LVV leflunomide and GI problems

[811Yoga]

I started 20mg Leflunomide and upped Pred back to 10mg just over a month ago having been diagnosed with LVV after 18 months on Pred for PMR. I am having GI problems particularly at night with abdominal discomfort feeling nauseous bit of a cough dry throat. Feeling quite unwell this am. I do take Omeprazole daily and my GP added in 40mg Propranalol when needed for anxiety. Anyone have a similar experience?

[PMRpro Ambassador]

Leflunomide has a reputation for causing GI upsets and that is probably the most common reason for discontinuing it. Were you already on the omeprazole without problems before the LEF? Because it isn't an innocent either!

It is claimed that the adverse effects settle over time - but it sounds as if yours is worsening?

[811Yoga in reply to PMRpro]

Thank you for replying. Yes I have been on omeprazole 17 months and didn't have this previously.

[PMRpro Ambassador in reply to 811Yoga]

I fear really all you can do is stick it out and hope your body does get used to the stuff. It might be worth asking if you can try a lower dose - many doctors seem to dive in with the usual dose right from the start although there is some evidence that starting at a low dose and going up slowly helps reduce the adverse effects. One lady in the charity developed neuropathy at 20mg first time round but seemed ok when they tried again starting at 10mg and later upping it to 15mg as 10mg didn't keep her PMR under control.

You might get more response if you asked on the NRAS forum as it is used more in RA I think, not really used that much here in my experience, there have been a few though.

[811Yoga]

Thank you for that. Do you know of another drug that can be used?

[PMRpro Ambassador in reply to 811Yoga]

Some doctors use methotrexate but I don't know about others, I imagine Actemra/tocilizumab also works for some but that is restricted in the UK so I imagine they keep that in reserve. Maybe that is a question to ask - if any LVV patients are on anything else. And there MAY be some on the VasculitisUK forum who aren't here. There are other pretty hefty drugs used in other sorts of vasculitis.

[SheffieldJane]

I struggle with gastric symptoms and abdominal pain nausea and vomiting. I have given up the medication the offer Leflunomide and omeprazole, they seem to make things worse. I use ginger losenges for the nausea and paracetamol for the abdominal pain ( Panadol) soluable, a gentle diet avoiding foods that are hard to digest. Buscopan seem to help in the acute constipation painful stage.. Plenty of fluids,tiny portions, chew well. Colonoscopy’s just show Diverticular disease. Just living with it day to day. More gastroenterology threatened. Also on Atenolol Beta blockers every day. Just live with it basically. It’s miserable. I hope it passes. I carry chick shut plastic sick bags for cars , planes and theatres. atm. Diagnosis GCA/LVV 4 years.

[Alebeau]

I had daily diarrhea with leflunomide but worse than that numbness in hands and feet - had to stop it after one year (as directed by my rheumatologist) then my PMR started all over again - back to 15 mg prednisone 🙁 kind of a reset

Now I am reducing successfully very slowly without any steroid sparing medication and will absolutely NOT be taking these drugs ever again.

Good luck to you

[811Yoga in reply to Alebeau]

I will bear your comments in mind. Hope all goes well for you.

[Noni71]

I have GCA and LVV diagnosed 2 years ago. I started on 40mg Pred and then Tocilizumab. That really suited me and I felt really well. Unfortunately my year’s supply came to an end and I was prescribed Methotrexate. This didn’t suit me and I was offered Leflunomide. I’ve been taking it since August and am not entirely convinced that it is for me. I have nausea, intermittent diarrhoea and just generally don’t feel well. I have an appointment with the rheumatologist next week so I’m going to discuss the above and see what he recommends. My symptoms take me back to the days of IBS which I’ve managed to control with cutting out gluten. Seems to have stirred up all of my old GI issues.

[Creas]

I don't use more chemicals than I have to. I have omeprazole but rarely use it. I sit up in bed with lots of pillows and drink water and take my pills with food (often a very small amount of food as I don't like eating at night). If you can avoid unnecessary drugs, I think you're doing yourself a big favour!