Leflunomide update

[Alebeau]

Since stopping leflunomide in November I have now regressed back to being in PMR pain as my blood work confirmed yesterday. Both ESR and CRP are climbing fast (31 and 24.1)

I have been in pain and increased from 5.5 to 7 then to 8 mg Prednisone but now I will go to 10 to try and feel normal again.

While on leflunomide I was totally pain free and reducing pred successfully for a year. However the side effects were too much - constant diarrhea, dizziness and the worst numbness in feet and hands.

I will definitely just try reducing pred without any Steroid sparing agent from now on. I don't really care how long it takes, I am into my 5th year so far.

Just wanted to share my experience with my fellow PMR sufferers who may be pressured as I was to take either methotrexate or leflunomide.

[PMRpro Ambassador]

Hard luck - it really isn't uncommon. A lady in the Scottish group did very well with LEF but developed neuropathy. On stopping she was straight back to 20mg pred with the flare. However, she restarted the LEF at half the dose and was OK, in the end she was able to get up to 15mg very slowly and that was enough. Did you start the LEF with a really low dose or did you go straight to the therapeutic dose? A very slow start does seem to help.

[Alebeau in reply to PMRpro]

20 mg from the getgo

I'll reluctantly keep that in mind - seeing my rheumatologist on the 12th of January.

My neuropathy at least seems to be diminishing very slowly.

Thanks

[PMRpro Ambassador in reply to Alebeau]

Hmmmm ... Bulls, china shops, comes to mind.

[Zebedee44]

Thankyou for posting this update and I hope your neuropathy continues to improve. Everything you have reported about your experiences of leflunomide convince me that I am better off without it, although still at 6.5mg after 6 years and a long journey ahead. I’m expecting a bumpy ride through the adrenal reawakening but luckily I have not been put under any pressure by my doctor. I hope this year sees you back in control of your own health Alebeau

[Alebeau in reply to Zebedee44]

Thanks and best wishes to you as well.

You have confirmed my best approach from now on is slow and steady with prednisone reduction.

Good for you that no one put pressure on for a Steroid sparing drug which I totally have no faith in after this miserable experience.

👍

[cycli]

As you can see from my post have just started Lef. at 10mg daily. I have had numbness in feet and hands for over 2years and before I was diagnosed and taking pred. 18months ago. The loss of balance and unsteady feeling plus weakness I put down to pred.. induced myopathy. There are other factors involved and I don't believe all are attributable to sparers. How muscle responds and how the fluid is removed are significant factors

[Alebeau in reply to cycli]

I am still in much pain after stopping the Leflunomide in November 2022

I have increased the prednisone from 5.5 to 10 mg and still may have to go higher - just waiting for the next blood work in early February.

In hind sight I am sorry to have taken the Leflunomide as I think it has resulted in a huge setback (loss of 1 year) so I will have to start the slow reuction process all over again. In addition my shoulders are very painful - the left one was ultrasounded and am waiting for those results. The rheumatologist thinks it may be a ruptured tendon due to long term steroid use (now going on 5 years) - or did the Leflunomide do this????

The numbness continues in the feet and like you I had previous numbness in one for over a year before starting Leflunomide - it just got a lot worse with that drug.

Anyway, good luck to you. I know this is all negative but I am somewhat frustrated to have to step back in this annoying PMR battle.

[cycli in reply to Alebeau]

Not sure about ruptured tendon. More likely just strained. I think he is correct that it is down to pred. As the muscles doo less and waste they become more prone to damage as they can't sustain the work load they used to. We therefore overtax them unintentionally. Im nursing an achilles tendon sprain/tear. This limits the rotation of ankle and makes normal walking impossible. It takes weeks to repair. The less we can do the less we do and therefore it is inevitably a downward spiral. All the time we take more pred and so it continues. just have to hope it ends sometime.

[cycli]

It is not just pred. Here is my take on how this condition moulds us and progresses.

Confusing symptoms occur and they are similar to many conditions so diagnosis is often delayed, sometimes by years simply coping with increasing debilitating pains, stiffness or worse. We try to control pain through osteopaths, physios. acupuncture, alternative options and painkillers. Ultimately we discover PMR and GCA autoimmune conditions most have never heard of and for which prednisolone is the only relief. Some initial doses are eye wateringly high 80-100mg. some are too low like mine at 40mg. In nearly all cases it seems the consultants try to reduce too fast or the patients start off that way and flares occur. As realisation dawns that we are in for the long haul we need to take other drugs to regulate heart beat and blood pressure. Statins for liver damage are needed and diuretics for fluid retention plus others all adding to the mix and confusing our bodies. Our bodies are now no longer healing themselves automatically as they were but actually attacking themselves and we need the drugs to counter the effects. Balancing the states now is key. We have to work out what is happening at each stage and adjust dosing and type accordingly. If like me you had a condition like cellulitis when younger then it sits in your system for life and 50 years later because of damage or the weakened immune system decides to rear its head and further complicate the current condition.

The fluid retention in legs comes alongside muscle wastage from pred. The loss of balance is down to a slower response to nerve messages and the muscles not responding to the brains instructions. The lack of activity worsens the wastage and weakening and contributes to the fluid retention which cannot be cleared by the lymph system because of poorer blood flow from a weakened circulatory condition. This is caused by the pred. and less activity. Puffy legs and feet make for less flexibility and an unsteady feel which hampers proper walking and exercise, balance.

All in all it is interrelated and complex. No one person reacts in the same way as another and each needs to adjust to circumstances which suit their metabolism and physique. Not enough research is being done at the neuromuscular level of muscle response to pred. and I am convinced that by tuning exercise and dose to match an individuals response is key to improving our condition whilst suffering and post pred. state. There is clearly a genetic predisposition as to how we react to pred. and how it therefore debilitates us or otherwise. The later we start on pred. and the longer we take for remission plus the time we suffer whilst waiting for diagnosis the worse our state during the illness.

[Alebeau in reply to cycli]

I agree with your observations. I am in a transition stage with PMR and am waiting for Feb 4 bloodwork to determine the correct dose of prednisone.

Also the left shoulder pain is definitely not PMR as it just came out of the blue and the ultrasound did show "something " - I am anxiously awaiting the results.

I am a 74 year old male and until PMR hit me in October 2018 I was pain and drug free.

I was diagnosed immediately at the ER based on very elevated ESR and CRP.

As you said, the doctors did not handle the prednisone levels well and so I see sawed many many times so far.

The Leflunomide I think has set me back at least one year in the recovery process.

C'est la vie . . .