80?

As previously posted, the taper down from 60 to 45 was way too aggressive; I ended up in a horrible downward spiral. Even back on 60 mg, for 6 days now, I'm still suffering. Urgent appointment with Rheumatologist, this evening, resulted in a "hesitant" (on my part) agreement to jump to 80mg for 10 days and then try a more reasonable taper down. One step forward and two steps back...

[PMRpro Ambassador]

But you DO have permission to go about it more slowly. And perhaps he will learn the lesson: slower isn't slower when it works...

[Hidden in reply to PMRpro]

Yup, it was actually her idea! I guess I can't fault her... she took a gamble, tried an aggressive approach, it didn't work with me. She did say she tried it because she strongly believed I was at the "beginning" of the Initial GCA flare. She took a shot. 😕

[PMRpro Ambassador in reply to Hidden]

Yes - and if you are at the beginning - then the chances are the activity will increase rather than decrease...

[Hidden]

If you are a normal weight is there any evidence to support a dose of 80mg?

It seems a really high dose to me, are they sure the diagnosis is right/ ruled out mimics/ checked for aortic involvement etc?

Even in ANCA associated Vasculitis with organ threatening disease they rarely use 80mg.

[PMRpro Ambassador in reply to Hidden]

80mg and 100mg are often used for GCA where patients have visual symptoms. Though whether it is right is another question. I'd have thought an infusion of a bit less was equally (if not more) effective.

[Hidden in reply to PMRpro]

For neurological symptoms and imminent sight loss and in most cases they would use IV.

Problem is lack of proper evidence base/ clinical trials.

[PMRpro Ambassador in reply to Hidden]

I think I'd rather have the excess than risk slightly too little - you can reduce relatively fast if the inflammation is significantly reduced and the visual risk is not as acute.

Trials in GCA are very tricky - just on ethical grounds.

[Hidden in reply to Hidden]

She talked about mimics.. thought about doing a Pet Scan, but would want me down to only 10/15 mg, before scan... that's not happening soon. I am a little over weight, but fairly normal. I'm not sure what to say/do... I'm new at this and feel I have to trust her. But you make a very valid point! 😳

[Hidden in reply to Hidden]

It is difficult, I had a GCA mimic and ended up on prednisolone for 2 yrs unnecessarily. Not saying that's what happened with you.

Who are you seeing, Dr Jo Robson is probably the Rheims with the most knowledge in Bristol.

people.uwe.ac.uk/Pages/pers...

[Hidden in reply to Hidden]

Oops sorry, just saw you are in Brighton not Bristol!!

[Hidden in reply to Hidden]

I'm in Brighton... Dr Kelsey Jordan.

[Hidden in reply to Hidden]

I know of her, probably has the most experience of anyone in Brighton with Vasculitis.

Prof Justin Mason at the Hammersmith in London is excellent if you have doubts.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I started at 80mg oral, but had already lost sight in one eye. 80mg was to protect other eye - which it did - reduced to 60mg after 2 weeks.

[Hidden in reply to DorsetLady]

Thank you.... I'm a bit freaked out to start 80 tomorrow, But I feel better knowing someone who's done it and didn't grow two heads!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Oh I’ve had two for ages - trouble is I seem to have lost my sensible grown-up one recently🙀😏. Whoopee!

[Jackoh]

So sorry Mamaici1 you're having to go through all this. Keep us posted and you know you have our support and advice from those with experience. You are not alone! Which is what I think we all need to know xx

[Hidden in reply to Jackoh]

Thank you! ❤️

[GOOD_GRIEF]

Sorry for your troubles, lovey. Try to take it easy. It does get better, but not if you stress and don't get enough rest.

We're here for ya.

Don't forget to take your vitamins.

[Hidden in reply to GOOD_GRIEF]

I hear you Obi-Wan. Easier said than done... Internal ancient warrior still raging against the machine! Vitamins, check! 😉

[GOOD_GRIEF in reply to Hidden]

I came to the realization that there is very little in this world over which we, as individuals, have any real control.

The one thing we do have absolute control of is our attitude. We can choose to waste our energy in helplessness or frustration or anger, or we can choose to expend it doing good things for ourselves or for others (the latter being the choice that does the most to fill the well we need to draw on to help ourselves.)

I admit it is a hard lesson, and I catch myself raging against the machine. When that happens, I cast about looking for something beautiful to appreciate, some small kindness I can do for someone else, or something funny to make me and anyone present laugh out loud. Really seeing the moonlight on newly fallen snow, listening to a concerto, or making fun of my new clumsiness with a self-deprecating remark - all lighten the load.

Like most things worth doing, it gets easier with practice.

[Hidden in reply to GOOD_GRIEF]

Love, love, love... I'll get there in time, I imagine! 😏