Leflunomide - side effects continue

[Alebeau]

Been on 40 MG since September 25, 2021 and have many side effects including diarrhea, dizziness, weakness, increased headaches, frequent urination and now painful urination. Am awaiting results on an ultra sound but I strongly suspect it is the Leflunomide as my PSA and urine were both fine.

Will see a new rheumatologist on February 3 and am seriously considering stopping this evil drug.

Comments welcome.

73 old male on Prednisone since November 2018 and currently at 8.5 MG

Thanks

[PMRpro Ambassador]

I'd say you have done very well to put up with it this long - they claim the adverse effects improve after a few months. You wouldn't catch me putting up with that catalogue of evil for long!

Have you been able to reduce the pred?

[Alebeau in reply to PMRpro]

Yes, that is the only thing that keeps me going on this unpleasant trip.

8.5 is the lowest ever for me and previously (before Leflunomide) I tried 3 times to pass 10 and always failed.

I would rather be on a higher dose of Prednisone and get back to my normal self and that is what I will tell the new rheumatologist on February 3

Thanks

[PMRpro Ambassador in reply to Alebeau]

That is my feeling - I have had no identifiable problems with pred but the month I took methotrexate was as bad as untreated PMR! It actually resulted in me experiencing effects that are usually blamed on pred that I had never had except on methyl pred, never on pred. I am very reluctant to try leflonimide.

[Alebeau in reply to PMRpro]

Trust your instincts. I was adamant with my rheumatologist at the outset that I would never take methotrexate and she hounded me to try Leflunomide enough that I caved in.

Sorry now that I did.

[PMRpro Ambassador in reply to Alebeau]

To be fair to my rheumy, as soon as I said I wasn't happy, he noted it was tried and not tolerated.

[membership in reply to PMRpro]

I took Leflunomide for nine months.. I didn't notice anything for the first five and it didn't seem to affect my ability to taper the prednisolone. During the sixth month, I noticed the onset of sensory symptoms in my right leg; I continued to take the medication for a further month, but the symptoms increased and any movement I made brought on very unpleasant sensations, although my motor function remained normal. I was unable to get to see , or even talk to a GP, so I stopped taking the drug and reported so to my Consultant. She suggested that the symptoms were 'mechanical' in origin and not due to the medication. It took another month for the symptoms to disappear and now everything is perfectly normal .. although I am still trying to taper the steroids.. have managed to get to 6mg. without the help of leflunomide!

[PMRpro Ambassador in reply to membership]

I cannot believe some doctors who deny a well-kown adverse effect is due to a drug!!! I have a frieind who developed neuropathy and a strong tremor after some months of lef. Her rheumy agreed immediately. She stopped and later started on a half dose which wasn't quite enough. Then went to 15mg, Not sure what's happened since but she is still on it.

[tangocharlie]

40 mg is a hih dose. I was started on 10, tried to increase to 20 but diarrhea was too bad so dropped back down to 10. am now trying 10 in the morning and another 10 at night and that seems to be fine. As I've said in previous posts though, I don't think it's doing anything to reduce inflammation - unless things would be even worse without it. I've agreed with my rheumatologist to try it a bit longer at the higher dose

[Alebeau in reply to tangocharlie]

Thanks

I stand corrected, my dose is 20 MG and I take it all in the am.

Sorry about that mistake.

Maybe I will cut it in half and do what you do to see if side effects are less severe.

Good luck to you.

[tangocharlie in reply to Alebeau]

Worth a try as my rheumatologist told me when you take the Lef is not time-critical as unlike Pred it doesn't have a half-life. You can also get 10mg tablets so you don't have to cut a 20. She also said it doesn't matter if you miss the odd dose so when my guts were really unsettled I'd skip the odd day to let things calm down again

[Alebeau in reply to tangocharlie]

Good to know

Thanks a million.

[tangocharlie in reply to Alebeau]

You're very welcome, that's what this forum is all about, pooling knowledge and support. I've learned so much today from others

[Alebeau in reply to tangocharlie]

I totally agree

Thanks to this forum I was able to get my PMR under control by splitting the dose, gave me my life back. I have learned much more of course and today I learned from you about a better strategy to deal with Leflunomide.

