Anti-metabolites and me

By BerserkeRA Friday, June 10, 2011

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So... What do you do when the only meds* you respond to are anti-metabolites and you are toxic to both methotrexate and leflunomide?

*I haven't tried all the biologics yet, but have failed off 2 of the TNFs, and Orencia was only marginally beneficial -- maybe a 5-10% reduction.

I'm feeling pretty low today. I have to start taking the leflunoimide antidote today and have been told to stop taking the drug. It is so hard to comply with this order... Since I had to stop taking methotrexate, leflunomide is really the only thing that gave me a semblance of normality -- ok, I had no endurance to speak off anymore, but I could do things again... I really don't want to go back to the studying the Slug Form of living.

How to deal with flares!!

Comments (7) | Add comment

V, Health Guide

6/11/11 6:29pm

I can hear your frustration and I am so sorry you are on a rough road right now. First, may I ask, do you feel comfrotable emough with your rheumatologist to have a long talk about your alternatives? Did the Arava and MTX make your liver enzymes spike? Have you ever tried Plaquenil in combination with any other meds? I cannot imagine going through all those meds w/little to no relief. I know it is hard, but try to get some rest, and rethink your situation and be ready for your next rheumy appointment. Or, perhaps it is time for a second opinion...??? Do you take prednisone, and does that help?

Blessings,

BerserkeRA

6/11/11 7:21pm

Thanks V. I am a non-responder to plaquinal, unfortunately. The original plan was to see what happened on the leflunomide with the orencia -- and it was going very well, so at the last appt. we stayed the course. Orencia doesn't work well enough on it's own. I think the plan is to try kineret next, but I'm not sure what will come next now. I tell ya, the antidote to the leflunomide is pretty nasty... Avoid it if you cam.

V, Health Guide

6/11/11 8:24pm

I will keep that in mind! Actually, I didn't know there was such a thing. I am new to all this, but learning fast. Hope you can get some relief soon!

Martilla

6/11/11 11:43pm

I hope you find something that helps soon, I am having some semi normal days and don't really feel like going back to the slug gish form of me again anytime soon.

Prayers your way!

Martilla

Lene Andersen, Health Guide

6/14/11 9:25pm

Aw, crap. I was so glad to see your name on a SharePost again and then I read it and just want to give you a hug. In a tough, Scandinavian way, of course.

have you tried Rituxan yet? That seems to be sort of the drug to try when nothing else works and I know Brad responded well to it, so you may want to shoot him a message if you want more information. As well, Lisa Emrich has written a post about Rituxan and another about her second infusion.

Unfortunately, when you're not responding to medication, the only thing to do is to keep trying one after the other. Is it possible to try two Biologics to see they would do better than just one? I know combination therapy will use one of the standard DMARDs and a biologic, but I don't know much about two Biologics together, but maybe? The good news, such as it is, is that there are several new Biologics coming down the pipeline, so there will be options for you. I'm just so sorry that you have to be in hell while you try finding a drug that will work.

I had no idea there was an antidote to Arava. When you're up to it, would you be willing to do a SharePost with some more details about that?

BerserkeRA

6/17/11 11:04am

Thanks Lene!

Yep, I did the antidote sharepost this morning -- here it is :)

Lene Andersen, Health Guide

6/17/11 11:13am

Thanks so much! Glad you did it before I go on vacation for two weeks so I can read it now. I've been bursting with curiousity.

Anti-metabolites and me

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