Leflunomide concern

[Alebeau]

Anyone taking Leflunomide and experiencing extreme weakness? I have had weakness and dizziness a couple of times now and I have notified my GP and Rheumatologist. Started this drug Sept 25 so been about 6+ weeks. Not liking this at all.

Thanks in advance for any feedback.

[123-go]

Hi Alebeau. I have been taking 10mg daily since October 2020 for asymptomatic large vessel vasculitis. I haven't had any serious side effects although I did intermittently experience short episodes of what I would describe as vertigo about 3 months in. This was over a period of about two weeks and passed with nothing since. I also have slight tingling in my toes and am aware that this can be a sign of peripheral neuropathy. I should have mentioned it when I had a face to face appointment in September this year and didn't follow the advice to tick it off on my list of questions I'd prepared for the appointment. This hasn't worsened and some days I'm not even aware of it but if it does worsen or I notice it in my fingers I'll be straight on the phone!

I'm no expert but it's said that Leflunomide takes some weeks to 'kick in' and it may be that your body is becoming aware of this new drug but in any case you are wise to inform your rheumatologist.

I'm not suggesting that you are a heavy drinker 😏 but alcohol consumption should be avoided or kept to a minimum to avoid kidney problems. Also, if you take any herbal supplements your rheumy needs to know.

I do experience some tiredness when I've been busy but that's soon remedied with my favourite pastime-a lie down!-but I wouldn't describe this as weakness.

I hope that you get some reassurance soon.

[Alebeau in reply to 123-go]

Thanks for your reply. I am taking 20 mg daily and I am hoping this second period of weakness and dizziness will pass soon.

I hardly ever drink alcohol.

I will be seeing a new rheumy in January and I will give them a list of supplements I take as you suggested. The previous rheumatologist had that list so I hope it was passed along.

As you say it takes a good 2 months for this medication to be a benefit in terms of Steroid reduction. I will be patient.

👍

[lindyloy in reply to Alebeau]

Hi Alebeau, I took Leflunomide for quite some time, it didn't work for me in the end but I did o.k. except for toilet troubles (which the Rheum. warned me about, but it stopped as soon as I came off the drug). I was nearly always tired at the end of the day, Iwas also on 20mg. a day like you. I know inject with Tocilizumab and have just finished taking Pred. This is also not perfect, and has its drawbacks!

[Alebeau in reply to lindyloy]

How long did you take it?

Thanks

[lindyloy in reply to Alebeau]

Hi Alebeau, I checked my diary just to be sure, I was on it 2yrs. I started on 10gs. but the Rheum. increased it to 20mgs. later. I also had dizziness which didn't have anything to do with the Leflu. because I was told it was probably Meniere's disease. (sorry, just realised I said 10gs. of Leflunomide, instead of 10 mgs!). I got off Pred. but had to go back on it at a small dose cause of aches and pains.

[Alebeau in reply to lindyloy]

Thanks

I really think it is the drug causing this symptom but I am getting through it ok. Have had two or three episodes so far - the last one being the longest.

I also have the frequent toilet trips - one annoying drug!

Two years is a long time - I may well give up if these symptoms continue too long.

I appreciate your feedback.

[lindyloy in reply to Alebeau]

Do you have any deafness in your ear when you have the dizziness? A lot of people don't like the no alcohol rule, but I managed o.k. It did help me taper the Pred. and kept my blood markers lower than I had ever had, so it wasn't too bad, maybe you could talk to your Rheum. about lowering the dose?

[Alebeau in reply to lindyloy]

No deafness and no alcohol. I think it's got to be the Leflunomide but I will see the Rheumy in January and see what she says.

Thanks, good to hear it works, I am waiting until the 2 month mark before I consider lowering the Prednisone a bit more. My ESR doubled since last month so not anxious to reduce till I see an improvement.

[lindyloy in reply to Alebeau]

I think it takes about 6months to kick in, as I said, I tapered 1mg. a month and it helped me a lot. Good luck!

[Alebeau in reply to lindyloy]

Thanks 😊

[123-go in reply to Alebeau]

Well, that's 10mg more than me so perhaps at your dose more or stronger side effects are felt- who knows really? As long as you keep in close touch with your Rheumatologist and report anything of concern you should be on the right track.All the best and keep in touch, please. 🥂 - non-alcoholic, of course 🙂.