Anyone taking leflunomide (ARAVA) for PMR?

[lizg0017]

Hello all from the U.S. Has anyone taken leflunomide (ARAVA) as a Methotrexate substitute? I didn't do very well on Mtx. so my rheumy ordered leflunomide. The bottle is sitting on the counter as I am hesitant to start taking it. I have diagnosed PMR, suspicious GCA, currently on 7 1/2 mg Prednisone unable to go any lower without 'hitting the wall' in pain. ugh.

[jinasc]

Why are they insisting on a 'steroid sparing agent' is what I would be asking.

Pred controls it (does not cure it)..........we know all the side effects and all can be dealt with and no-one gets them all.

Count the known side effects of both Metho and Llfeu and think?

[lizg0017 in reply to jinasc]

Exactly! So, I'm taking a little more medication to ease pain, but I'd bet staying on just the Pred and stuff to help the pain has far less side effects than taking these 'steroid sparing' meds. While I was on Methotrexate, I still 'hit the wall' getting down to 5mg. So what's the difference? Doc's don't get it.

[jinasc in reply to lizg0017]

I would be upping the pred to where you were comfortable and then wait a month and start reducing at 0.5mg at a time using either DSNS or T&H.

You cannot rush PMR or GCA they both have minds of their own - come when they want, flare when they want and go when they want. We are after controlling the pain to where we can live a reasonable life as pain free as possible and in GCA saving our sight at any price.

[lizg0017 in reply to jinasc]

So true. Thanks. Will do. May up the pred just a little to ease the pain. I'm nowhere near I was at onset, but I know it's still quite active especially in the morning.

[PMRpro Ambassador in reply to lizg0017]

It's active in the morning because the antiinflammatory effect of pred isn't lasting 24 hours for you. It varies between 12 and 36 hours.

Does it help if you take the pred earlier in the morning? Or at night? Or split the dose? Depending on how long the pred works for any one of those options may make it better - and even help getting to a lower dose.

[lizg0017 in reply to PMRpro]

hmmm. When I was first diagnosed, I was splitting the dose because the higher dose was a bit much for me. I usually take my Pred anywhere between 8 - 10am. But I wake up much earlier than that, so yes, I should try taking it shortly after waking up. Hadn't thought of splitting my 7 1/2 mg though. But that's something I will try because it seems I feel the PMR pain mostly in the morning and then it starts again in late evening. so by taking a little bit in the evening may help endure a 24 hour day. Thank you!

[PMRpro Ambassador]

How long have you been on pred and how do you reduce?

If I were on 7.5mg pred and happy I would refuse to try any so-called steroid-sparer. It is a physiological dose, about the same amount of steroid as the body produces in the form of cortisol, and as the pred dose reduces, the cortisol level will be produced to top it up. The side effects associated with this dose are minimal.

I would consider it if I was stuck at a much higher dose - I was, I did and rejected it. Methotrexate was awful, I felt worse than with untreated PMR. Rheumy accepted that but didn't insist on trying anything else. A friend tried leflunomide and it was fantastic: she got off pred entirely and felt better than she had for years. Unfortunately within a few months she developed neuropathy due to the leflunomide, had to stop it and was back to 15mg pred within weeks. She is now trying a half dose of leflunomide to see if that works without making the neuropathy worse. That is a risk I have no desire to tempt - I feel good on pred and have no identifiable side effects, whatever dose I have needed.

[lizg0017 in reply to PMRpro]

Wow, ok. This is what I'm thinking. I've been on Pred since March of 2018. I reduce just a half mg. every month or two. Based on past relapses, I am in no hurry to reduce. Even going that slow, I still seem to 'hit the wall' at 5mg. I've never been able to get to 4mg.

Started taking Methotrexate July 2018. In March 2019, I developed a Superficial Thrombophlebitis on the top of my foot. It was very painful. I still see some remnant discoloration on my foot. In addition, I coughed constantly, my tongue turned yellow, I was blowing light colored blood from my nose, and most of the time, I felt like crap. All those MTX side effects are now gone since going off of it in March after getting the thrombophlebitis. So why would I want to risk taking another drug that has it's own side effects?

