Scared to start Leflunomide

[katidid]

Is anyone on or taking Leflunomide? My rheumatologist has been advocating for it for over a year and given my Lupus raging worse than ever - it’s out of control- he wants me to go on it. I’m on Stelara but the COVID vaccine rendered it basically useless. And I don’t have another shot for 2 months.

So right now they are pumping me full of steroids and diuretics (I have full body edema right now).

But he wants to go after this with a sledgehammer and add Leflunomide. I’m really scared b/c you can’t get pregnant on. The damage to the fetus is so severe. Not planning on kids at my age, but if it can do that what is it doing to the rest of me?? Also, some of the side effects are worse than all the other immune meds I’ve taken.

Any feedback or supports would be so appreciated.

💕 to you all

[cathie]

I think you have to balance what uncontrolled disease is doing to your body too. Difficult balancing act isn't it.

[Elle2701]

I’m of a mind I’m willing to try most things. I tried leflunomide, but unfortunately it gave me migraines. The higher the dose the worse the migraines. I didn’t have any other side effects. Have tried methotrexate too, but that was a no. Sulfasalazine didn’t do anything for me, but I had no reaction at all.

I think you have to weigh up and decide in your mind what you are prepared to compromise and what good things you want out of life. Maybe trial it for a few months, if you get any bad side effects you can always stop it.

I hope you’re feeling better soon. I know too much to juggle but take the good days when they come

[Florence91]

Hello Katidid, sorry you are having such a rough time. I agree with Cathie that this is all a balancing act. I took leflunamide along with methotrexate, pred & hydroxy some years ago when none of these were working for me and it stopped the flaring after a time. It did reduce my resistance to bugs so I had a couple of nasty chest infections but I had few side effects for some time. It was stopped after nearly 2 years when I began to get some signs of neuropathy in my feet, but had done its job. The neuropathy has not progressed and my lupus has not been so severe again nearly a decade on. If you are in deep trouble with your lupus, perhaps not much to lose for a trial of the drug? Wishing you all the best.