The seven dwarfs of Lefluonimide

[Azabat]

So far there's Queasy, Dizzy, Snoozy, Dopey, Head-pounder, and Without-Appetite. I've been warned that Runny may be waiting in the wings, but so far hasn't made an appearance. I bet Snow White would never have put up with this lot!

[Hidden]

Ha ha Mary - I never got to Runny without Appetite (skinny?) Leflunomide but Azathioprine would be "doubled up in Agony vomiting Bile -y" for me! Do you have to try them all before you are allowed to try anti tnfs? X

[Azabat in reply to Hidden]

My rheumy wants me to stick this one out for six weeks then we can try the other stuff. I'm hoping this will ease off, but if nothing else it's a good distraction from the pain in my hands. I don't think I'll ever quite manage skinny, but yesterday's food consisted of 2 bananas, a piece of cheese, and a spoonful of peanut butter (not all at once). I'll try to do better today, but it's hard to concentrate for long enough to get food into me. I am so very very stoned. I wish it were fun

[Hidden in reply to Azabat]

I do relate - my physio asked me today if I'm remembering to eat as she massaged my back. A sure sign the weight is dropping off. I'm only on Dihydrocodeine and Lactulose now and I'm quite stoned too but not enough! I received my latest NHS hospital discharge letter today stating Alergies as being Sulfa, Hydroxy and Azathioprine - no mention of two years of MTX but spewing both ends for days a week latterly won't be something I forget. Oh to be one of the many who DO tolerate these drugs and DO go on to much better things such a life! X

Ps I pigged out after seeing gp today - skinny cappuccino, bacon toasty with gluten free toast (no butter) in a cafe and later at home a tin of mackerel with cottage cheese and an apple. A right porker me!

[Hidden in reply to Hidden]

Pps I'm minded to ask for leflunomide once the gallbladder is out. Running to the loo might make a refreshing change from slugging Lactulose with Dihydrocodeine!

[Jacki08]

Just had a quick look on here before " dashing" - ( I wish; ) off to work. That post made me laugh. You are so right chick--- keep smiling xx

[medieval-ali]

Hi I'm on Leflunomide too, can't remember getting any of these symptoms on it, you haven't said how long you have been on it?

It could be that you have caught a cold at the same time as starting, colds take longer to get over on this drug,

Give it a bit longer, I had one chest infection that took 3 months to cure, but have been healthy for the majority of the time on it.

TNF's on the other hand are giving me probs atm, so it's all trial and error.

Good luck. Hope you improve soon.

Alison x

[Azabat in reply to medieval-ali]

I've just been on it since Thursday, and only stopped sulfa the same day, so I know it's early. It was also methotrexate Friday, soo it's probably all still playing off each other. Thanks Alison x

[Hidden]

Dizzy, Dopey, Disconnected, Brain Affected, Lunatic and Dumbbell. (and then me) I used to take the drug so I can say this for sure. haha. I didn't have much of

an issue with it until later down the road my liver started in...it said no way are

you going to put this stuff in. so I had to quit. Boo.

[Azabat in reply to Hidden]

I think I like your names better, but do the side-effects get any better? I've only been taking it since Thursday and I utterly cannot function

[Hidden in reply to Azabat]

I had mild side effects until one day I went in and my doctor went

Gasp!!!! Karen, you can't have Leflunomide no more. I was really

sad because it was doing the job so well. It kept everything

bad away. When I started back with you folks just about 8 months

ago I was complaining just about my wrist, a pinky and my spine. Now it's widespread pain and really bad in my foot and ankle I just found out. I am all for that drug if you can tolerate it. I would take that drug any day over methotrexate... but that's just me. XX Karen

[Hidden]

I've been on Leflunomide for years, too many to remember. Both at 10mg and 20 mg. Haven't had any of these side effects at all. Also on MTX injections.

[Hidden in reply to Hidden]

So you are on both or left one and started another ? Things are changing so fast in the medical world that I don't pretend that I can keep up. It wouldn't surprise me if they doubled up on anything anymore. I believe that the mix that I have is chemo based Rituxan and Methotrexate is for sure.. probably has the same stuff in it. lol..

[Hidden in reply to Hidden]

Started on 10mg alongside Methotrexate 25ml injections. Had to stop MTX because I needed to have chemotherapy. After cancer treatment I was put back on MTX 20mls and Leflunomide was increased to 20mg. Then MTX was increased to 25ml again so Leflunomide was reduced to 10mg. Just to add to my confusion, MTX has now been reduced to 20ml again due to liver enzymes. Leflunomide is apparently staying the same.

[Hidden in reply to Hidden]

Crazy, isn't it. Do you ever shake your head because you went through it all and it doesn't seem real? I do all the time now that lm halted. I ant believe the terror of taking these drugs and now l have liver and kidney failure or at least a big bruise that will last for a long time. I was the one again. The one in a hundred. My bones hurt today.

[gillpalmer]

I also am on Leflunomide have been on for three years the only side effect I had was running back and forwards to the toilet but this settled down after a few weeks since then no problems. Started on 10mg now on 20mg. Hope all settles for you soon.

[keffi]

Poor you. When offered my new TNF treatment I went with HUMIRA as reports were good.

[Hidden in reply to keffi]

Isn't that odd how one loves a treatment and one hates it?

Humaria had the most painful injection of all that I've ever

taken in my life. Now that's me. Maybe

[keffi in reply to Hidden]

Just using a pen and seems fine. I think for all of us its a case of different tolerance levels of certain drugs. Mine still being changed after 10 years. Because we have suppressed immune systems, our bodies just try to deal with this huge problem. Good luck with your next lot of meds.

[Bob11235]

Wow that sounds awful especially since using MTX has made me miserable in only a couple of months.

I hope your body adjusts to the medication and you feel better.

Bob

[Azabat]

I am starting to bounce back, I think. I started taking it at bedtime, and that's made an enormous difference in how I feel. I don't think it's making much difference, but none of them do, early on. The weather has turned from rain to +30 C in a matter of a day, but I'm so glad to see the back of the rain that I don't even mind the heat

[allanah]

Sound like me on mtx! Thankfully doc stopped it again on friday so just ritiximab and lefLunomide now and no probs!!!!

[Azabat]

I'm glad you're feeling better

[Kathyfitz12]

I've been on Leflunomide fir 4 months now & no nasty side effects so far - but I just have no appetite- I have lost 25lbs in the 4 months. Has anyone else lost axlot of weight & stayed on it?

Just wish there was one all encompassing pill without side effects that treated this wretched condition.