Leflunomide and anxiety: Hello everyone. I took... - NRAS

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Leflunomide and anxiety

Sidera profile image
6 Replies

Hello everyone. I took Lefluomide for about 5 years. It was brilliant - no side effects and great control of the disease. However, about 18 months ago I started to get really bad anxiety attacks, mostly around my health - convinced I had cancer. Ive always been a worrier but not like this! I struggled with counselling but didn't help. Then I noticed that it was much better if I didn't take the Leflunomide. I stopped taking it altogether in June last year and feel mentally fine now - but the old Arthur is coming back. Anyone else had a similar experience? Would love to start taking it again but afraid the anxiety will come back.

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Kerensa21 profile image
Kerensa21

Really sympathise, not on leflunomide but had dreadful anxiety & sleeplessness on methotrexate & Hydroxychloroquine. I saw a lovely registrar who said you’re taking all these drugs to counteract side effects & not really helping that much & put me forward for biologics. Can you do email & put in writing to advice line how much it’s affecting you? Maybe they can suggest something better that helps your RA with fewer side effects? I did cbt course too but what helped most was coming off those drugs. We all tend to blame ourselves for mental health side effects I think. Not much fun if it’s making you miserable, good luck x

Gracie2019 profile image
Gracie2019

I was on Lefluomide for only 5 months. I didn’t recognize I was having severe anxiety/panic attacks (no doubt caused by the drug) because they stopped when I stopped taking it. My rheumy took me off it because my hair was falling out like crazy...

My time on it was awful. Good riddance.

Jesnaskah profile image
Jesnaskah

Tried lef for 8 days and gave me neuropathy like you wouldn't believe so I quit it. Sorry, I can't offer more. But meds can cause all sorts of side effects... Good or bad, and differs for us all. The good news is that you correlated the 2 together... So you have a good understanding of why you're feeling more anxiety. Maybe starting off with a "softer" drug, such as Plaqueinil can help, I'd say discuss with your rheumy in depth. Gotta keep our mental right. It's all we got left...

I wish that I had never taken leflunamide, It gave me a peripheral neuropathy that affects my lower legs and feet, although very variable it can be very painful at times

Chrissycl profile image
Chrissycl

I was exactly the same on this, I used to be confident and not over worry till I started taking Lefluomide. I because so anxious about little things, even had a major meltdown over losing a single hair because I'd been told it could happen and I was on holiday in mexico at the time. The normal worries of day to day living became mountains not molehills. I stood it for so long then told Rhuemy nurse I couldn't the pills anymore and wouldn't ever take them again.

Within a few weeks of stopping them I was back to normal.

Sidera profile image
Sidera in reply to Chrissycl

Thanks so much for sharing this. Thought I was going crazy! Unfortunately was far the best thing for the rheumy so am back to square one on that score. Hope you keep well.

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