Leflunomide - RA sufferer

[azsul]

I tried Methotrexate injections and thereafter tablets over 6 months but suffered severe nausea so my consultant put me on Leflunomide 10mg but it’s not helping control inflammation. The question is what can I take with Leflunomide or on its own that won’t cause me nausea. Any suggestions?

[medway-lady]

Don't take anything without talking to your doctor or nurse and LEF takes 12/14 weeks to really work. I loved it, changed my life but took at a higher dose so might that be worth talking about ?

[azsul in reply to medway-lady]

Thanks. I am seeing the consultant soon. I take Leflunomide 10mg in the evening so not a problem taking 20mg. My only worry is elevated BP and I suspect it may be causing me itching too.

[medway-lady in reply to azsul]

It put me into remission so I liked it but had side effects wore off after a few weeks but it is so slow to work. Frustrating I know and I'm a fan of wheaty bags at night.

[AgedCrone]

As you know RA isn't a disease where what helps me will help you.We don't know the clinical reason you failed on Mtx, nor why Leflunomide does not seem to be working for you...so as we are not doctors we can't really offer any advice.

Have you tried speaking to your Rheumy nurse? She will have your notes in front of her & will be able to review your previous drug reactions & offer you professional advice.

Taking OTC remedies may help you....but get some medical advice before trying anything ...you could easily make yourself feel worse.

It may just be that you need to give Leflunomide a bit longer to take effect !

[azsul in reply to AgedCrone]

Thanks for the advice

[AgedCrone in reply to azsul]

If you can manage it....do try not to stress too much ...you will find something to suit you .......I do know how awful you are feeling at the moment & that you think that nothing will ever work..but IT WILL.

Just give it a bit more time.

[charisma]

Hi azsul

I am on Leflunomide after stopping MTX .

I take 20mg. Tried reducing to 10mg but it failed to prevent a flare. But I had to stop altogether due to infection so the flare took its chance!

Did you mean what other DMARD can you take along with Leflunomide? Best to ask Rheumatologist responsible for your care.

[azsul in reply to charisma]

Thanks will do

[Hidden]

I'm on Leflunomide 20mg. I also take MTX 7.5mg for Vasculitis

[charisma in reply to Hidden]

Hi poems, I am surprised that you’re on both those together. I had to stop MTX for two weeks before leflunomide was started. Not prescribed together here.

[Shalf in reply to charisma]

I was on Leflunomide, MTX and Sulphasalazine and Hydroxychloroquine at the same time!

[charisma in reply to Shalf]

Where was that? Seems like huge overload to me as it would not happen here to my knowledge.

[Shalf in reply to charisma]

In Edinburgh's Rheumatology Department.

[nomoreheels in reply to charisma]

I was on MTX/LEF double therapy Angela. Must be unusual to the UK, England anyhow.

[charisma in reply to nomoreheels]

Definitely not permitted in Scotland!

[nomoreheels in reply to charisma]

I wonder, do you know why?

[nomoreheels]

It's different strokes for different folks & you must know we can't give medical advice, your Rheumy is the one to ask, but we can give experiences & mine is that I took both MTX & LEF but obviously that's not an option for you. What may be is having your dose increased (under supervision of your Rheumy), but it depends on how long you've been on LEF. You probably know with being on MTX but all DMARDs take a while to become effective so if you've not been on it long it could be a different story in a fortnights time. That said if you have been on it in excess of 12 weeks or thereabouts & still have active inflammation your Rheumy can double the dose to 20mg (both 10mg & 20mg are maintenance doses for RD). If you're susceptible that could cause an increase in BP so that needs to be considered, whoever does your drug monitoring bloods will take it. Another option is double therapy, adding another DMARD, sulfasalazine is a possibility. If you don't already take one an NSAID can help control inflammation & can again be prescribed by your Rheumy.

All this is assuming your Rheumy isn't happy with how well your disease is controlled. Your bloods may show differently & he needs to examine you of course so hold on in there. Use the time til then to make notes & discuss your feelings at your next appointment.

