good Rheumy, better Rheumy, tapering & Leflunomide

[Japsquar]

A good news story. My Rheumy retired suddenly recently to my dismay as she listened etc, but her replacement is such a good communicator. Sent me a letter with MRI result and when I replied with lots of questions he responded by answering them all. Also may have a sense of humour as I pressed send by mistake on my email leaving in several tongue in cheek phrases I would have edited out!

Previous Rheumy had suggested Leflunomide to help reduce steroid dose but he is not in favour. Says there is no evidence that it’s effective especially if methotrexate and TZB haven’t worked as in my case. I’m not keen to take another drug, but not sure where this leaves me if very slow tapering doesn’t work! I’ve asked about Leflunomide on here before and had quite a positive response so this is a bit of a surprise. Any comments welcome!

[DorsetLady PMRGCAuk volunteer]

I think its like most drugs/alternatives to Pred - some work for many people, but not for all.

So the only way is to try and see. . but if MTX nor TCZ didn't work for you, the options are getting very limited.

No harm in giving it a go, you can always stop if it doesn't suit.

[PMRpro Ambassador]

What do you mean by TZB? Not an abbreviation I'm familiar with.

I suppose it depends who replies - LEF isn't used that much in PMR and can be really unpleasant. When it works. like MTX it is pretty good but the potential adverse effects make it not ideal in older patients.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Think they mean TCZ - looking at previous posts, poster was on it for 6 months but stopped because of diverticulitis.

[PMRpro Ambassador in reply to DorsetLady]

Just wondered - assumed so but you never know!

[Japsquar in reply to PMRpro]

Didn’t mention in the post but the new Rheumy is Italian! Could also be a point in his favour!

[PMRpro Ambassador in reply to Japsquar]

It could indeed!!! Did you ask where he is from? I have been very impressed by the ones I have met here though we get the odd Austrian or German here too and almost the German-speaking doctors trained in Germany or Austria where they do seem to have much more holistic mindset.

[Japsquar in reply to PMRpro]

I don’t know, recognised his name and asked the Rheumy physio, who confirmed he is Italian while determinedly mispronouncing his (very simple) name as is unfortunately our wont in this country and in rural areas particularly!

[PMRpro Ambassador in reply to Japsquar]

When you think how many Italians run restaurants, chip shops and icrecream shops in the UK you'd think they'd do better wouldn't you! I had the first person here to look at me blankly when I gave my surname this week with the usual "as in Harrison Ford" which usually is greeted with "ah so ..." and a delighted smile because they can spell that!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true - but take a good abbreviation to get past you... 😊

[Japsquar in reply to PMRpro]

Dorsetlady is right! Always get in a muddle with that one!