Leflunomide.. ?

[Sapphire1701]

Hi, I’m wondering if people could share their experiences with Leflunomide (over MTX).

I’ve just had 5 weeks off medication - was on 15mg MTX subcutaneous - I’ve attempted MTX three times now, and although injections are better tolerated than tablets, I’ve still struggled with side effects. Most difficult one being related to mental health.. my weekly dose can exacerbate my mental health problems quite severely.. my consultant is aware..

The MTX does work for my disease however but having been off for 5 weeks my symptoms are returning and I’m feeling pretty rough so I need to go back on medication.

My consultant would consider switching me to Leflunomide.. this would be my third DMARD in 10 months.

I really can’t face another new medication - I’m sensitive to most - but any experiences (I know everyone is different) would be appreciated.

Thank you

[KittyJ]

if you put that into the search box and filter for NRAS then all past posts about it will come up ( just for some reading until you get replies 😊)

[Anniebl24]

I was similar to you with drug sensitivity. Could not get on with methotrexate or Sulfasalazine. Have been on leflunomide for several years with no problems. It is a no alcohol drug and stays in your system a long time.

[Kati66]

Hi Sapphire

I was in the same boat as you and after being on Methotrexate for 8 months, I was really struggling with the side effects. The consultant took me off that, as well as hydroxychloroquine and left me with nothing. I lasted about three weeks and a major flare happened. I got seen urgently by the RA nurses and they now have me back on the hydroxychloroquine but now with Leflunomide.

Touch wood, I’ve not had any side effects but still waiting for the benefits to kick in. I’ve been on them for 5 weeks now. It’s such a long journey trying new meds, then having to wait 3 months to see if it works 🙄🙄🙄

[gillpalmer]

I'm on lefluomide since I can off mtx the only problem is my bowels played up for a while but otherwise OK it was the best thing for me.x

[Crumble324]

I'm currently on leflunomide after a disastrous time with MTX and have to say side effects wise its been brilliant i havent really had any. Although it's not working I'm still in agony and bloods have worsened so looking at changing to a biological now 😬 but the relief after a really horrible time with MTX side effects this has been a blessing for me.

[spartacus101]

I was diagnosed with RA in March and although 20mg methotrexate did bring the swelling down to the point where I could slowly walk a mile I was vomiting three times a day. I have now been on 20mg leflunomide and 400mg hydroxychloroquine for 10 weeks and am now having problems just standing. I have predictable diarrhoea which, and I know I am clutching at straws, is better than the unpredictable sort. Onward and upwards. I hope it works for you.

[Mmrr]

I have a great sensitivity to many meds and am now on my 10 th medication in approaching 8 years....most of the changes in the early years due to intolerance or them not working.

I have been taking 10 mgs of leflunomide daily, alongside my JAK inhibitor for around 2 years with no side effects. It has helped me, for me far superior to MTX, which I could not tolerate at all.

[Ferret18]

Hi Sapphire1701, I was on MTX tablets and had to go onto injections due to increase in amount. Couldn’t tolerate it at all so switched to Leflunomide. It has been great for me and worked really well. I’ve only had 1 flare in 3 years and after 20 days of steroids I’m now back on Leflunomide with no issues so far.

We’re all different so it is a case of trial and error.

Good luck

[Versus6691]

Hi,

Sorry to hear about your experience with your treatment.

I'm not sure if I'm the vest person to respond but I can see from your post that you are open minded and is aware that everyone's experience is different.

My experience is MTX was the second medication added, first being hydroxychloroquine which has had no real positive effect. MTX sadly made no improvement yo my symptoms and after about 8-10 weeks on, I came down with severe side effects (respiratory) ? Toxicity so this was stopped immediately. Then, once a bit stable from the toxicity, I went on to low dose Leflunomide 10mg, no relief from disease symptoms so this was increased to 20mg. Still no relief from symptoms and in fact worsening joint symptoms and side effects ie severe neutropenia and onset of frequent opportunistic infections so this had to be stopped immediately as with MTX. I remained on hydroxychloroquine but on its own, failed to halt my disease.

I then went onto Eternacept (Benepali) 50mg weekly injection which was brilliant after about 12 weeks, almost felt normal barring minor flares which were manageable and not nearly as bad as before these injections got started. Then I had supply issues(missed around 10 or 11 weeks doses).

My life has not been the same since despite trying to re-start, trying to reduce down from 50mg to 25mg. Another round of major side effects including another round of severe neutropenia and infections almost weekly.

Now on steroids with hydroxychloroquine until a decision can be made as to what medication I will be put on next. I believe that my consultant is thinking about starting JAK inhibitor Baricitinib. I'm now very worried and stressed about this seeing that I've done so poorly with everything that's been tried on me already.

Overall, please don't see my post as negative, this is unfortunately MY experience. MTX is known as a gold standard treatment and usually one of the first line treatments. Most people do very well on this. Also on Leflunomide. I would say go right ahead and see how you feel and just hope for the best and hopefully you'll be free from all side effects. Stay positive and know that the good thing for our condition is that there are many effective treatments, we just need to keep going until we find one that works for us and gives only few or better, no side effects at all.

Best of luck!

[Sapphire1701 in reply to Versus6691]

Bless you, sounds like you’ve had an incredibly difficult time.. this is such a tough disease, constant medications, flares and it certainly takes its toll..

I appreciate you sharing your experience and send you my thoughts.. thank you x

[Lyndy]

Personally I loved Leflunomide, it was really effective but sadly it gave me really high BP both times I tried it … so watch out for that but it can be controlled by meds xx

[Sapphire1701]

thank you for all your replies.. I actually restarted my MTX late last night and felt absolutely hideous today.. having a break it’s reminded me how bad I feel the day after..

my consultant has already suggested leflunomide so I will hopefully move to that. I have exceptionally low blood pressure so hopefully that won’t be an issue.. and also don’t drink..

just so exhausted with it all.. I hate taking the meds but know that it’s needed (contrary to many well meaning people who ask if I’ve tried this or that diet.. which infuriates me tbh). My RA journey has been tough so far, so much change and so stressful.. constant worry… which I know many here also go through.. I hear everyone’s stories and feel for you all so much.

I appreciate all the replies, thank you x

[smilelines]

I would ask to start with 10mg. When you want to go up to 20mg then take a tablet in the morning and one at night. This will help you avoid side effects. I take 2 tables four days a week and 1 tablet 3 times a week. This ensures that I am not running to the washroom. This medicine has been great for me. Basically no side effects. I hope it works for you. Methotrexate was a hard no for me. I will never take it again.