Leflunomide - in hind sight

[Alebeau]

Just an update on my Leflunomide experience.

Initially was taking 20 mg Sept 2021 and was immediately feeling side effects dizziness & weakness along with daily diarrhea.

I stayed with it as I was finally reducing prednisone successfully and went from 10 to 5.5 by Oct 2022.

Reduced to 10 mg/day leflunomide in Sept 2022.

However, the worst side effect was increasing neuropathy in my hands and feet. Rheumatologist told me to stop in Nov 2022 and take Olestyr for 10 days to speed up the flushing of leflunomide.

That was a big mistake I think as it also flushed the prednisone too quickly and in 3 days I was train wreck.

I stopped the Olestyr and will let the leflunomide slowly fade away.

Now I have had increasing PMR symptoms once again so am hovering at 8 mg Prednisone to try and find my happy spot.

In hind sight I am really not happy I took leflunomide at all as my hands and feet are still quite numb and worrisome.

Beware of this option if you are pressed as I was to give it a try.

[PMRpro Ambassador]

I know someone else who developed neuropathy but when she stopped and restarted with a low dose and built up slowly it seemed to be better. I have to say, it is the adverse effect that scares me most!

[Alebeau in reply to PMRpro]

It seems like the numbness is improving verrry slowly so I am hopeful for more improvement in the coming months.

I would definitely refuse any more Steroid sparing drugs and simply stay on prednisone for as long as it takes. Gor me it might be forever as after 4 years I am still struggling with now 8 mgs.

Will consider starting tapering again after Xmas.

Thanks as ever for your input.

[PMRpro Ambassador in reply to Alebeau]

Early days! People get off after as long as 10 or more years!

[powerwalk]

Oh sound awful for you. Hope it clears quickly. Thanks for letting us know. Best wishes.

[PMRCanada]

Thanks for sharing your experience. There is likely some fear and hesitation when starting a new steroid sparing medication, combined with hope that it will achieve the results we are seeking (and can’t seem to achieve with pred alone).

Sorry to hear that you are still living with the fallout of this medication. Yes it “worked”, but at what cost. Here’s hoping the numbness improves over time.

[Alebeau in reply to PMRCanada]

Thanks for your good wishes.

It was a big decision and we are all faced with pressure from our doctors to "give it a go".

I held off quite a while (in year 3 of PMR) and then took the chance.

[golfnutter]

I can completely relate to your experience with Leflunomide. I ended up with neuropathy in my feet, terrible diarrhoea and a lack of appetite . Even the smell of cooking made me nauseous. . I took myself of the drug and over time all those symptoms disappeared. I’ve nutted it out my reducing ever so slowly tapering half a mg once a month. Down to 3mg and fingers crossed will eventually get off the prednisone. No guarantees however 😉. Hang in stay strong. PS ,my third year of PMR….

[Zebedee44]

Thankyou for posting this. It is disappointing to read that this steroid sparing drug is not the answer to our prayers at all.

Fear of the side effects has resulted in my still having unused boxes of leflunomide for over a year now, during which I have managed a slow taper from 8mg to 6.5mg. I’m almost six years in to this journey and reckon I’m in for the long haul while I negotiate with my adrenal glands.

Happy holidays, Alebeau

[Nightingales]

sorry to hear this. I was just about ready to give it a try as I have been on various doses of pred, now back to 20. So few options. A blood test showed I shouldn’t take Azathioprine and this was the next suggested by my rheumatologist in spite of my raised LFT. I feel like I have to try something because I can’t prevent these flares however slowly I taper and I have a lot of side effects becoming worse now. It’s all so stressful!

[PMRpro Ambassador in reply to Nightingales]

The bottom line is that however slowly you taper, you will not get below the dose you are actually looking for: the lowest effective dose. That is the dose that is just enough to manage the daily dose of inflammation. Go even slightly below that and the dripping tap will fill the bucket and eventually overflow. Every time you forget that and end up in a flare it gets harder. If you flare at a similar dose every time that is your body telling you you had arrived.

What are the side effects that are causing problems?

[Nightingales in reply to PMRpro]

Thanks for replying PMR Pro. Yes, mine seems to be 12.5 before I get a flare of symptoms and high ESR and CRP. I have developed Diabetes type 2 so on Metformin x2, dry macular degeneration, retinopathy, cataracts, high bp, muscle weakness, osteoporosis and the usual Cushingoid appearance, rashes. But I do love my prednisolone lol. I would prefer 20 a day, although I never feel really well. I have DDD and osteoarthritis. My rheumatologist looks like the scream emoji when I tell him my dose .

