Leflunomide and travelling stress!

[priss58]

I wrote recently about starting Leflunomide but I reckon I can't stay on it. It's given me itchy skin on my throat, a tingly nose and fingers and very loose bowels! Tired but unable to sleep. I travel by train a lot to see my daughter which has been very difficult anyway. I'm terrified of being caught short on a busy train! This has been a very stressful Christmas, and I've got to get home to the north east from the south east on Tuesday. This is just a rant really. Sorry.

[Madmusiclover]

sending you my very best wishes. X

[Mmrr]

I had the bowel issues with MTX whether it was tablets or injections and troublesome mouth ulcers. It was a nightmare, eventually after 11 months I stopped taking it and called rheumatology to say no more (they kept encouraging me to continue taking it and said the bowel issues would settle - they didn't).

Hopefully you can get a change of meds sooner, be strong.

[Gnarli]

Oh that sounds grim. If you could find a pharmacy open it would be a good idea to ask the pharmacist if you can take loperamide to ease things for your journey? I'd be contacting the rheumy team for advice when things open up again. Wishing you well

[priss58 in reply to Gnarli]

I remember the days I could travel with more or less ease! It's worse because of all the delays and strikes, and I'm on my own.I did take immodium yesterday, just one melt, did help a bit. (Funny how we don't mind talking to strangers about our toilet problems!) But yes, I'll be calling the rheumy dept on Wednesday. Have a relaxing Boxing Day x

[cathie]

I couldnt find this on the leflunomide side effects but it has been a problem for me too. I regularly do a 5 hour journey by car, I eat as little as possible beforehand and take an immodium instant before setting out and another if I have a hint of problems. This doesnt solve everything but it does work usually. Good luck and thanks for drawing attention to this side effect of leflunomide.

[priss58 in reply to cathie]

Hi yes, it's listed as a side effect in the Versus Arthritis booklet, and the nurse mentioned it. She said it was not a huge problem. But she doesn't take it! I had no problem like that years ago on MTX. So yes, eat little, have immodium. Oh the joys!

[cathie in reply to priss58]

I hope your journey goes well. Just started snowing here (edinburgh)

[priss58 in reply to cathie]

Oh no! I'm down south right now, and travelling to my home in Durham tomorrow. The train starts at Edinburgh to London, and goes back up. I really want to go home!

[cathie in reply to priss58]

don’t worry the snows gone now!

[priss58 in reply to cathie]

Haha! I hate snow!

[Tardebigge]

I have tried leflunomide several times in addition to Etanercept but the side effects proved intolerable, even on a lower dose. I had itchy skin all over the place, very untrustworthy bowels and then intermittent bladder leakage as well. Since it had no demonstrable positive effects for me I gave up eventually and have now been prescribed Adalimubab instead of Etanercept and am waiting to start once I have been taught how to inject! I've been injecting Enbrel for nearly 13 years but I understand they have to tick all the boxes! Sometimes drugs just don't suit you, I can't take MTX either but am very grateful to have been offered other drugs to try.

[priss58 in reply to Tardebigge]

The drugs I've had is quite a long list over the years. The only one that suited me 95% of the time was Rituximab. Hopefully I can go back on it. I had Enbrel but wasn't good for me. Interesting you should mention itchy skin, all round my neck and on one leg, so itchy! Back to the drawing board.

[cathie]

This conversation is very helpful to me. I have had unreliable bowels and itchy skin so I wonder if leflunomide is responsible. I'm due a conversation with GP on the 4th so this will be useful. They've been worrying about some marginal blood results and I'm going to ask them to desist - its too anxious making so it feels like being hounded. I hope you can go back on rituximab. Its worked well for me, my only worry is how it doesnt seem to help the vaccine to work. C

[Beastpig1]

No worries. Sometimes we need a good old rant! I never got on with leflunomide either. Hope you get it sorted soon x

[Gillyflower70]

Really feel for you and hope today’s journey went smoothly. I also couldn’t tolerate Leflunomide. Sometimes a bit of a rant makes us feel better! Good Luck with getting your meds sorted out.

[priss58 in reply to Gillyflower70]

Sadly, my journey could not have been worse. I didn't make it home due to so many people trying to get on a train into central London, I missed my home train. Stuck. So had to rebook and trying again today. I'm exhausted already.

[Gillyflower70]

Sending strengthening good wishes! I’m sure home will be a very welcome beacon! Head down, keep going and I’m rooting for you as I’m sure many of the lovely people on here are!

[priss58 in reply to Gillyflower70]

Thank you . Tricia x

[lucymead]

Lefloumanide is the Cause of my Collagenouse colitis. I reapeatedly told my Rheumy team it was causing explosive Diarrhorea that was 5 years ago. They begged me to stay on it as it was the only Meds that worked for me. I was diagnosed with the Colitis thing this year and the specialist said Lefloumonide was the cause. Side effects are a warning your body is in trouble ignore them at your peril. some people cannot tolerate all meds.

[priss58 in reply to lucymead]

Hello, Lucy. Thanks for answering. I'm going to start coming off it because I have the diarrhoea thing and quite frankly, it's making me nervous. I'm very thin and can't afford to lose weight at my age. Plus I've had a pain low down on my left side just before the groin area. I've had it for years on and off, and it relates to dodgy gut (undiagnosed) but you know your own body, and I know it's not right.

[lucymead]

You do need to listen to your body but please don't do it because of my situation. Chat with your rheumys and GP. You have to have them on your side. Just be honest and tell them how bad it is. I took many photos of poo and made a pain and distress diary so they could see how severe it was. When they still didnt listen I paid to see a Gastrologist who knew the problem straight away. he contacted NHS and insisted I had a Sphigmoidoscope and they took biopsies. that proved positive. Good luck hope you are sorted soon whatever the cause is.