Rheumatoid Arthritis and Arava update

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arava (leflunomide)I haven’t been posting much because so much has been happening. I’ve even written posts, and not published them.  Just forgot.  Must catch up on those…

Anyway. Where am I now?

Arava (leflunomide) is not my friend.  My rheumy rang on Friday to tell me my liver function was not good and I need reduce my dose of Arava back to 10mg.

Now, I don’t feel that 20mg is helping much.  I really doubt that 10mg is going to help much!

So I’m wondering, why bother?

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I’m still experiencing some very unpleasant side effects from Arava…diarrhea, nausea, dizziness, fatigue, weakness, mouth ulcers, hair loss…have I forgotten anything?

It’s not a nice drug.  But it has to be tried.  Rheumy tells me I need to be on it for 6 months before I ‘fail’ it.

My question is why?  Now that it’s affecting my liver, after being on it for almost 4 months, I think it’s a safe bet to say this drug is not for me.  I think it’s safe to say that I have ‘failed’ Arava.

So while I agreed while rheumy was on the phone, I thought about it over the weekend and came to the conclusion that Arava is not for me.  So I called her back.  The gatekeepers put my message through.

Two days later, hearing nothing, I called again.  The gatekeepers promised that she would get to me.

The next day I suffered a full body mega flare that completely broke me. Physically, mentally and emotionally.

I called rheumy in tears and the gatekeepers made an emergency appointment for me.  On Monday. (Ok, so you need tears to understand that it’s really bad?  Why is it that me *saying* that it’s really bad doesn’t have the same effect? )

Five days away.

Better than nothing.  So when I see rheumy I am going to ask her why she can’t just go ahead and fail me.  And ask her point blank if she intends to try and get me on a biological.

She has said she will try to get them for me.  I have been patient.  Admittedly I have been undertreated for five years by a different rheumy and this is not my new rheumy’s fault.

I have been in daily pain for five years.  My window of opportunity closed many years ago.  They aren’t even trying for remission anymore.  Low disease activity is the best I can hope for.

Or take my chances with prednisone. Which hasn’t been my friend either lately.  But that’s another post…

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7 COMMENTS

  1. Arava did not help me I kept getting infection after infection on it. But my white cell count was normal, so I am now going to start the biologically. My Dr told me that if my White cell count was decreased by arava, than I would not be able to have the biologicals, as that is an indication that your body will not tolerate them. Even starting the biologicals- next week- no date yet! I will still be taking Arava, Prednisone, Methotrexate and everything else, they only start to wean you off those once you have reach a good outcome with the bios. Keep with it, we all know how much it sucks, and like you often feel like its not worth waking up again for another day. Even knowing that I start the program next week, today I have been unable to get up, maybe tomorrow, may be sat. Just remember we are all with you. I will up date you on when I start and how I go, to share with others, so everyone knows that we can do this.

  2. I have been taking Enbrel injections for about 1 1/2 yrs without any problems until recently. It isn’t with the drug itself, because it has been great. Instead it is with the cost. When I first started taking it, I didn’t have insurance so through their cost free program I was able to receive it. Now I have insurance and a supplement (that they strongly suggested I get) I can no longer receive it. I fall into a crack. I am awaiting a grant approval to continue receiving it and if the grant doesn’t go through then that’s it for me. It just really doesn’t make any sense. If something helps you should be able to receive assistance to continue it, but instead it’s “sorry you don’t qualify”. I have insurance, but will not be able to pay the co pay. Which those that suffer with rheumatoid disease know what that means…back to merely existing. Because I don’t qualify, I don’t deserve to live any sort of quality of life…

    • That’s truly horrible, Claudia. Treatments should be available to those that need them…not just the wealthy. I hope you get the grant…how long until you know? I understand exactly what you mean about merely existing.

      Arthritic chick signature

      • Cluadia, are you on methotrexate or any chemotherapy, I have a long relationship with chemo drugs first with cancer then with my RA. It is essential you stay out of the sun as much as possible on chemos, it reacts with your immune system causing allergic like reactions with other drugs and some foods. I hope you really do well on the new treatment, but even if the first isn’t right for you there are others. I think Arthriticchick said you can try more than one. Good luck

  3. I hope this will make you feel some what better…..I have been on everything for the past 4 years…all of the above mentioned, there is a protocol that must be followed because of insurance issues…sucks, doesn’t it! I had my first round of infusion of the biologic Retuximab or Retuxen….I had a few allergic reactions , so they had to stop after 4 hours and lots of Benadryl …..it was a good thing. 2 weeks later, just yesterday, I did it again….no issues at all. The theory is, the first time my body rejected the drug, I had been out in the sun and had a very bad reaction to it, so my immune system was going crazy. The drug stayed in my system and allowed this next dose to go in with no issues. I am scheduled again in 2 weeks for another treatment. Now I just pray that it works at all. Still taking 10 of leflonumide and plaquinal. I am lucky that all of my blood work thus far has been normal. Hang in there…time, time time, it’s what we all need to wait for the drugs to work! It’s a tuff wait!

    • Elaine, it really is a tough wait. But thanks for your post – it does remind me that plenty of people are doing it tougher than me. Good luck with the Retuxen…I really hope it works for you.

      Arthritic chick signature

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