GCA relapse

[LRevell]

I’ve had GCA for a year now and was wondering what a symptoms you have when a relapse happens?

[DorsetLady PMRGCAuk volunteer]

Usually the symptoms are similar to those pre diagnosis, and only Pred relieves them

Paracetamol (or equivalent) will not help.

If you aren't sure whether it's a relapse /flare or steroid withdrawal have a look at this -

healthunlocked.com/pmrgcauk...

Is your question hypothetical - or do you have some problems?

[cycli in reply to DorsetLady]

Semantics!! I don't think you can relapse unless you have gone into remission. If you have GCA the I doubt you are in remission after a year. If so then congratulations and commiserations if it is back. i expect you are suggesting a flare due to reducing too fast. The indications are a return of the original symptoms. More information on dosage and progression please including your original symptoms.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

You replied to me -but guess you meant it it for LRevell . But they should see it…

[cycli in reply to DorsetLady]

I recognised that and reposted correctly cancelling original post but that obviously didn't work

[DorsetLady PMRGCAuk volunteer in reply to cycli]

No probs.. as the originator they should see it anyway.

[cycli in reply to DorsetLady]

like many posting now there is insufficient info to make an informed response. I note they are only on TCZ for treatment and not pred. What's the likelihood of success with only TCZ?

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Fran reminds members in her monthly welcome post to fill in their profile - and I recently revamped my posts re using the forum…but you cannot force people to add information if they don’t want to. Things are also more difficult when we have a world-wide membership - different countries, different protocols, and I’m not sure all appreciate that fact..

[PMRpro Ambassador in reply to cycli]

Probably works fine for half of patients. The other half, maybe not. The only reason both are used at first is because there have been no clinical trials to prove TCZ on its own as it is unethical to take the risk in case it didn't work, they know pred does.

[cycli in reply to PMRpro]

dodgy with GCA...Hope it works, but seems like there may be problems. Hope LRevell replies.

[LRevell in reply to cycli]

Hi, I’m doing ok on Actemra weekly injections and stable. Have had GCA for a year now and just wondered what other people experienced with a relapse.

[cycli in reply to LRevell]

Probably wrong word. As I said relapse is something coming back after it has gone. I think you are asking what a flare is like. I'd worry about it when it happens but as we have all said it's like you first experienced symptoms. Glad you are stable. Hope you stay that way. Any side effects to just TCZ? and are you taking anything else? Does it control inflammation

[PMRpro Ambassador in reply to LRevell]

Better to get replies about flares if you start a new thread - only cycli, DorsetLady and I will see this in the middle of this thread.

[PMRpro Ambassador in reply to cycli]

As soon as you press the button the original is registered. You have to actively delete the one that is wrong and repost. HU has its foibles!

[cycli in reply to PMRpro]

cheers. Thought I had.

[PMRpro Ambassador in reply to cycli]

So did I when I did the same a couple of days ago!

[PMRpro Ambassador]

Difficult to say other than a return of what you had at first. But in some people flares or progressions can add in new things. Best thing to do is come here if you have any new funny symptoms!

[cycli]

Semantics!! I don't think you can relapse unless you have gone into remission. If you have GCA the I doubt you are in remission after a year. If so then congratulations and commiserations if it is back. i expect you are suggesting a flare due to reducing too fast. The indications are a return of the original symptoms. More information on dosage and progression please including your original symptoms.

[Sophiestree]

Do you mean a flare? Perhaps you need to increase your dose? Do you have pred as well as TCZ? It would feel like when you were first ill and all that goes with it. For me it is a really bad sore throat and neck, head and clavicle mainly and then my abdomen. We are all very different in how we present symptoms. Perhaps you need to speak to your consultant or the rheumy nurse.

[Frewen1]

I’m mid-relapse at the moment, sign was sudden recurrence of double vision (diplopia) and raised CRP level . Therefore steroids increased again.

Good luck!