Arava/Leflunomide has an ANTIDOTE?!?

BerserkeRA Community Member June 17, 2011
  • Yes, it does.  The reason arava needs an antidote is that it can cause complete liver failure (e.g. it can be fatal) and if you just stop taking it without doing the antidote, arava can stay in your system for up to 2 years!  It has a strict set of rules (arava) related to how bad your LFT's get (I've forgotten which test is the ticker) -- if you are 2x the "high", you drop to 10mg per day, 3x the "high" you d/c the drug and start the antidote.

     

    That's kind of sobering, isn't it?  It also brings to mind the rediculous choices we are asked to accept as reasonable in the course of treating this disease.

     

    As some of you may have read I developed a toxicity to arava last Friday (which is to say that my Rheumy got the results of my latest blood test that day and called me to ring the alarm bells).  What toxicity means in this case is that my LFT's were going from "need watching" to "alarmingly bad" over the course of a month.

     

    I took arava for about 3 months.  I started with very close to normal LFT's and because my liver has a history of being cantankerous with anti-metabolites, when given the chosen to follow a loading dose routine or skipping it and waiting for my blood levels to come into the therapeutic range over time, I chose the later.  So, for the first 1.5-2 months, I didn't really notice much improvement.  However, over the last 1-1.5 months it was magic time again!  I had very high hopes, despite the rising LFT's in my second blood test after starting the drug (but still not 2x the high -- I skipped that stage completely in the course of one month).

     

    After that second blood test, and in an effort to help out as much as possible, I started a rigorous meal plan - 1800 calories, which often ran under, and doing as much exercise as I could handle (which thanks to feeling better, was a lot more than I expected).  Unfortunately, none of that really did much, and for the last 2 weeks of taking the medication, I was nauseous every day.  Come to find out, persistent nausea is one of those things that you should call your rheumy about immediately when taking arava.  Who knew?

     

    Anyway, back in the hall of antidote, our hero now gets to take a couse of cholestyramine, which is delivered as a powder for some reason.  2 packets, 3 times per day for 10 days.  Doesn't sound too bad right?

     

    WRONG.

     

    It is "orange flavored," but whoever decided that has obviously never tasted an orange, and quite possibly has never eaten food fit for human consumption.  The instructions state to mix with water or your favorite beverage (but I don't think scotch would be good for me), or to mix it in applesauce.

     

    The first 2 doses I mixed with 16 oz. of water -- big mistake, as you need to make sure to get all the powder in you, so you add more water and drink again...  I ended up chugging 32 oz. of water with each of those 2 doses and was miserable. 

     

    The next day I was still feeling nauseous (which is a side effect of the cholestyramine), so I decided to mix it with applesauce.  Um.  Don't do that.  It creates putrified-apple flavored cement.  NOT RECOMMENDED :)

  •  

    I finally found a way to minimize the overall yechiness (though am still nauseous even a week later) which is to mix it in 4 oz. of water and use a mixer with a milk shake attachment.  Now, this does make the concoction LOOK like orange juice (though it still tasted like sand).  However, with only 4 oz. you can chug about half the dose without feeling like gagging.

     

    I could feel it the effects of it immediately wicking away the arava.  I know that sounds crazy, but its true -- of course I couldn't feel the drug being sapped out, but I could feel the blood levels dropping in my RA symptoms Cry.  After 7 days of the antidote, its almost as if I never took arava at all.

     

     I've only got 10 more doses -- yes, I'm counting, and if you are ever cursed with having to take this foul stuff, you will be counting too!  I am able to eat a meal here or there, and yesterday I didn't need a nausea pill until 3 pm!  That was a big leap forward.

     

    As an interesting side note, cholestyramine is used to manage high cholestyral (as the name gives away) and mixed with aquafer to treat diaper rash!! Foot in mouth

     

    It's not all gloom and doom -- I'm not going to die, and my liver will probably recover (ever notice a doctor will never say yes or no?  'Probably' most of the time means 'yes' and 'might' most of the time means 'not a chance in hell' in my experience ;]).  I don't know what will happen next -- I don't see the doctor again for a few more weeks, but there are no more anti-metabolites to try...

     

    He did mention talking to a guru of methotrexate to see if there is a way I can take that again without taking 20 years off my life (another of those wonderful choices -- take MTX and trade 20 years for quality of life for the time left).  We did talk about trying kineret...  Time will tell I guess.

17 Comments
  • Lene  Andersen
    Health Guide
    Jun. 17, 2011

    a quick note to users: we having technical issues - a bug seems to have eaten the feature that indicates when the post is more than one page. To read the full post, click the "print" link just about the title of the post.

     

    On the positive side, I guess you'll never suffer diaper rash? That does sound like a particularly nasty drug. Why can't they do it...

    RHMLucky777

    Read More

    a quick note to users: we having technical issues - a bug seems to have eaten the feature that indicates when the post is more than one page. To read the full post, click the "print" link just about the title of the post.

     

    On the positive side, I guess you'll never suffer diaper rash? That does sound like a particularly nasty drug. Why can't they do it in pill form? If you're already miserable with the nausea, why add to it? Your Viking heritage shows true to form and giving you the strength to take this... Well, I was going to say poison, but clearly anti-poison. I'm glad it's there so you can get rid of the toxicity, but on the other hand... So sorry that you can't find a drug that will kick your RA's in butt.

     

    thank you so much for writing this post. I'm putting it in my reference file - down the line, someone will need this information.

