Leflunomide and anxiety

[Sidera]

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.

[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]

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]

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...

[ROBERT_CARMICHAEL]

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]

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 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.