Onwards to Arava (leflunomide) to treat my Rheumatoid Arthritis

by admin on November 15, 2012 · 22 comments

I went to my new rheumatologist yesterday.   And I survived!

I always get very stressed before seeing a new doctor.  Starting from the beginning, explaining everything, terrified I’ll forget something important, or say something wrong that gives the wrong impression…once a doc has formed an opinion, it’s very hard to shift.

And many, many docs come with the pre-existing opinion that unless your CRP is through the roof, its minor pain that can be cured with an anti-depressant.

My new rheumy is not like that at all.  She looked at my blood work.  She felt my joints.   She looked at my scans.

She said it was quite obvious that I have severe and active Rheumatoid Arthritis.  She seemed quite surprised that anyone could possibly come to any other conclusion…the scans say it all, even if the blood work doesn’t.

She listened to my stories, and I could tell she believed me.  She understood that I am the kind of person that hides my pain, and that I am far too proud to use my walking stick at places where I might run into people I know.  She understood when I explained to her that I was an exercise junkie before I got sick, and I have always worked out my problems in the gym.  So that’s what I still try to do now.  It does NOT mean I am not in pain, or that my rheumatoid arthritis is mild.

She understood that when you live with pain every day, you will endure a little more to be able to do the things that you love…the things that bring you some happiness.

It was quite cathartic to talk it through.  And to have someone listen.  And to have someone care.

So when she prescribed Arava (leflunomide) I agreed to take it.  She explained it was no more likely than any biological to cause the intense emotional side effects that methotrexate caused.  She also explained that there is a washout procedure that can remove the drug from your body quickly, if side effects are severe.

She told me if I take Arava for six months, and it doesn’t help, then she’ll have no problem putting me on a TNF blocker.  But Arava needs to be tried first.

She was so reasonable, so logical, and yet still very empathic, that I agreed, where I have refused to take that drug before.

She allayed my fears, and I trust that she will be there if things go badly.  Its amazing what an empathic approach can achieve.

So I filled the prescription and took my first dose last night.

And now?  Now we wait…

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{ 22 comments… read them below or add one }

C November 15, 2012 at 12:25 pm

You are awesome. I’m glad you found a doc who listened and cared. I hope this med works for you.

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admin November 15, 2012 at 6:40 pm

Thanks C. You’re pretty awesome yourself. Wishing better days to us all!

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Michelle November 15, 2012 at 9:20 pm

I am so glad that you have finally got a rheumy that listened and believed you. Good luck with the Arava.

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admin November 16, 2012 at 8:46 am

Thankyou Michelle. An empathic, understanding rheumy makes the world of difference. Feeling very hopeful and positive now.

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Gillian Pidler November 15, 2012 at 10:06 pm

“She understood that when you live with pain every day, you will endure a little more to be able to do the things that you love…the things that bring you some happiness.” Quote of the year! If only everyone could see that.
I am wishing you lots of luck on the Arava, I hope this is the one for you. Your rheumy sounds lovely, very understanding.

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admin November 16, 2012 at 8:47 am

Thankyou Gillian – she is wonderful. I think I love her…LOL.

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Sarah November 18, 2012 at 12:18 pm

Good luck- I have been on Arava for 11 weeks- i had to take it for 12 weeks to get on the TFN- I have been very ill on it, hospitalsed twice for infections from the low immunity as still on methotraxatae. BUT my appoint is on the 22/11 so staying on it if it KILLS me. Make sure you do everything you can to not get any bugs whilst on it. Cheers Sarah

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admin November 18, 2012 at 11:05 pm

Thanks Sarah! And please take care of yourself. I have no problems with Arava so far…but its only been a few days. I will be careful to avoid bugs and such. Sounds like it has been a very rough road for you…stay well. Only four more days!!! You’re very strong. Good luck at your appointment…I hope you get on a TNF blocker that works for you…let us know how you go!

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Sarah November 22, 2012 at 7:15 pm

Can you beleive after waiting all this time I am now to sick to start the TFNs, i have to wait another 3 months before they can start me. So taking the arava has delayed my starting treatment-AHHH-feels like screaming.!!!

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admin November 23, 2012 at 8:22 am

3 months??? Oh that must feel like an eternity – I am so sorry Sarah. Its really not fair! Take care of yourself, I hope you get over the infections soon, and your general health improves quickly. Not to mention that pain! Thinking of you :(

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Annette November 18, 2012 at 2:12 pm

I took Arava before I was put on the biologic. It was a prerequisite. I gave it a really good try and failed on it. But no infections so that was good – it was just gastro effects that I had. Then I started with the Humira and it worked well.

I swear I was on every dmard in existence previously but I don’t think any of them were recent enough for the insurance company.

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admin November 18, 2012 at 10:58 pm

Seems it’s always down to the insurance company (or rather, the money!) rather than what the patient needs, isn’t it Annette? So frustrating! I’m glad Humira is working for you. Just curious, did you fail Arava because it didn’t help, or were the side effects intolerable?

