Taking MTX & leflunomide - updated

Wonkylegs

HI,

really fed up after a month of one infection after another.

have been taking Leflunomide for a couple of months in addition to the MTX injections. Started at 10mg but since they upped it to 20 mg things have got tricky. only managed a couple of weeks on higher dose then the rot set in.

missed 4 MTX injections in a row, due to
1- mouth ulcer (kept taking lef)
2 - UTI - stopped lef for 1 week
3 - stinking cold - restarted lef when recovered
4 - mouth ulcer AGAIN!

GP is not very sure what to do, have rung rheumy nurse and waiting for them to get back to me. The tough bit is that I feel that the Leflunomide is really helping - I haven't missed the MTX injections anywhere near as much as I have in the past - so I am terrified that they will take me off it.

just wondered what others on this combo are advised to do when they get infections ..... I know to stop the MTX for mouth ulcers, but not usually for the LEf .... so I'm told., but now I have to because there have been so many infections in a row. :? :? :?

Furious with arthur this time!! :roll: :roll: but he's not going to stop me .... I WILL WIN but I fear the battle may be a protracted one this winter :roll: :?

debsmartin

Hi Wonkylegs

I can really sympathise with you I take 20 mg of MTX (tablets) and 20mg of leflunomide but I too have suffered terribly with mouth ulcers, but I also get the runs terrible as well but I too feel that the leflunomide has really helped me. I have never been told to stop taking my mtx though my nurse said I could leave the leflunomide off if I couldn't cope with the runs or the mouth ulcers but I'm too scared to do this because I really feel that they help me. I too am interested in what other combinations that there are. My husband said he can't see how the tablets stay in my system long enough to help me with having the runs daily. I am back to see the doctor next month so I guess I will have to see what he says

debs

scattered

Why do you stop the MTX for mouth ulcers? I never used to have to stop mine for an ulcer. I got special gel from the dentist and increased my folic acid to help with them. My RD just saw them as an inconvenience - even when my mouth was disintergrating I didn't have to stop the MTX, just up the folic acid intake.

I'm afraid I don't have any sage advice on either of the meds: they both pooped out on me, and caused unthinkable side-effects while doing so.

Good luck with them.

mrsdalloway

Hi Wonk you are not having a good time at the mo are you? I was on lef for about a year in total and it did naff all for me, although they kept trying to push it on me (think the nurse was on a commission myself!) So I came off that. I make no bones about the fact that mtx is evil and made me really ill. At the mo I am on fortnightly injections of humira and it has been fantastic I have no side affects at all, am also on sulpha and naproxen and touch wood this all seems to be working.

I don't think there is anything you can do when you get infections you have to come off meds for a little while. The only thing I would suggest is can they do anything to boost your immune system? I take fizzy tabs from Boots which have zinc and vit c in and so far have managed to avoid infections and I have two germ infested kids constantly coming home from school with one thing or another!
x

Wonkylegs

HI & thanks for your replies.

Still no wiser today - as the rheumy nurses rang during the 30 mins that I was walking the dog and hubby didn't think to give them my mobile number :roll: so they are going to ring me on my mobile whilst I am out and about tomorrow. not ideal when I'll be driving and taking mother-in-law to see her GP, but needs must

Hi debs - I know what you mean about the runs :oops: but I am taking co-codamol as well, and they usually have the other effect :roll: , so things seem to be equalling out for me most days maybe you take them too?

HI Scattered -
I stop the MTX because the GP, Rheumatology nurses & the info on the meds says to stop if I have an infection or a mouth ulcer. They say that the reason for this is it is not advisable to further suppress the immune system when there is obviously an infection present (eg. UTI, mouth ulcer etc) and to continue taking the meds would only mean that the infection would be with me for longer and I would take longer to fight it off.

I have never been offered anything else to help with the ulcers, and I already take 5mg folic acid every day except MTX day. My dentist says that there is little that can be done to speed up the healing, but I use a new mouthwash to try to keep them at bay - not much use right at the back of my throat though :roll: :x

HI Mrsdalloway,
I'm never sure about taking stuff to boost the immune system when I take other meds to specifically suppress it :? :? seems to be counter-productive, but not sure if that is my fuzzy logic at work I do eat a lot of fruit and veg though, mostly organic, and I think that does help me.

I'll let you know what I am told.
take care
wonky

debsmartin

Hi Wonky

Thanks for the saying about the co-codomal, I used to take them but I found they sent me the other way too but never thought of adding them back in now I'm taking leflunomide, I will give ita try and hope it works for me too

Take care

debs

Wonkylegs

HI Debs glad to have been of use! at least co-codamol is good for some things good luck!


well finally been in touch with Rheumy nurse and talked through all the problems I have been having.

I can start on Leflunomide again next week, but going back onto 10mg. so have to get some more tablets as I only have 20mg at home :roll:

I am going to finish the stock of MTX 20mg that I have, once the mouth ulcer has healed, and then go down to 15mg and hopefully then we can put the leflunomide up to 20mg again.

Fingers crossed that Arthur has had enough for now and I can get back on top of everything!!!!!

oh, I have been told that MTX stops if I get a mouth ulcer but leflunomide doesn't neeed to unless I have repeated infections (I think!!) so I think I knwo what I am doing ..... but will wiat for the letter and see if we both agree on what we agreed on the phone :roll: