Leflunomide and surgery..

[Sapphire1701]

my second post this week, having quite a week..

I’m having surgery next Wednesday on my right foot for Morton’s neuroma (had left foot excision 6 months ago).

At the pre-op the nurse had never heard of Leflunomide and had to google it as to whether it needs to be ceased pre-surgery. She couldn’t find definitive answer so contacted my surgeon. So 2 days ago I then receive an email from her saying surgeon wants me to stop Lef due to wound healing issues.

I’m only 10 weeks in on Lef and yet to feel much relief, pain, has been worsening since j stopped MTX 3 months ago. But aware they will want me to have been on Lef for at least 12 weeks before taking a view. So I really don’t want to stop it,, and be back at square one.

So I reached out to RA team, and nurse replied to say mg Rheumatologist says I don’t need to stop Lef from his perspective, and my surgeon should follow guidelines and discuss with him direct.

So now I’m just wholly confused. My surgeon is very hard to get hold of and rheumatology is about 2 day reply.. and there’s only now 5 days till my surgery. So I’m basically going to have to decide for myself.

I know we can’t give medical advice here but if anyone else has experience of surgery whilst on Lef would be interested to hear what they were advised.

I have researched myself and it does seem there is a marginal increase in wound healing specifically with leflunomide over other DMARDs.

In so much pain daily atm with my knees - RA started in knees for me so the idea that I’m going to be unmedicated and have to restart, so start again, has really upset me. Albeit I need the surgery as my foot is bad too! And obviously don’t want to increase infection risk etc..

really so confusing.. I don’t know what to do.

[medway-lady]

I hope this operation goes well, I’ve had it done and it worked so well. We can’t give medical advice, the only thing I can say is advice differs depending on your doctor. I wish I could say more as I also took LEFat the time and was advised because it has a long life it didn’t matter. It was still in the body if stopped anyway. That maybe why it’s confusing. It’s minor surgery so good luck and happy feet.

[Amnesiac3637]

This shouldn’t be up to you to sort out and should have been done definitively at pre-op. If your surgeon wants you to stop Lef then you should stop it as he/she has ultimate responsibility and trumps the rheumatologist in this case. Lefluonomide stays in your system so even if you’re off it for a couple of weeks it won’t matter that much and you’ll be back on it very soon after you’ve healed.

If you are still concerned you’ll have to email your surgeon’s secretary daily if necessary until you get a definitive answer but mostly you have to come off your drug if that’s what the surgeon’s protocol is. Best of luck and hope it all goes ok.

[Sapphire1701 in reply to Amnesiac3637]

Thank you and I know.. the pre-op was terrible. The surgical nurse had also never heard of ‘sero-positive’ in relation to RA.. which considering I’m sure many RA patients have surgery surprised me somewhat.

But yes I will follow what the surgeon says.

Thank you.

[welsh12 in reply to Amnesiac3637]

Yes as you may turn up for op and they won't do it. I turned up and they didn't have up to date X ray and they delayed op for another condition till they had x ray

[Teddybear999]

I had total knee replacement 2 weeks ago and Rheumatologist told me to carry on taking Leflunomide so my surgeon carried on with the surgery as planned.

[Sapphire1701 in reply to Teddybear999]

Ah that’s interesting thank you. I hope you are recovering ok..

I heard yesterdst that the reason my surgeon wants to stop is a prior patient of his had would healing issues. But it’s so confusing! I’ve decided to stop as per his guidance.. it’s not hugely controlling my RA, just frustrating to be told different things.

I wish you well on your recovery

[Teddybear999 in reply to Sapphire1701]

Thank you x

[Sapphire1701 in reply to Teddybear999]

Do you mind also if I ask if Lef has started to work for you? x

[Teddybear999 in reply to Sapphire1701]

I have been taking it for around 6 months it is only helping slightly I am going to carry on for another 6 months if no change I will contact rheumatologist x

[Sapphire1701 in reply to Teddybear999]

I’m nearly 3 months and as yet no improvement.. knees are agony where on MTX had barely any pain (but it made me severely depressed which lef doesn’t)

I will persist top.. hope things improve eventually for you x

[Teddybear999 in reply to Sapphire1701]

Thank you Xx

[K2013]

I’ve had 4 minor ops in the last year on lef. The surgeon made me stop the first time. After speaking to rheumatologist she said don’t stop, surgeon is being over cautious and don’t stop. I didn’t for the others and no problem at all. Only time I had to stop was when I caught covid.

[Garnacha]

I was on lef until June last year, I had shoulder surgery last February & was told its fine to carry on taking, I'm also on hydroxy, gabapentin, etoricoxib & sulfasalazine which I was told to continue, but, lef stays in you're system I believe for up to 2 years, so I would take the surgeons advice as it shouldn't make a big difference to stop for a few days.

It's wrong that there isn't a right or wrong way on this, but, fingers crossed it'll be fine.

Good luck with the surgery 😘 x

[Sapphire1701 in reply to Garnacha]

Thank you.. think mostly am just frustrated as pre-op was terrible so am just apprehensive about it all! x

[Mmrr]

I've had 4 surgeries since being on leflunomide and have not stopped taking it. Leflunomide has a long half life, therefore takes weeks / months to get out of the body, therefore there is little point in stopping it a week or so before surgery. My rheumatologist has always advised to keep taking it. I also take Filgotinib (JAK inhibitor) which I stop a few days prior to surgery and restart when the wound has almost healed. Filgotinib is out of the system with 48 hrs or so.

My rheumatologist goes with the view that having a flare is detrimental to wound healing and mobilisation post surgery, therefore the minimal time off meds is best, and no point in stopping those which take a long time to get out of the system.

Stopping meds used to be the protocol, but younger rheumatologist are increasingly advising to stay on meds.

[mrdiggs]

I TRIED LEF-- AND IT WAS A DISASTER.HAD TO GO BACK TO METHOTREXATE WHICH I HAD BEEN ON FOR ABOUT 10 YRS. HAVE NOW BEEN IN A FLARE UP FOR ABOUT 21/2 WKS. AND WAITING FOR THE METHOTREXATE TO KICK BACK IN. IT HAS MADE ME VERY LEARY TO TRY ANYTHING ELSE.ONLY TRIED SOMETHING NEW BEC. MY SKIN WAS SO THIN AND CAUSING ME TO BLEED AND BRUISE AND TURN RED WHENEVER I BUMPED INTO ANYTHING. WHAT A MESS ! THE FLARE IS ALL OVER MY BODY WITH ROVING PAINS EVERYWHERE. BEC. OF THE FLARE HAD TO INCREASE MY PREDNISONE SO PLAYING AROUND WITH THAT AND TRYING TO GET BACK TO MY LOW DOSAGE. WISH I HAD SOME EXPERIENCE WITH MEDS AND SURGERY BUT I DON'T. WISHING YOU THE BEST OF LUCK AND SUCCESS WITH THE SURGERY AND MEDS. DO TAKE GOOD CARE !

[Sapphire1701 in reply to mrdiggs]

Oh bless you.., I hope your flare settles down with time. Thank you for your wishes x

[Beadie]

Hi in july 2023 I had surgery under local anaesthetic on my left foot hammer toe which had crossed over my big toe and I had bone joint removes from that and my dibtoe and a bunion done too, so yhree separate ops . I take 1500mg of salfasalazine twice aday and lefo 10mg once aday, my surgeon checked out leflunomide and salfasalazine and found no issues with either so I never stopped mine, but maybe your mg is higher your rhumi nurse should know keep ringing till you get a response that's their job, mine are great any worries I just phone them.Good luck and I hope you get your op done, I'm now waiting to my other foot done.xx

[Sapphire1701 in reply to Beadie]

Thank you for sharing that.. and yes my Rheumy yes’m said ok to carry on with Lef, it was my surgeon who wants me to stop.. he is being cautious I’m sure. Thank you for your wishes x