GCA and steroid reduction update

Thank you for your replies and advice to my last post.

I saw my rheumatologist who listened to all my woes and did an ultrasound scan of right temple which was normal. She suggested I increase pred to 15 and reduce from there. I have done that and once I get to 12mg, which was ok, I’ll do Dead Slow by 1/2mg.

Dr also suggested I think about taking Leflunomide. I would be grateful for any experiences or advice about this as my initial reaction is not to add something else at this stage.

Thank so much for your help, I so appreciate all your help on this forum.

[PMRpro Ambassador]

Only the temporal artery? You can have GCA without it showing there - there are a couple of other sites where it can be seen.

I think she is rushing things and there is no proof leflunomide helps in GCA. I would contine with slow reduction - but to be honest, being at 12-ish after 10 months is pretty good going with GCA.

[Hidden in reply to PMRpro]

Thank you PMRpro, she has done ultrasound of neck and underarms on previous occasions. My inclination is just to go with dead slow too.

[PMRpro Ambassador in reply to Hidden]

Even with Dead slow you won't get below the lowest effective dose - but you might get a bit lower. But really - I do think she is in too much of a hurry. GCA is renowned for flaring in the first 18 months and it is admitted that the most common cause for flares is over-enthusiastic dose reduction. i.e. the underlying cause is still active and creating inflammation that needs mopping up. Use a bit of loo roll to mop up instead of a decent mop and the puddle will just grow ...

[jinasc]

July last year and down to 12mg within 11 months. That is fast. Took me nearly 3 years to get as low as that ( two flares within the 1st eighteen months).

I would go very carefully and follow the advice PMRpro has given you..........reduce to fast and you can run into trouble and watch out for any blurring, recurring headaches, jaw pain when easting etc. Also watch out for hearing loss.

Good luck and I sincerely hope you have a trouble free journey, but you Rheumy does seem want to move too fast.

[Hidden in reply to jinasc]

Thank you both for your advice, this is the second flare I've had so will go slowly slowly x