Leflunomide update

[DogAgilityObsessed]

I’m one week into 10mg LEF and thought I’d just let you know I’m feeling fine with it. No nasty side effects and blood pressure “optimal” (thanks for all the recommendations for a monitor). I know it’s still early days but I was scared of taking the drug. And I’ve only had two carefully measured gins in that week!

I’ve just gone down to 20mg pred. Weight and blood sugars have remained constant.

But I am suffering with brain fog massively and my husband is dealing with the consequences. No headaches but I did experience jaw claudication (not clarification as Apple corrected original post!) while eating dinner last night (I blamed the masses of kale and tenderstem broccoli). Otherwise I feel good.

[PMRpro Ambassador]

Wait a bit before trying to taper - leflunomide doesn't "kick in" instantly, it may be weeks. You have changed a parameter (adding LEF) and you need to get used to that too.

"Jaw clarification" - got to love autocorrect/predictive text. Maybe some clarified butter would have helped the kale stems ...

[cycli in reply to PMRpro]

couldn't have put it better😂

[DorsetLady PMRGCAuk volunteer]

As PMRpro says, don't rush the Pred.... but good luck when you do..

[DogAgilityObsessed]

My rheumatologist wants me to follow this reduction plan. I tried to question it but he was adamant. So I’m thinking I have to try while being alert to changes in how I feel.

Rheumy proposed pred reduction plan

[PMRpro Ambassador in reply to DogAgilityObsessed]

Crackers ...

[cycli in reply to DogAgilityObsessed]

Yet another example of a professionals ignorance. I can only see you flaring with this schedule

[DogAgilityObsessed in reply to cycli]

But what can I do PMRpro and cycli ? I really don't want to piss him off and I know I cannot marshal my arguments convincingly well.

In fairness (?) he did suggest (I think) that the tapering should be slower once I drop below 10mg.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Trouble is [with or without LFT] only 2 weeks on each dose of Pred is not enough time to know that dose is sufficient before you go lower.

And yes, it certainly should alter when you get to 10mg, but you’ve got to get there first.

All you can do is try… and keep notes.

[PMRpro Ambassador in reply to DogAgilityObsessed]

That is fair enough - but the leflunomide needs a chance to start working and 2 weeks isn't long enough. It could be 2 months - if it works at all. Lorna said she actively felt it start to work.

[cycli in reply to DogAgilityObsessed]

I well understand your reluctance to not "piss him off". However, consider this. Did it , even for a second, occur to him how his schedule might affect YOU? He won't feel the effect of a flare. you need some weeks to acclimatise to the Leflunomide. If all is well then reduce but I would only do 10%. Lef. has helped me get from 22.5 where I flared 3 times to 6mg now. I'm taking 20mg daily. I wouldn't confront him if you don't feel secure but just follow a more sensble regime as others here advise.

[PMRpro Ambassador in reply to cycli]

Yes - I forgot the concept of not changing 2 things at once!!!!

[123-go in reply to DogAgilityObsessed]

Your post came up in my Daily Digest this morning (does 18 hours ago count as ‘daily’?).

I was diagnosed with PMR in Feb 2018.

I began taking Leflunomide for Aortitis in October 2021 when I was on a three day cycle of pred…2mg/1mg/1mg. I was still on this dose on my respected rheumy’s instructions until my review six months later-April 2022- when a new to me rheumatologist told me my my PMR had “gone” and I should “stop” taking steroids. Did I heck! A written complaint to the department resulted in a review with a knowledgable rheumy and my pred dose was reduced to a four day cycle of 1.5/1/1/1mg . I stayed there for six months till Oct 2022 and then went to 1mg daily with advice to reduce by 0.5mg per month. This is where I followed an extremely slow taper and reached zero pred six days ago. I am still on 10mg Leflunomide and expect to be taking it for some time with regular monitoring of LVV.

I hope I’ve got the time scale right but my point is that apart from the ‘blip’ in April ‘22 my taper has never been rushed as you can see. From my point of view I was in no hurry to finish with Pred as I was on such low doses. Hopefully it has paid off 🤞.

If there is another rheumatologist in your clinic in whom you have more confidence you can ring the secretary for the department and ask to see that person to explain your concerns. It is your right to question any treatment plan made for you as long as you are respectful. Good luck!

[Susan1705]

Hi, I was on methotrexate since diagnosis of GCA June 2021 (I also have PMR since 2019). I have now switched to leflunomide and due to start first dose on Sunday this week. Will see how it goes, am currently on 10mg of pred and due to reduce 1mg every 2 months.

[Smudge-1]

So glad you’re managing well with Lef. I’ve been on it happily for 2 1/2 years now and it helped me get off Pred. But my rheumy has said a few times that it can take about 3 months to build up (or conversely disappear). I had to go up to max dose of 20mg for a while as my Pred got to a few mg but managed to get off Pred about 11 months after starting Lef. I was managing to reduce Lef until last December (had got down to 5mg) but then got Covid and a couple of infections so was told to stop it completely until Covid had disappeared and until a week after stopping antibiotics. This all took 6 weeks but happily to no detriment to my LVV.

[Marko666]

Hi DogAgility, as you know I started Leflunomide last month and due to see Rhumatology next week that would make it 8 weeks since I started Leflunomide, my Rheumatologist told me to stay on my dose do nothing until I see her next week ? As it takes time to get in system then taper I shall see what she says, good luck .

[EngineerMatthew]

10mg of Leflunomide made my liver enzymes go up. I can tell a difference, pain is much less , zero prednisone accept on an occasion. The stuff gives me a slight headache and raises my BP. Calling Rheumy to see if I should continue.

[Manihiki]

I have been on lefludomide for 5 years with no problems but have just come off it because my rheumatologist thinks it’s causing problems with my bone marrow and my haemoglobins keep dropping. I can feel its removal especially in my hands and shoulders.