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Leflunomide or specifically AVARA? Options
Anne Kakouris
#1 Posted : Friday, August 09, 2013 2:18:54 PM Quote
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Joined: 1/13/2010
Posts: 4
Just stumbled across a thread which suggests serious trouble from side effects only happened when switching to brands other than the AVARA brand of leflunomide. Does anyone have experience to support this theory?

I saw my consultant last week and requested a 'flush out' of leflunomide even though I had stopped taking it 6 weeks ago. Only on two conditions; that my liver was struggling (which it had six months earlier but settled down) or I was planning pregnancy (not!).
This week I visited my G.P. because I felt I could no longer manage the inflamed red blotches on my face and neck. He prescribed me a 'neutral' moisturiser to rehydrate my skin while he sent swabs off for analysis for a skin infection. I gave him a long explanation about my theory of intolerance to leflunomide and denial of 'flush out'. Two applications of moituriser saw me in A&E with blindingly inflamed face and a course of 120mgs of oral steriods over three days!
Currently, my face is brittle with dry, flaking skin... can't look up case I break my eyelid/neck skin.
I found that, increasingly, I could not tolerate environmental factors, specifically sunlight AT ALL, plants, cleaning products.... living?!
Prior to this I suffered up to seventeen hacks on my fingers, my eyelid/skin behind my ears/corners of my mouth kept spliting.

Though, initially, my favourite drug to date had been leflunomide. Initially, I was prescribed AVARA and subsequently, many other brands, never consistent. My consultant's plan is that I move on to methetrexate injections with rituximab but I am wondering if I have really exhausted my options with Leflunomide. Methetrexate made me nauseous when I took it years ago.

I'm thinking 'flush out' and stick to straight AVARA. I'm even prepared to go through baldness and stomach trouble again.

Does anyone have a view on brands of leflunomide and their effectiveness?
Cheers,
Anne
bevie
#2 Posted : Thursday, August 29, 2013 11:32:55 AM Quote
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Joined: 12/4/2009
Posts: 346
Hi Anne, sorry you have been having problems with leflunomide. I too have had problems with it. I was put on it after being taken off mtx due to low white cell count. After five weeks of leflunomide I developed itching skin, diarrhoea, and double vision. The rheummy nurse doesn't think the eye problem is due to the drug but i have now been taken off it, and left with nothing until it gets out of my system. This was all with Arava.

Bev

Paul Barrett
#3 Posted : Thursday, August 29, 2013 4:50:58 PM Quote
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Joined: 4/24/2013
Posts: 703
Location: Hexham
The problem that you are going to have Anne, I suspect, is a degree of disbelief from the professionals. Whether it's the branded version or a generic, the ACTIVE ingredient will be identical. So, either you are having side effects from the active ingredient or you are reacting to the other components that are used in the specific generic preparation that you have been prescribed, which will be very similar to the branded version. To be sure you need to do a bit of sleuth work by comparing the list of other ingredients in each preparation to see if something stands out that might be the cause. If the list of extra ingeedients is identical you are probably reacting to the active ingredient in which case it doesn't matter whether you take branded or generic - the effect will be the same - and you would probably therefore be better off on a completely different anti-TNF.

Incidentally there's a theory that pharma companies make the chemical names of their drugs complicated so that the doctors will use the branded name for convenience. This allows the brand holder to make extra profit because the pharmacist has to dispense exactly what the prescriber ordered. Adulimibab versus Humira - which do you find easier to remember?
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

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