My rheumy has decided the MTX is ineffective and I need to stop. I had a letter to come for BP check and prescription, which I did today. As ever, now I have come home with lots of unanswered questions! I've looked at previous threads but was wondering if anyone else is just starting on this?

When is the best time of day to take this, or does it not matter? I know I have to have BP checked every month, but is there anything else I should know? Thanks, Ailsa

Hi Alisha

I take leflunomide, hydroxy, diclo and 2.5 mg since February and it has not brought my RA under control unfortunately, when I first took it felt very poorly like severe flu so took it at bedtime and noticed a remarkable improvement, it may just have been coincidental but perhaps worth a try, or check with your GP first to make sure.

We all react differently to these drugs and hope this works well for you.

Take care Julia x

I 've been lucky on Leflunomide,having gradually built it up to current dose of 20mg daily. Initially my BP did go up a lot but has now settled down, with monthly checks to make sure it stays that way. I always take mine at night, together with all sorts of other stuff (including Hydroxychloroquine as Lefl wasn't coping too efficiently with all my RA issues). I did find my appetite almost completely vanished for several weeks, (but that was no bad thing,!!!!) and I am honestly MUCH better on Lefl than I ever was on MTx or any combinations we tried in the early days. Recently I have experienced some peripheral neuropathy (tingling in hands, feet, numbness face) but this may well be due to another illness. Anyway, GOOD LUCK with the stuff, hope it works for you, and make sure you keep those BP appts, very important, Love Lxx

Don't think you need the Folic acid now, mine was only when I was on Mtx, but check with "them" as soon as you can get hold of someone sensible. And the TB is only a check IN CASE you have had any signs of it, as Lefl is a no-no then; they sometimes do xrays if you have a history of frequent/ persistent chest infections; if you haven't then don't get too worried about it. Headaches too.......well, maybe the stress and excitement of wanting to watch the match, ...or the weather....or because all these queries about your medication ought to have been sorted out at the clinic and you should NOT have been left with so much to worry you. It's a HUGE thing when they change your drugs, and I don't think they realise just how big it is for each one of us. TAKE CARE and keep posting so we know how you're getting on, Lxx

Hello Ailsa

I have been on Leflunomide for about 3 years with no problems except l developed high BP recently which is well controlled on medication. I originally had problems with MTX (liver enzymes raised) and previously tried Sulphasalazine (moody!) Hydroxychloroquine and Minocycline worked for a short time only. I originally took it with sulphasalazine but it seemed to work so well l now just take Leflunomide. My RA is reasonably controlled with just Leflunomide and l would say to anyone its worth a try, its working (ish!) with no real side effects, for me at least.

No folic acid, just monthly blood tests and blood pressure check, and flu jabs yearly.

Best of luck

Christine xx

Sorry to hear you have had to come off Rubba - hope the problem with your blood corrects itself soon. It is awful to start imagining the worst but hard not to.

My white cell count is up so I have had to get another fbc done this week. Not sure what that means - I don't seem to have any infection.

Interesting what you said about waking with a headache - I have had a couple of dreadful heads in the 2 weeks I have been taking lef - it takes a lot for me to vomit and I have had 2 episodes in the last 10 days. Don't know if it is the lef or something else but I am keen not to have any more! Really hoping this drug works as my crp has doubled in the last few weeks and esr is now 119.

Has anyone had a big success with lef? It seems the only stories I have read are about problems. XX Ailsa

Hello Ailsa and all

AS you know I stopped Llef over 2 weeks now and I have to say my headaches have stopped . I
have had a bad cough and coughs can cause you to have a head ache but even then I have not
had any.

I spoke to my RA nurse who says she has to speak with the Specialist but on holiday for
3 weeks so a wait to find our WHAT NEXT.

Keep in touch all

Hi Ailsa

This was my post last saturday

I take leflunomide, hydroxy, diclo and 2.5 mg since February and it has not brought my RA under control unfortunately, when I first took it felt very poorly like severe flu so took it at bedtime and noticed a remarkable improvement, it may just have been coincidental but perhaps worth a try, or check with your GP first to make sure.

We all react differently to these drugs and hope this works well for you.



Over the past few weeks have been getting worse, my est and crp have gone up alot , hence why in so my pain etc. I tried to get hold of the rheumy nurse, her message inbox was full, my GP faxed an urgent letter to consultant, but after a week no reply. I spoke to GP on phone and he suggested ( like he has told others at his practice in the same position as me ) to see him privately. I went this week, he was very apologetic and went into great detail about under funding and how he can t cope at such a large hospital on his own, it was quite incredible how honest his was. When I did see him in Feb, he was working through his dinner hour so not at all surprised by what he told me.

Anyway, he is referring me for Infliximab, he said he will try and squeeze me in urgently for the first assessment as it takes about 2/3 months to get everything in place. It is obviously not right to have to go private, but to me worth every penny really.

Have a lovely break away , Julia x



For Rose B - hope you had a lovely time with your sister, really hope you get things on the move very soon. Julia x

Hi
I have been to see my consultant today and have had leflunomide added to the mix. I take mtx 20mg, folic acid, amitriptyline, arthrotec 75 and lots od co-codomol 30/500!

I was also wondering about what others have found with this drug so i'm glad of this post.

All these drugs are a worry. I started off with sulph,stopped that and started hydro and then mtx, gradual increases to 20mg. Still very stiff, painful and swollen joints nothing seems to work.

The frustration of not being able to get about and do things is the worse thing to cope with i think.

Love to all

Shirley

Hi Julie

I hope the infliximab will work well for you. I have heard that it is a very good drug for some people.

It is very frustrating trying all the different drugs before the medics find the right one. I understand that really it all boils done to the cost of some of the drugs.

I wish you well.

Shirley x