Relapse gca

[Hoobabes]

Yesterday I woke with neck ache thinking I'd slept in the 1 position all night I put a hot water bottle in it and took my usual pain killers.

As the day went on I noticed my vision was blurred and I was feeling nauseous.

Still thinking it was a stiff neck I ignored it as best I could.

This morning I have awoken to my GC a symptoms in full technicolor.

I've taken 25 mg of steroids when I was on 17.5mg

My question is do i go back to the 30mg i started on a year ago

And if I do will I need to wean again from there as I've not been able to get under 17.5mg

I was diagnosed November 2019.

Any help gratefully received

[jinasc]

You really need to go up to 30mg and stay there and get hold of your Rheumatologist. A full blown flare is not to be messed with...........so get cracking on that telephone of yours and if you don't get anywhere with GP or Rheumy answering and helping.........off to A&E - its safe to go there they know what they are doing in relation to keeping you safe from Covid.

[Hoobabes in reply to jinasc]

Thank you I'll call the rheumatologist see what they say.

I really dont want to go to a and e fir thèm to tell me to up the steriods

[DorsetLady PMRGCAuk volunteer in reply to Hoobabes]

If you need to increase the steroids -you NEED to. Are you prepared to risk you sight?

[Hoobabes in reply to DorsetLady]

No I'm aware I need to up the steriods I just dont want a trip to a&e tbh

[DorsetLady PMRGCAuk volunteer in reply to Hoobabes]

No you probably don’t - but at the moment it’s one of the safer places to go.

[alvertta in reply to Hoobabes]

Careful. Your sight is in danger. Up that prednisone.

[PMRpro Ambassador]

You must contact your medical team as soon as possible - and by that I mean today.

However - if you have GCA, 30mg was a very low starting dose, 40mg is regarded as the bottom or the range and only for patients with no jaw or visual effects. You might have reduced faster/better had you started with more pred in the first place.

[Hoobabes in reply to PMRpro]

Thank you I think we have spoken about this before there is concern around the steriod induced diabetes now as well so gp has said stay at the 30mg but speak to rhuemy

[PMRpro Ambassador in reply to Hoobabes]

You can reduce the risk of steroid-induced diabetes by cutting carbs, especially processed ones, drastically. Not NO carb, but carefully slected low carb. And diabetes can be managed with medication if necessary.

What you can't do is reverse the visual loss that is associated with GCA inflammation that is inadequately managed - and that means you need a high enough dose of pred. No ifs or buts.

Just as while you may not WANT to go to A&E and be told you need more pred - that may well be the safest option. A&E can call your specialist rheumatologist, especially if you go to the A&E at the hospital where they work, even if you can't get to speak to them directly.

[fmkkm]

When eyesight is involved 30 mg may not be enough. As everyone here says, seek treatment today and let us know how you get on.

[Hoobabes in reply to fmkkm]

I've spoken to my gp he says 30mg cant speak to the team but have left a voicemail for the specialist nurse to call back.

Everything else just rings.

Thank you all for your advice.