[PMRpro Ambassador in reply to Nightingales]

You sound to be part of a small group of us who have something more than the average PMR! I have been very lucky in being somewhere where my rheumy can use TCZ and it has got me to a much lower dose of pred - until the Covid booster triggered a bad relapse of my atrial fibrillation and I need 10mg again to stop that. Which is still noticeably lower than I've needed for the last 3+ years.

I would love for the half-dozen or so of us on the forum to be investigated - it seems to be a very specific form of PMR. Or something!

I don't have any of your bugs, bone density is fine despite no AA, eyes very healthy a few weeks ago, tiny signs of a cataract, I'm 70 and been on pred for 13+ years, no diabetes ( have eaten low carb for years), BP well controlled on medication, not really Cushingoid any more (thanks low carb), just cuddly

[phebamom in reply to PMRpro]

I was on the pred/flare yoyo for years until rheumatologist decided "enough". I am now on Actemra plus 5mg. pred. Rheumy said would probably be on 5mg. for life. BeforeActemra every time pred was reduced SED would shoot up over 90. Now on Actemra plus 5mg. pred it stays around 40. I have several other comorbidities which can elevate SED so hard to say, but 40 is way better than 90.

[PMRpro Ambassador in reply to phebamom]

Except the SED rate is no indicator of disease activity when you are on TCZ - because of the way it works. So difficult to say what it means.

[Skysey in reply to Nightingales]

Hi Nightingales. I have been on leflumonide for around a year now. I experienced tingling and pain in my shin bone, into my foot and in my right hip. However, I think I had these symptoms prior to taking leflumonide. It was harsh on my stomach initially but fine now. I take Omeprazole too which definitely helps. I have been off steroids for many months. When I began taking leflumonide I had monthly blood tests,but now have two monthly blood tests to monitor my condition. While there are cases of neuropathy, it might be worth a try in order to reduce steroids but obviously a big decision.

[Nightingales in reply to Skysey]

Thank you so much for your reply Skysey. Every bit of information helps.

[Nightingales]

yes, reading the posts I think there is a sub group of us who have chronic relapsing OMR. I am waiting for the day that the UK will release Actemra for us.

[PMRpro Ambassador in reply to Nightingales]

Me too - because until that happens, not sure I want to return to the UK! A (very) little bit of me does, but not enough to do it!

[winfong]

Have had no side effects with Leflunomide whatsoever. On the other hand, Actemra gave me a perforated colon. Hard to say what each individual's experience will be on any of these drugs.

[Nightingales in reply to winfong]

you are so right winging. I might as well throw a coin to decide 🥴

[winfong in reply to Nightingales]

Unfortunately, there's a little trial and error with these things. I do have to point out, though, that my experience with Actemra was rare. Not sure about the rate of side effects with Leflunomide.

[Odosmum]

I'm really quite surprised you were prescribed a 'flushing' treatment. Your rheumatologist must have been very concerned that it was harming you. Leflunomide can be difficult to tolerate for the initial few weeks of treatment but once that has settled down, it's usually fairly easy to take.

I take it for rheumatoid arthritis (I was on it when my PMR started) and have taken it for many years now. When Leflunomide alone started to become less effective I started taking Etanercept (a biological) which brought back all the initial leflunomide symptoms - very strange! Moving on to Adalimumab (another biologic) after the Etanercept wasn't working so well was fine.

After so long on leflunomide, I do have some nerve issues in that my finger tips and toes have little sensation. I'm told that my steroid induced diabetes can cause this too, so I'm just putting up with it. After all, leflunomide has kept me relatively pain free over the years and much more mobile than I expected, some 35 years since the onset of RA.

[ab58sf]

Thanks for this advice. I have been started on hydroxychloroquine at 200 mgs and am still on 3 mgs of prednisone. Anyone had a bad experience with hydroxychloroquine or any experience?

[PMRpro Ambassador in reply to ab58sf]

There is one person on the forum on HCQ alone as they can't take pred who does very well. But that is about the only total success story I know of in PMR.

What is important is to have a baseline eye check and annual checks thereafter - it CAN cause serious eye problems and they can happen any time, even after years of being OK as someone posted recently on the lupus forum where it is used quite a lot.