I have been on Leflunomide for over a month. No really issues. Then all the sudden when I eat I cramp in my torso like a food allergy and get the chills. Antihistamines don’t help. Probiotics either. Has anyone come across this.?
Wonder why it would start now.?
I will say I am sleeping better with this med than with all others.
I’d discuss this with your rheumy team….it may or not be connected with Leflunomide……but I think we do tend to blame our RA drugs when in fact symptoms are caused by something else.
Leflunomide didn’t help my RA at all ..but it did completely remove my appetite….so much so that I lost a huge amount of weight in the short time I was on it….when I stopped it - my appetite returned.
It caused me more pain about 8 weeks in then it just stopped and worked brilliantly for years. Remission and would not have known I had RA. Make sure you're taking it with food and I hope you've been prescribed a PPI or similar to protect the tummy. It might of cause be nothing to do with LEF so it'd be best to contact your RA team but for me it was best drug by far for years.
I've been on Leflunomide for about a month also. Been taking it with the MTX and i feel great flaring gone swelling gone, no more struggling to walk. Lost weight and from my latest blood results they found its damaging my liver. Seen the rheumy nurse yesterday and she's asked me to stop taking it. i dont want to, i havent felt like this for a long time. Am stuck between a rock an a hard place. Am off on holiday for a month on wednesday and a bit worried the symptoms will return, she's prescribed me a load of oral steroids to help. Bloody RA thought i had a handle on it.
I wonder why you are not being put on biologics as they are not hard on the liver. Also, why not drop the methotrexate instead of the leflunimide. Methotrexate and leflunimide are both hard on the liver. Usually they are not prescribed together.
Thanks smiles, i never knew that about biologicals being less harmful on the liver. My liver has coped very well with Mtx and my bloods have always been good. After adding the Leflunimide my liver started to detoriate. I did ask about better drugs if i stopped taking it. It seems i have to keep contacting my rheumy help line and reporting more often when flaring instead of just putting up with it. Make more of a fuss. I'll push for biologicals when i return from my break..
so sorry to hear this is happening to you.
honestly I think you should go see your GP or Rheumy team and they should be able to help you, I have had no problems with this medication once I got over the initial allergic reaction.
I hope this is resolved soon and get well soon. Please let us know how this pans out, love and light
New symptom- Itchy rough ( sorta hard) skin on my face in all areas. Wondering if this is an immune system thing or Leflunomide side effect. I never have “common “ side effects to anything.
if you are still having stomach pain every time you eat then that doesn’t sound good. I know that the methotrexate was toxic for me and once the stomach cramps arrived they just got worse and worse as toxicity rose. I think you need tk call and get advice. No idea about the rash. I feel for you. Hopefully you can try something else.
I was on Leflunomide for only a week as it made me vomit after each tablet and have severe stomach pains. That happened immediately after the first tablet and all subsequent ones for a week. My nurse said let’s stop it as I really wanted you on a biologic so she didn’t try to see if an anti sickness tablet could have helped. I hope you can speak to your rheumy and see if anything can be done if Lef is working well for your joints. Good luck.
glad they took off rather than having you suffer while trying an anti sickness tablet.
Thank you and yes I was relieved my nurse said I’d to go in straight away and discuss re which biologic. I saw you had stomach proverbs with Mtx. I hope you are now settled on something else that’s working well for you.
leflunimide and Cosentyx at the moment. The leflunimide was so much better for me than the methotrexate. Sometimes I think that the dmards will be phased out by the biologics when the biologics drop in price. I think doctors keep people on dmards for too long sometimes considering the side effects. So happy when I read that a doctor has been compassionate and moved forward with biologics despite the price.
Hi Nana, I was on Leflunamide about 6 or 7 years & got on very well with it, with no real effects & it worked to control the RA very well, but it suddenly stopped working around January 2021 for some reason. I didn't have the issue you have with it, though I've been on a Jak-inhibitor nearly a year and a half & consistently have to rush to the loo about 5- 10 mins after taking it with loose bowels! (my appetite hasn't been affected with it).
Do you have to rush to the loo when you get that cramping & shivers? are you bowels affected at all? Hope things improve!
I was on Leflunomide and got diarreah. I had diarreah for 5 weeks! I was so poorly. Once id had it for 3 days they told me to stop Leflunomide and as it stays in your system system for so long after stopping my illness carried on. It was dreadful! I ended up in a & e totally dehydrated.
The first month I had no side effects. Into the 5 th week I did have pain thru my torso that felt like a food allergy and I would go to the potty but no real results. Then this hard sometimes itchy rash formed on my face. I’m beginning to think that is my immune system rather than the med.
I am pleased the pain has stopped with the Leflunomide.
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