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Annette November 26, 2012 at 3:53 pm

I failed on the side effects. They were not dramatic but persisted. I felt queasy most of the time and had gastro troubles. I lost weight. Kept trying for maybe 8 weeks (a bit of a guess) and then called the dr. I think the drs are not surprised to hear that result. On the plus side I have friends taking it and it is helping them. It depends on your constitution.

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admin November 28, 2012 at 6:45 am

Sounds familiar, Annette. I am experiencing the gastro troubles, dizziness and constant nausea. Also a strange ‘weakness’…I don’t know how else to describe it. Like my muscles have no strength? But its only two weeks in. Nothing is so terrible I can’t persevere. And hopefully the side effects will resolve. I feel like my joint pain has improved…maybe I’m just an optimist??? But its enough to make me want to keep with it. I hope Humira keeps working for you!

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Elizabeth glass January 21, 2013 at 3:35 am

Are you from the US? I don’t understand why your docs are withholding the Embrel from you. My disease is mild and my doc gave it to me when I asked. I would bet you would get your life back. The drug is that good.

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admin January 21, 2013 at 8:01 am

In Australia the rules around getting biologicals are really strict, because of the expense of the drugs. If I fail Arava, I should qualify. So another three months of Arava, and we will see. Its very cheering to hear how well Enbrel worked for you, thankyou Elizabeth :)

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Ruth February 11, 2013 at 9:12 pm

Can I ask what dosage of arava you are taking? I said in a previous post that my rheumy wants me to add 10mg of arava daily to my current drug regime (I’m scared of the side affects) I take 25mg MTX weekly, 15mg mobic daily and im currently also taking 10 mg daily as I can’t get this most recent flare to settle. I have been through sulphsalazine and plaquenil as well (both did nothing) MTX was a miracle for me for 2 years but now appears to have lost its effect on me. I would like to try the biologics but my rheumy has not even mentioned them. Would I need to try the arava first? I also live in Canberra and have seronegative ra I wonder if we see the same rheumy?

And just to have a vent I was parking today in a disabled spot ( I have a permit) as last two flares have affected my feet so badly that walking is just a joke. A lady asked me in a rude voice ‘are you disabled’ I wanted to run over and slap her but sadly said feet don’t allow running at the moment. So mad!!

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admin February 13, 2013 at 1:59 pm

Ruth, I hear you! Its amazing how rude people are capable of being…I get mad when I see people without tags parking in disabled spots, but if there are tags on the car, people should respect that!!!

I’m currently seeing Dr Wong, and I love her. Who is your rheumy? I’ve also been through plaquenil, sulfa, mtx and now Arava. I’m on 20mg now. I have been on 20mg for 7 weeks and Arava for 13 weeks total…no improvement, I feel. Biologics are next for me, if I can qualify. But yes, you’ll have to go through the Arava. My rheumy said six months on Arava, then maybe she can get me biologics. Feels like a very long time to wait right now! I hope Arava works for you…or that you can move onto biologics soon.

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Ruth February 11, 2013 at 9:13 pm

Whoops I meant to say also currently taking 10mg prednisolone daily, I left out the prednisolone bit

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admin February 13, 2013 at 2:00 pm

Ahhh prednisolone…I’m down to 15mg now. How long have you been on the pred?

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Ruth February 13, 2013 at 8:36 pm

I have been back on the pred for 2 weeks. I stopped plaquenil and funnily enough flared almost overnight even though both my rheumy (dr doray raij) and I felt it wasn’t doing anything. So the next step was to add arava to my MTX. I’m not keen to try arava just yet, and I tolerate MTX well except for having dramatically thinned hair and total loss of eyebrows so I am going to give MTX injections a go before I try the arava. I’m hoping to taper the pred once I start the MTX injections. I have a love hate relationship with pred. Love the relief, hate side effects which for me include full body hot flushes (extreme sweating), infections that won’t clear, including thrush, mouth ulcers (big huge ones), and the weight gain that I just can’t shift!! One small bonus is that my usually stuffy sinuses are great on pred. Your blog is so great and I have felt better just reading your posts thank you. Do you attend any support groups or mtgs in Canberra? I don’t know of any but always wondered if there was some.

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admin February 28, 2013 at 2:33 pm

Hi Ruth, I have a friend who sees Dr Dorai Raj. I hear she’s very good :) Funny how we can think a drug isn’t doing anything, until we stop it! How much pred are you on? Sorry for the slow response, I have fallen in a big heap myself lately, as I taper off prednisone. Arava is not going so well for me, and mouth ulcers, night sweats and hair loss all sound very familiar! I don’t know of any support groups. Have you liked the facebook page? There are also some good groups on facebook that I can point you towards. Good luck, and let me know how you’re going.

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