👍

[tangocharlie in reply to Alebeau]

Let us know how you get on

[Alebeau in reply to tangocharlie]

I spoke to my family doctor today and was told my prostate is enlarged after all so I will not blame the latest trouble peeing on Leflunomide.

I will however ask for the 10 MG pills as you suggested so I can split the dose to see if that helps reduce the other side effects.

[Bennej30]

Hi, I am taking leflunomide, after not getting on with methotrexate. I started on 20mg which gave me awful diarrhoea so reduced to 10mg but found some aches and pains returned so am now on 15mg which seems to be ok. I guess it’s about finding the right dose that works best for you. Good luck.

[Sweetpants]

I am on Mtx, started on 15 mg, moved on to 20, and now currently on 22.5 mg once weekly. So far, so good with no noticeable side effects. Guess to find your ideal dose is the key...

[Zebedee44]

Thanks to your posting and previous response to my post seeking advice on leflunomide I am pleased that I decided not to take it at all. I’m tapering by DL method from 7.5mg to 7mg without leflunomide and I know this is a tricky point in the taper process but all that I had read on this forum about leflunomide made me reluctant to start it. I hope you manage to get things back on track Alebeau, sounds like you’ve really been through a difficult time.

[Alebeau in reply to Zebedee44]

Thank you andGood luck

[Coffeebeans]

I never got on with leflunomide at all. I couldn't get past 9 days because of the severe headaches and nausea. I tried twice as per Rheumatology nurse advice. My liver results started creeping up too.

I'm of the opinion that's it's just not worth battling on when there are some other options but only you can make that decision.

[Alebeau in reply to Coffeebeans]

So far my blood work has been fine for the liver markers and I fortunately I have only mild headaches sometimes. Saw a new Rheumatologist yesterday and was prescribed the 10 MG tablets that I will experiment by taking one in the morning and one at night to see if that settles the bowels.

Leflunomide seems to have helped me reduce the Prednisone to an all tome low for me and that is keeping me going with the hope that I will continue with the reduction successfully.

Thanks for sharing your experience.

[Coffeebeans in reply to Alebeau]

That sounds pretty positive and it's all a matter of weighing up the pros and cons isn't it.

Best of luck with splitting the dose. I hope it solves the problem.

[tangocharlie]

Did you try splitting the dose, when I did that I didn't get the diarrhea. The only reason to take it is if it reduces inflammation so that you can reduce the amount of steroids you need to take, and it looks like that might be the case for you if you're down to 8.5, or it might be just coincidence, no way of knowing. I gave it 7 months and it did nothing for me sadly, so I stopped it. Doesn't mean it won't work for others though. Am trying hydroxychloroquine now and need to give that at least 3 months. I'm still on 25-30mg Pred a day which works really well, I feel great and am able to move well generally, it varies from day to day, but of course there are the side effects of insomnia, moon face, high blood sugars etc. Ideally, I'd like to find a DMARD that works and lets me reduce the steoids but I've reached the stage where I'd rather take a high dose of steroids and be able to function than be stiff and in pain all the time or floored by fatigue, there is no point taking less than you need. As the yongsters say, I'm here for a good time not a long time! Another option for you is you might be able to reduce the dose and continue the experiment a bit longer - ask your dr.

[Alebeau in reply to tangocharlie]

I like your attitude for the pred dose. I also feel the same way, why live in pain when you don't have to. I am now splitting the leflunomide and it does make a difference.

I reduced to 8 and will be on the alert for the PMR aches- if they return I will definitely increase to a known good level for me.

Fortunately my rheumatologist is on the same page.

[tangocharlie in reply to Alebeau]

I'm really glad things seem to be going in the right direction for you.

[Alebeau in reply to tangocharlie]

Thank-you 🤞

[PMRpro Ambassador in reply to Alebeau]

"Fortunately my rheumatologist is on the same page."

Which is as it should be - and definitely makes them a keeper!