[azsul in reply to nomoreheels]

Thanks a lot. Most helpful.

[SaneJane]

I can't answer your question as asked. But, no matter what you're doing with medication, it's well worth your while to research and try overhauling diet with a very serious anti-inflammatory diet, exercise (as possible), stress reduction, and consistent sleep (aiding with ritual and whatever else that helps and is not harmful. Never rely solely on medication though you may need it while working with the other methods of reducing inflammation.

[azsul in reply to SaneJane]

Thanks. Much appreciate advice.

[Dudds]

I couldn't control the nausea either on methotrexate. I am now on biologic medicine and no sickness at all.

[pd118]

learnt to do exercises to toughen belly swim once a week

[Ailsa-NRAS Partner NRAS]

Hi

Just to flag that should Lef. not work ultimately, if you have not responded to 2 DMARDs one of which is MTX over a period of 6 months, if your DAS is >5.1 you may be eligible to try and biologic/biosimilar. See our NRAS 'Medicines in RA' booklet for more information about all medicines used in RA, the information will help you and answer other questions.

Good luck and best wishes

Ailsa

[azsul in reply to Ailsa-NRAS]

Thank you

[frechfield]

Hi azsul. Like you I was on the medication you described and also hydroxiclriquin(think that is correct spelling?) I also had some pretty bad side affects( one size doesn't fit all) I've been on only sulfasalazine 500mg×4 a day and have been for 3 months. I've not so far. Had no I'll effect's. You could ask your consultant about it. It may be good for you. It may not. Good luck. I'm sure you will find something that agrees with your chemistry.

[Blackwitch]

Hi azsul

My very 1st RD med was Celebrex which really helped but I was told it was withdrawn due to health scares in the U.S.

Next was Sulphasalazine which was fine until my blood test came back with an ALT reading of over 500. They retested it & it came back nearer 600.

Next was Methotrexate with folic acid.

Next was Hydroxychloroquine - made me sick & gave me an itchy rash.

Next, Leflulomide started but it pushed up my blood pressure so had to stop it as I was having back surgery.

Next, prednisolone tablets made me sick but the IM Depo-Medrone injections were fine for a flare.

Amitriptyline, OK

Gabapentin, OK

Buprenorphine Patches caused sickness & itching.

Pregabalin, sickness.

Duloxetine, felt like I was a zombie with flu.

Now I take Paracetamol 8 per day), liquid morphine when required, Amitriptyline 100mg, Diazepam when required & Depo-Medrone injections 120mg every 3 months.

I’ve never taken any biologics because my RD is none erosive. There are so many different drugs that can be given in different combinations & it doesn’t mean that because they’ve been OK before, they will be again. I recently went back on Gabapentin but this time it made me violently ill.

Everyone is different & everyone can have side effects & allergic reactions to certain drugs. It’s very frustrating & it’s so long between hospital appointments. If you’re anything like me, your GP can offer no help (in 10 minutes?)

The NHS is a nightmare, trying to help but appointments cancelled. I try to keep calm but I think I’m one of the lucky ones. I hope you soon get sorted out azsul, I really do. You have to have the patience of a saint. Nic xx (sorry, I really must keep my posts shorter)!! 🤐

[azsul in reply to Blackwitch]

Thanks for the advice. I hope you get medication that’s really helps you. I have had RA for 15 months so some way to go before I find my right medication.

[CeliacRA]

Methotrexate also made me sick. I had terrible brain fog. The methotrexate lessened the flares, but was affecting my quality of life. I was then put on Leflunomide 10 mg., but it didn't prevent flares after four months. Then tried sulfasalazine, with made me nauseated and flu like. Doctor agreed to try Leflunomide 20 mg per day. Have been on it for 5 months. So far so good. No flares. All liver function tests normal.

[katrina1961]

turmaric im taking plus styroids 3 a day