Leflunomide

[rose49]

Hi i started on leflunomide 10mg daily eight days ago but at the time i was suffering with extreme pain with sciatica and was on codeine and morphine so i didn't notice any side affects, so much was going on but now that i am off these drugs i am feeling a funny sensation in my throat down to my stomach and i seem to have a lot of flatulence and my bowel dosn`t seem right plus my head feels a little racy is this normal.

I was so hoping that this one would work as i had been on methrexate for over a year and didn't feel well at all on that. Has anyone any advice for me.

[cathie]

Thanks for asking this question - I'm hoping to 'get' leflunomide and will be interested in any comments. Had to come off mtxate because of liver problems.

[Kathyfitz12 in reply to cathie]

I came off Mtx because of horrendous side effects that appeared after six years for no,apparent reason. All my blood tests were normal but I had headaches,dizziness,nausea & generally felt awful.

I started on 10mg Leflunomide a month ago & have had no obvious side effects....so good luckIn "getting " it.

I am having to pay (£21 a month) for it myself.,supposedly as my GP now says " until you have taken it safely & your rheumy agrees" . I wonder if anyone else has a GP who says that.......when one hears that people presenting in this country with no record of contributions apparently get all their prescriptions free!

Good luck with Lefunomide, Cathie.......Kathy

[cathie in reply to Kathyfitz12]

Where are you Kathy?

[Hidden in reply to cathie]

Cathie, you and I share an experience with mtx but time has passed and we are going to try it again. I'm on week 3 of it so the blood test today will decide. I felt so much better on Leflunomide daily.. I went off of it because I no longer needed it a couple years ago. My liver was a little upset at that time over it.. I am going to my appointment to ask to be taken off MTX and put on Leflunomide.

[rose49 in reply to Hidden]

Good luck!! i seem to be tolerating it well just a few things like im a bit racy in the head and my stomach feels odd but so far so good, i do seem to be a bit bloated as well which i didn't have on MTX but time will tell.

[bassiefromholland]

Hi Rose, I used leflunomide for 12 years. I had good results till I got neuropathy under my feet. I advise you to contact your doctor. I wish you all the best.

greetings Bas from the Netherlands

[bassiefromholland in reply to bassiefromholland]

By the way, It took about 2 months before I had positive results with leflunomide!

[rose49 in reply to bassiefromholland]

Thanks for that i hope its the same for me.

[rose49 in reply to bassiefromholland]

Thanks i booked an appointment for Friday.

[bassiefromholland in reply to rose49]

I wish you good luck on friday!

[Nurseratchette]

Hi I to have found bowels and wind issues your not alone

[Kathyfitz12]

I have been on Arava (Leflunomide) for just one month. 10mg per day.

I came off Mtx 6 months ago after taking it very successfully for .6 years.....I then developed all the symptoms inhad when I first had RA...even down to pain in my jaw!

My Rheumy reckons those who had a good run on Mtx usually do well on Lefumomide, but I am wondering if it's working for me as I have no symptoms at all- but as I have had a few steroid injections maybe any symptoms I might have had are being masked?

I'm sure like a lot of us with this wretched disease I am fed up to the teeth with how it rules our Lives!

[Cagsie]

I had to come off MXT due to horrible side effects. Been on Leflunomide for a few years now, took a while to work. Apart from that no problems, feel like me again. I know we are all different but you can but try it. Hopefully it will be right for you

[LS1957]

It took about 3 or 4 weeks for it to settle down but when it did it worked extremely well for me until about a year in when my body started to reject it - keep going it could be the one x

[Someonesmother]

I got leg swelling, neuropathy and a bit muzzy in the head so yes it could well be that

[Hidden]

stomach to throat sensation can be acid reflux.

the bowel problem can be from residual Codeine and morphine.

Flatulence might be the bowel becoming un-relaxed from the pain pills.

That means that you will become regular with bowel movements again.

Your head feeling a little racy can again be from the pain drugs being

withdrawn.. there can be a number of other reasons for what you

are experiencing if you are like I was when I came off the oxycodone

over a weekend. Good luck, my dear. Hope you start feeling more

yourself. =)

[raymik]

I had taken leflunomide for many years and have quit due to severe stomach issues which is a side affect to this medication. I have quit lefunomide and don't see any relief from stomach issues. Leflunomide worked great for me and wish I hadn't stopped and have since started Humira. I am experiencing joint pain while on Humira.

[Coriander18 in reply to raymik]

Just come off Leflunomide (only on it 12 weeks) and ditto stomach problems not sorted after 2 weeks off of it (second time I've come off it last time was 6 years ago.. it worked okay at first but was hospitalised with stomach issues twice before doctors realised it was Leflunomide last time).

After effects even work this time. GP is sending me for a scan.... but I recognise this withdrawal from last time.

Hope your biologic works soon. When I first started Cimzia after 2 weeks I forgot I had RA. Have been in remission for nearly 6 years until recently.

[Amy_Lee]

Hi, I am so sorry to read so many of you cannot agree with mtx and leflunomide. I am on these 2 since many years ago. I think my own experience may help hopefully.

I started with mtx and prenisolone in Jun 2014. I had a lot of side effects which I complaints to my rheumy. She said that those side effects were nothing as compare to the benefits mtx would give me. She suggested I just tolerated with the side effects and she would keep an eye on my liver function.

In Nov 2014, my rheumy suggested I cut off prenisolone slowly. I took less than 2 months to cut it off totally without any problem.

Since my recovery was rather slow according to my rheumy, she added leflunomide to me in Jul 2015 and she called that the double agents treatment. I continued to have those bad side effects. In addition, my ALT started to go up high in Oct 2015 blood test results but my AST reading was still good.

In Nov 2015, since my RA was under good control, my rheumy declared that I was in remission. In Jan 2016, both my AST and ALT readings were normal. Came May 2016, both the readings were double the normal ranges. My rheumy decided to reduce mtx from 20 mg to 15 mg a week.

In Aug 2016, both AST and ALT came down to the normal ranges. Unfortunately, in Oct 2016, my AST and ALT went up again. They went down to normal again in the next 2 subsequent blood tests. Unfortunately, they went up again in Aug 2017.

My rheumy decided to reduce mtx further to 7.5 mg per week but maintained leflunomide 20 mg daily. I stopped vomiting at this stage when mtx has been reduced. Basically except vomiting, all the side effects were stopped after more than a year of mtx. Both my AST and ALT have been very good since.

In my case, I find mtx gave me all the side effects instead of leflunomide as they came the moment I started mtx and went off after a more than a year. I started leflunomide a year after mtx.

I have been keeping very details and good records of my blood tests and the medicines that I take since day one. Hence I can refer to them easily. I used to question my rheumy if there is any reading outside the normal range and I could monitor my own condition well too.

Above are my own experience, I hope it helps.

Amy