    • BerserkeRA
      Jun. 17, 2011

      Thanks Lene.  This too shall pass... in 9 MORE DOSES :)

    • Lene  Andersen
      Health Guide
      Jun. 17, 2011

      not that you're counting or anything... Wink

    • BerserkeRA
      Jun. 17, 2011

      SEVEN DOSES :)

    • Lene  Andersen
      Health Guide
      Jun. 18, 2011

      woo! You'll be done on Tuesday!

    • BerserkeRA
      Jun. 18, 2011

      Monday am is my last dose.  Gotta do them 3x per day (yech).

       

       

      Oh, btw,  FIVEfiveFIVE5fiveFIVE doses left!

    • Lene  Andersen
      Health Guide
      Jun. 18, 2011

      but with x3/day, it's even faster. Wheee!

       

      And then have something really yuumy and strong-tasting to kick the taste forever out of your mouth. Like really good Danish licorice.

  • Kate
    Feb. 20, 2012
    I started taking Arava 6 months ago. I started on 20mg/day and after 3 months noted some very strange neurological side effects that were not noted in any of the information. My rheumatologist felt I was having toxicity issues and lowered the dose to 10mg/day. The symptoms I felt an intense burning in my tongue, continual abdominal contractions, numbness and...
    RHMLucky777
    Read More
    I started taking Arava 6 months ago. I started on 20mg/day and after 3 months noted some very strange neurological side effects that were not noted in any of the information. My rheumatologist felt I was having toxicity issues and lowered the dose to 10mg/day. The symptoms I felt an intense burning in my tongue, continual abdominal contractions, numbness and tingling in my arms and legs and strange as it may sound, it felt like someone was injecting freon gas under the skin of my stomach and my back, cold to the core. I tried to stick it out because I did feel like the Arava was helping my RA and NOTHING ELSE HAS, but I could not handle the neuro side effects. I started taking the cholesteyramine 1 packet 4x/day for 4 days. My tongue no longer burns, the cold sensation and 80% of the abdominal contractions have subsided but I don't feel that it has completely cleared yet. I am thankful that my rheumatologist believed me and dind't think I was " whacked out"! At this stage of the game, we RA'ers know our bodies and the side effects that we feel. Has anyone else experienced any side effects of this nature?
  • Ish
    Ish
    Jun. 24, 2011

    Yikes! That is my comment. Really. That's all my brain would say while I was reading your post. Yikes!!!!!  Surprised

     

    You're absolutely right when you talk about the rediculous choices we have to make.... I remember seeing a commercial for Enbrel years ago, and wondering who in the world would be crazy enough to take a drug like that.... um, well... that...

    RHMLucky777

    Read More

    Yikes! That is my comment. Really. That's all my brain would say while I was reading your post. Yikes!!!!!  Surprised

     

    You're absolutely right when you talk about the rediculous choices we have to make.... I remember seeing a commercial for Enbrel years ago, and wondering who in the world would be crazy enough to take a drug like that.... um, well... that would be me.

     

    Feel better soooooon!!

     

    Ish 

  • suzzy
    Jun. 17, 2011

    thank you for the post i well surely talk to my rhuemy about this its almost a month when i started this arava an well have blood work before i see him

    • BerserkeRA
      Jun. 17, 2011

      You are welcome Suzzy -- I hope your experience goes better than mine.

       

      Just keep a close eye on how you are feeling and report everything to your physcian :)

  • V
    V
    Health Guide
    Jun. 17, 2011

    Holy Moly!!! That is all I can think of to say.  Thank you for this most informative post.  I sure it will help a lot of people. I'm sorry you are going through this, but you have the right attitude.  We have to do what we have to do.  I certainly hope your doc can find something that works for you.  I can't take Plaquenil, and now...

    RHMLucky777

    Read More

    Holy Moly!!! That is all I can think of to say.  Thank you for this most informative post.  I sure it will help a lot of people. I'm sorry you are going through this, but you have the right attitude.  We have to do what we have to do.  I certainly hope your doc can find something that works for you.  I can't take Plaquenil, and now apparently can't take MTX.  What is next, oh wise one?

     

    V

    • BerserkeRA
      Jun. 17, 2011

      Well for me, when plaquenil didn't work, I tried MTX which worked great except for the part about trying to make my liver change zip codes.  Then I went on a really low dose of MTX and tried a few biologics, increased the MTX again, reduced the MTX... and then arava :)

    • V
      V
      Health Guide
      Jun. 17, 2011

      What biologic are you taking, Berserka?  Do biologics mess with a person's liver or kidneys, or mostly just increase you chance of infections?

    • BerserkeRA
      Jun. 17, 2011

      I'm taking orencia right now.  I think the risks with biologics are allergic reaction / serious infection / cancer. 

       

      I don't know for sure, but I haven't had any liver reactions from any of the biologics I take.  I specifically asked about kidney issues with orencia and was told it wouldn't affect my kidneys, but might have a minor impact...

      RHMLucky777

      Read More

      I'm taking orencia right now.  I think the risks with biologics are allergic reaction / serious infection / cancer. 

       

      I don't know for sure, but I haven't had any liver reactions from any of the biologics I take.  I specifically asked about kidney issues with orencia and was told it wouldn't affect my kidneys, but might have a minor impact on my LFTs (although it doesn't).

  • Anonymous
    RA Guy
    Jun. 17, 2011

    I'm sorry to hear this news. I too developed liver toxicity about a year ago as a result of taking Arava, but i don't think my case was as severe as yours...we lowered the dosage, and within a couple of months my liver enzymes were back to normal. Best wishes!

    • BerserkeRA
      Jun. 17, 2011

      Thanks RA Guy.  I was really hoping I could tolerate the arava -- I respond soooo well to anti-metabolites.  Well, my RAMonster heard that hope, ya see... and he did what he does.