[PMRpro Ambassador in reply to lizg0017]

Quite

You are merely 15 months into a journey that typically lasts from 2 years to infinity (I have to be honest, even if doctors aren't!). The median time to 5mg is 18 months.

medpagetoday.org/rheumatolo...

I had a long discussion with an immunologist at a science meeting a couple of years ago - she told me they are concerned about the damage done to the immune system by the use at the same time of two immunosuppressant drugs and that they believe it increases the risk of developing some cancers in the future. Thanks but no thanks.

[jinasc in reply to PMRpro]

How true.

[lizg0017 in reply to PMRpro]

hmmm. definitely food for thought. I feel like I'm a terrible patient because my Rheumatologist keeps trying to prescribe different drugs, and I keep declining on taking them, yet I continue going back to her. oh well, she'll just have to put up. : )

Agree, taking two immunosuppressant drugs at same has to trip up the body in some way. My husband is a retired anesthesiologist and even he has trouble finding answers/solutions to help me. Thanks for the article. Already sent to my husband for his leisure reading.

[Hidden in reply to lizg0017]

I do take a dmard as I got stuck at 14-15mg and despite the fact I am at 6mg it has taken 2 more years. Whose to say I wouldn't have got here in 2 years without it? I don't seem to have side effects from it and Rheumy has left me to do a very slow taper based on how I feel as that as matched the numbers...so far. I am fearful of coming off it at this stage as I felt ok apart from fatiguey and add-ons. Rheumy left me at 6mg as he says most people he treats can't get below that easily so don't feel like bad patient. If I could have got to 7 or 8mg symptom free I would NOT have taken dmard and I think it was a bit quick to put me in it at 1yr in. But I did feel rubbish and felt better once I started reducing with it. Sorry for the rambling Reply. I suppose I think I wouldn't worry about being in single figures at the stage you are at.

[PMRpro Ambassador in reply to Hidden]

Who is your rheumy?

[Hidden in reply to PMRpro]

Kazmi

[lizg0017 in reply to PMRpro]

My rheumatologist is Dr. Menerey from the University of Michigan in Ann Arbor

[lizg0017 in reply to PMRpro]

My rheumatologist is Dr. Menerey from the University of Michigan in Ann Arbor

[lizg0017 in reply to Hidden]

Thanks. That's the million dollar question: 'Whose to say we wouldn't be where we are today with a steroid sparer drug, or without it?" As the overall consensus seems to be on this forum, even though we all have the same diagnosis, we all respond to treatment individually. Some almost the same treatment, some need a slightly different plan. Thank you all for your very much appreciated responses. Every little bit of experience and advice helps.

[Jackoh]

A bit late to the party! But I took lefludomide for about 18 months at 20 mg per day. At first I didn’t have any side effects except that I did seem to catch infections more easily. This would often mean that I had to raise my dose of pred again after taking an age to reduce. Consequently I didn’t really get very far with this medication. I was stuck around 19/18 mg of pred but as others have said I would have thought it unnecessary for them to put you on this at this stage as you are on such a low dose of pred. I would have thought to very slowly try to reduce is the best bet.

Incidentally I did come off the lefludomide as I was experiencing peripheral neuropathy in both legs. I have no evidence to prove that it was the lefludomide but because of the neuropathy I sought my Consultant Rheumatologist agreement for me to come off it. I would say that since then I do not think that coming off the lefludomide has had any detrimental effects regarding me reducing my level of pred.

[lizg0017 in reply to Jackoh]

Thank you for the insight. Agree, since I’m on such a low dose of Pred, I should just stay on my regimen to continue tapering very, very, slowly. Thought someone else mentioned neuropathy in legs. I feel the side effects of another drug has more consequences than the low dose Pred, long term. Best of luck to you.

[PMRpro Ambassador in reply to lizg0017]

My Scottish friend I told you about further up developed tremor and numb hands too with her neuropathy.