Leflunomide

[123098]

Hi, has anyone come off leflunomide ?? My bloods came back abnormal especially the liver the rheumatologist is taken me off . I was wondering if anyone else has had to stop the pills and if when they started pain more or less straightaway?

[RosieA]

Hi, I wasn't on LEF for long as I had side effects. My understanding is that it has a very long half life and so I would assume that you would not see a sudden change as the drug does take some time to leave the system. Certainly, it took several weeks for my side effects to abate. Hope that helps.

[Hessie5]

Hi - I am.still on it 4 months now. Shall do a check next week now you have raised this. Hopefully he can replace it with something other. What was your dosage as could they reduce it?

[nomoreheels]

Hiya 123098. I had to come off LEF, it caused neurological problems proven by testing whilst still on it & repeat tests once I’d halted it. Thing is I was on doble therapy with MTX so didn’t miss it too much 8 initially & my MTX was increased to bridge the gap. As with any DMARD though, especially when on mono therapy, you will notice symptoms creeping up the longer you're off it, usually around 3 weeks generally. Did your Rheumy not suggest an alternate replacement given they take many weeks to be fully effective?

[123098]

Not at the moment unfortunately I am stage 4 bronchectasis which has affected my heart. he said my physical problems are more serious then my rheumatism????? It's all pain the thing I am worried about is I can't have mix because of my lungs .however I have noticed the pain coming back now 3rd week on reducing dose I am due to see him in a couple of months hope he can sort it for me. Many thanks for your reply

[rounder]

I had to stop leflunomide because it lowered my neutrophils too much without keeping the disease in check. I have bronchiectasis too, but not badly thankfully, though I do have asthma too. I left off all my dmards for a month with a steroid injection to tide me over, then started abatacept, one of the very few biologics you can take with lung disease. The abatacept has been amazing, I side effects, good disease control, bloods all normal. As a bonus I swapped 70 pills a week for 1 injection.

I hope you get the right treatment soon, but it may be worth asking the rheumatology team about a steroid Jan to help.

[medway-lady]

Yes due to an AKI and it really was ok I thought it might be washed out but the Nephrologist said no it is in the bloodstream for a while but in minute amounts so not a problem. It was not LEF related but still was not allowed to go back on it which miffs me as it worked so well. I'd check again as I have Cylindrical Brochectasis and no problem with Etanercept but wasn't allowed MTX as it didn't agree with me nothing said about lung problems. I've been taking AZA now for 2 years that works well too.