Dr wants me on Leflunomide (Arava) need advice | Arthritis Information

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Good evening!  Amy here.  I'm a newbie here.  I was dx in march of this year and am still flaring pretty badly.  I tested high with the anti-ccp test and am very symptomatic with pain and stiffness in many joints.  Thankfully, this was caught early and I have very little erosion at this point.  So my Dr.s are trying pretty aggressively to get me under control.
 
I Saw my Rheumatologist today.  She said the treatment plan of 20mg MTX/ 5mg pred/ 400 mg plaquenil isn't cutting it, so she wants me to try Leflunomide (also called ARAVA, I guess).  Can those of you who have tried this drug give me your opinion and experiences/side effects with this drug.  (I realize every individual is different, I just want to see what others have been through with it.)
 
Thanks,
Amy
 

Hi Amy and welcome!  I'm sorry the original treatment isn't helping.  I didn't respond to mtx either.  My rheumy had me try Arava (yes, it's the same drug) and unfortunately I didn't do well on it.  Not only did I not see improvement, but I had terrible (and strange) side effects.  Things like heavily increased menstrual periods, vivid nightmares, and lots of nausea.  I know each person responds differently, but I do remember a few others on here having trouble with it, so hopefully they'll chime in with their experiences.

If you decide that Arava isn't for you, perhaps you could ask your dr whether Imuran would be an alternative, which is another similar drug.  I've been on it for quite some time with no real side effects, although only a slight improvement to show for it.

Good luck with your decision and I hope whatever you choose really helps this time.I have been on leflunomide for about  6 months now and have not had any noticeable side effects.  Not sure how well it's working though.  I take Humira which seems to provide most of my benefit.  The leflumonide adds some benefit, I think, but not a dramatic improvement.  I say this because typically the RA symptoms return a few days before each Humira shot while I take the leflumonide every day.
 
Alan
I have been taking arava for about 8 years with no side effects.
When my Rd changed me to humira last fall and it was not working so well
he also put me on Mtx. I did that for 1 month with awful side effects.
So I told the doc I wanted back on Arava and have sense then
dumped the Humira and am back on Enbrel and am doing much better,
not great but better.
 
I have been on arava for over 6 months now and haven't had a side effect as of yet.  it can cause some stomach discomfort, but i take prilosec and zantac for that and nothing else goes wrong.
 
So far, it is the only drug i have tried that hasn't had a side effect hit me.
If you start running to the little house all the time, don't sit and wonder what is causing it.
Usual for me was about six times a day but did peek at 10.

Things were that bad that I almost needed a nappy full time.

Once I was out taking photographs and had 60 sec warning and in sand dunes.
No need to say what happened next.
I was a sorry sight as I walked (bowed legged) back to the vehicle trying to avoid all human contact.

Trouble was the two bloody dogs that got a whiff of something.
They were like two male dogs at a bitch on heat.

I can laugh at it now, but sure as hell not then. Arava works better for mr than mtx.  Arava raised my liver enzymes, however.  Both mtx and arava have made my hair fall out.   I too would like to hear from any one/every one that has tried Arava.  I'm semi new to this, with a diagnosis a little over a year ago, but my mom was dx'd almost 20 years ago.  But she hasn't been on Arava.  The last time I went to the RD (about 3 weeks ago) I was prescribed Arava and filled it, but after some internet searches, haven't actually taken it.  I'm on Enbrel and lodine (mtx at low dose kicked my butt once every week and I only stuck with it for 2 months).  The Enbrel/lodine (for almost 1 year) don't seem to be cutting it, as my hands are visibly getting worse (plus other ouchy but same looking joints) and the fatigue is back like a demon.  What really concerned me was the 'stay in your body for up to 2 years' thing.  Oh, and that only about 40% of people have positive results with Arava.  What I really want to know is, if it's so hard to clear from your body, do any possible side effects linger on and on after you go off of it?  And how many people have had tolerable side effects combined with significant improvements?  I haven't tried plaquenil yet, have many of you had good results with it?  My current RD poo poo'd AP and I'm not ready to change RD because I like her in so many other ways.  All of this is soooo darn confusing, but I guess I'm glad there are more options today than 20 years ago when my mom was dx'd!I am new here too and I am on Humira, Arava and Mobic. The Arava and Mobic I just started last week due to a couple of days before I am due to take the Humira I start hurting and running a low grade fever. I am not due for the Humira until next Monday so I don't know if it is going to help yet but I am not feeling so fatigue which could be from the Mobic because I have been sleeping alot better. I have try MTX too but it made me very sick to my stomach. So far no side effects from the Mobic or Arava. hi amyid i took arava about 9 yrs ago for about 1-2 yrs along whith
7.5mg pred it was very effective on my ra .. i had no sickness or
anything... but it did affect my way of thinking.. such as talking to people
in the street whom i thought had spoken to me first.. allso doing some
strange things. the arava was stopped due to this.. rheumatologist
said this was common..
i restarted arava in feb 10mg whith bad effect...
first it felt like ice cold water was going in my legs.. then legs became
cold to touch. i became very aggresive. arava was stopped whithin 1 week
i was given a steroid inject.. a lump came up on my lower leg a scan shows
muscle inflamed my blood pressure shot up 165/90something
dont know if arava or steroid inject done this i think arava.. i was still
taking pred as well...bp is still high and taking ramripril ace inhibitor
maybe arava was given to soon on top of methotrexate dose. instead of
waiting a bit.. but all my treatment has been one after the other

Boney
after arava i had gold injections these worked well for a number of years
but i started having breathing probs and my lips and tongue swelled and
i could not swallow.. then plaquinell was started..was on it for a while when
i had a allmighty bang in my chest.. i had a ecg done. when nurse took the first readings
there was a jump on the reading but it never happend after that i was given
a hand held heart monitor. which is placed on the chest and records the heart
if any events occure then call a special number and place monitor on phone
and signal is sent to them.. i stopped plaquinell due to this..
i was allso on 7.5mg prednisone  and steroid injections...
Boney
I was on for 5 months which resulted in a severe allergic reaction to the drug.  Yes, the drug does stay in your system for at least 2 years.  However, the Dr can prescribe cholestyramine,  taken twice a day for 11 days, which eliminates the drug from your system (Dr will do a blood test to be sure the drug is gone).

Although Arava did not work for me, I know 2 people who are on the drug and doing extremely well and suffering no side affects.  Everybody is different and we all react differently to these drugs. 
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