View Full Version : leflunomide (arava)

07-24-2010, 11:57 PM
Hi, I am a new poster. I was diagnosed in February of this year, and just this week have been taken off of 100 mg daily cytoxan. My rheumy is putting me on leflunomide to control my arthritis instead of methotrexate, which seems to be the standard. Has anybody taken either of these medications? And if so, what have your experiences been with them?

07-25-2010, 12:36 AM
I have no experience of it myself, but this (http://rheumatology.oxfordjournals.org/cgi/content/full/46/7/1047) study suggests that it is a valid alternative.

By the way - Welcome! :)

07-25-2010, 12:41 AM
Hi Nosman, nice to meet you. I don't know anything about Arava.

By "arthritis" I assume you mean the joint pain caused by Wegs? If so, it's not true arthritis. The pain is a sign of active Wegs.

Do you have a Wegs specialist at one of the major vasculitis centers?

07-25-2010, 12:43 AM
That's a great paper, Jack. We Weggies are so fortunate to have more and more drugs available these days. Never thought I'd hear myself say such a thing. Most of my profession would throw pots and pans at me for saying such a thing. Well, they don't know Wegs.

07-25-2010, 04:24 AM
I was first diagnosed with RA but it was Wegeners in disguise. Ditto to what Sangye said.

07-26-2010, 10:49 AM
Thanks for all the information and the warm welcomes. To Sangye, I have a specialist at the Columbia Presbyterian hospital in New York. And yes, I meant joint pain.

07-27-2010, 12:16 AM
Nosman, you need a Wegs specialist-- a rheumy who sees hundreds of Weggies.

07-27-2010, 01:49 AM
I think that is doubly important considering the unusual drug treatment you are receiving. I would have said that this treatment was still in the area of research rather than mainstream.
Don't underestimate the consequences should it all start to go wrong!

07-27-2010, 04:13 AM
I take mtx, which as you know, is also used for RA. My doc (at Hospital for Special Surgery) uses mtx, ctx, rituximab (rtx), immuran or cellcept only in treatment of WG, and I haven't seen others on here mention other immunosuppressants.

07-27-2010, 11:07 AM
My doctor does see many wegener's patients, although not exclusively those with wegener's. I talked to her about the medicine, and according to her, this medicine is more effective than methotrexate, even though it is newer, and it works in a very similar way to mtx.

07-27-2010, 11:37 AM
There are definintely been some papers about it, according to my cursory internet research, and it does appear that one study was halted because the relaspe rate was so much higher with mtx, than arava, that the mtx patients in the study were asked to switch. The adverse effects were higher with the drug however, and not at all with mtx. I'll ask my doc about it the next time I see him, and listen out for mentions of it in Long Beach later this week.

03-11-2011, 02:02 PM
Hubby's rheumy wants him to begin Leflunomide (Arava) next week. From what I can read, it is for Rheum. arthritis joint pain. I can't find anything in the information about suppressing the immune system. We asked for a change in meds, because it seems like the Cellcept he has been on for 2 1/2 years hasn't worked for past 8 months - has to have pred tapers and every time he gets down to 11 mg.pred has another joint flare and has to go back to higher pred to taper again. Am I wrong to think we really need a different immune suppressant? I really thought she would prescribe Retuximab. Maybe she was thinking of the good part of the past several years, when she almost took him off of all Cellcept, notrecently , where it doesn't seem to be working. Anyone have experience with this?

03-11-2011, 03:22 PM
What dose of cellcept is he on? They may need to increase it to the maximum dose of 3000 mg. Not unusual.

03-12-2011, 09:28 AM
He has been on 3000 mg. since last July (before that for several years only 500mg daily, doing so well). Experienced another flare last night with swift and severe shoulder pain so now back up to high dose of prednisone and then begins the slow taper once again. Now I am wondering if we should wait to switch meds. I still feel uneasy when Arava doesn't mention being an immune suppressant. But, I am only a librarian (LOL) not a physician specialist!

03-13-2011, 02:50 AM
Oh, 3000mg Cellcept is the highest dose so there is no option of increasing it. Have the other milder-immunosuppressants (ie mtx, imuran) been tried already? I don't understand why his doc would resort to leflunomide if they haven't. You're right to question that suggestion. You need to get all your questions answered thoroughly before proceeding.

03-16-2011, 01:10 PM
Hi Sangye,
They tried Imuran twice before Cellcept. Hubby spiked a high fever both times within about 5 hours and ended up in the hospital both times, so that is out. Mtx was prescribed and taken for about a month when he was first diagnosed, but nephrologist suggested nixing it because of kidney damage, so he took Cytoxin for about a year to get into remission. I was surprised about the Arava (luflunomide). With my "research" I thought they would try Rituxan. Actually I had never heard of Arava. He checked with rheumy again yesterday, and she told him to start it today. 12 hours later - no reaction, but we don't know if it will work for him, either. So grateful for your interest and suggestions!

03-16-2011, 03:14 PM
I was on Arava for 4 months last year. After being on Imuran for about a year and my results being ok but not fantastic my Rheumy told me about Arava and that he had recently been to a conference where he had spoken to others about Wegeners and they said they had had some success with Arava. So we thought we would give it a go. I felt pretty good while I was on it however I started to develop numbness in my toes (it can cause some nerve damage) and also you can not under any circumstances get pregnant on this medication. To start trying for a baby you have to be 2 year free of this medication or you can drink Questrian Lite (used years ago for high cholesterol) for 11 days (3 times a day) to clear it out of your system. I actually did this a couple of weeks ago and can report that it is gross to drink!!!!! My blood test result didn't like this medication either as everything started to slip - that is not to say that it wouldn't work for others, but this medication did not work for me.

I am now back on Imuran and have an appointment with my Rheumy on Monday so hoping that results are going ok, because I really want to start trying for to have a baby, anyway fingers crossed!!

03-17-2011, 02:38 AM
NanTom, I hope the arava works.

Sheena, I hope they can find something that works for you too.

03-18-2011, 03:07 PM
Thanks so much for sharing your Arava experience! You are the only one I heard from so must be it has not been prescribed for Wegies very often. Is the numbness in your toes improving? Hubby lost feeling in right foot before he was diagnosed. It is returning a little and that foot feels very different to him. Physical therapy helped with balance. Thanks to yur post, we should be alert to more changes in his feet. He started Arava 3 days ago. We also learned it is sometimes difficult for pharmacies to obtain and sometimes folks have to wait as it is back ordered.
Since you want to become pregnant, I am glad to hear you are off of it and the Imuran works for you! Hope the Questrian Lite worked! We will be anxious to hear any more news:)