nothing to the actual disease process and any dose is able to manage a certain level of disease activity - so a dose may be enough this week but by the following week the disease activity has risen, and there is more inflammation so last week's dose isn't enough.

Can you speak to this new doctor? Who sound fairly sensible - but I'm far from sure a biopsy will show much after this long on pred.

[Alihughes25 in reply to PMRpro]

Thanks PMRpro! Always appreciate your thoughtful responses. I plan to call his office today for advice on upping my dose. Going out of the country on travel this weekend and nervous about it. He decided to go through with the biopsy on the chance we may still be able to see scar tissue since I was symptomatic for so long.

[PMRpro Ambassador in reply to Alihughes25]

Fair enough - he is thinking then!

[Carrollee in reply to Alihughes25]

Hi. My rheumatologist also went ahead with biopsy after weeks on high dose as she said that even if no giant cells present there may be inflammation and scarring present still. All the best cc 🤗

[Alihughes25 in reply to Carrollee]

Thanks Carollee! Did you get results yet?

[Carrollee in reply to Alihughes25]

Hi. It was 41/2 years ago. It was negative but symptoms too compelling to not be treated. I already had pmr at the time anyway. The biopsy is only useful if its positive. The giant cells could easily be in the part of the artery above or below the biopsy point as you can’t tell from the outside. If it’s positive nobody argues about it. I don’t doubt I had it (seems to be in remission now, still have pmr) so I took the higher dose steroids. 🤗

[Alihughes25 in reply to Carrollee]

Totally makes sense. Happy to hear it’s been in remission for you!

[SnazzyD]

There have been people on this forum for whom 60mg wasn’t enough but 80mg sorted it. Chasing a good enough dose due to medical indecision hasn’t helped and you may well need a bit longer because of high level of autoimmune activity. Do tell your better doc that your symptoms are back. Although my symptoms went within 2 hours of 60mg if I over did it in any small way for a few months, I got warnings. So lack of symptoms in the early stages does not mean the disease is gone; the Pred is just preventing the inflammatory damage. You also have to play your part and seriously rest which can feel like an impossibility when you’ve got the Pred go juice feeling. The Pred can also make one panic which isn’t great at this stage when everything is up in the air, especially reliable medical support.

The biopsy is very likely to show a negative (false or true) after this time on Pred.

It will get sorted but like many you are having a common phase of horrible uncertainty.

[Alihughes25 in reply to SnazzyD]

Thanks SnazzyD. You brought up a really good point that I didn't consider. I was feeling so good when I went up to 60mg that I felt like the Energizer bunny. I've been working out harder, spending longer hours at work and traveling with little sleep, basically doing MORE than I was before. On the days that I work out really hard, I notice more symptoms. Definitely food for thought! Heading to the beach tomorrow and planning to rest hard for several days.

[PMRpro Ambassador in reply to Alihughes25]

Oh yes...

[SnazzyD in reply to Alihughes25]

Jeepers!That would do it. The challenge with this condition is accepting this is a serious illness and that a hectic life doesn’t fit with high doses of Pred and autoimmune disease. If you are one of those people for whom Pred is a positive energiser it is a difficult message to accept and in some ways those of us who are poleaxed are forced to get it sooner but it’s no less hard to take.

[DorsetLady PMRGCAuk volunteer]

You’ve had a bit of a chequered start, but I would expect that 60mg should get a hold of symptoms.

My head pains didn’t go completely, even on 80mg, for about 2 weeks. But they certainly didn’t get any worse, so I think you are right to be concerned. But are you sure you didn’t try to do too much because you felt good?

As SnazzyD advised 60mg is not enough for everyone, so you should speak to your doctor about that as soon as you can. Plus the TAB may not prove positive, but that doesn’t mean you don’t have GCA - symptoms must always be the key.

Good luck, and keep us informed please.

[Alihughes25 in reply to DorsetLady]

I think you hit the nail on the head, trying to do way too much. Pred has given me massive amounts of energy and I've been more than happy to try to spend it all. I'll be talking to my dr. today and hoping for the best with the TAB. Thanks for your always kind responses!

[Blearyeyed in reply to Alihughes25]

Yes , listen to DL on this one , good luck and try and slow down xx

[Alihughes25 in reply to Blearyeyed]

Thank you!

[PMRpro Ambassador]

We can't emphasise enough that GCA is a serious systemic illness - you must behave like a poorly person and rest! Give your body a chance!