I QUIT MTX TODAY | Arthritis Information

Hey - just wanted to tell someone who would know what I was talking about that I took mtx for 3 weeks.. and each week the side effects lasted longer and got worse.. worst diarrhea of my life, first migraine in 10 years, constant nausea, no appetite....

.. and i quit taking it this week. Still taking plaquenil. I'd rather have my knee drained 4 times a year than live like this.

I haven't called my Rheumy to tell him yet. He's GREAT - i really love him - but he did not give me adequate warning of the side effects of this chemo. It was brutal. I will use it when I have to - until then, it's not for me....

ok. thanks for letting me vent!!

Steph

Steph, I had to quit mtx for similar reasons. Some people like Arava. I opted for Enbrel which is now losing it's effectiveness. I think I want to try Humira. Some of us just cannot tolerate the meds. Vent all you need. RoxanneMTX didn't sit with me either. Nor did Arava. I pushed hard and got Enbrel and it has helped greatly. Well pretty good. Most of the time. Nothing is perfect. Keep tyring the other DMARDs until you find a cocktail that works best.

I had my first dose yesterday. I told myself over and over that it wouldn't make me sick. I took it at work, at 1:00, was very busy and not even thinking about it. Thirty minutes later I wanted to die. Puky, dizzy and feeling horrible. I woke up a while ago, feeling aweful. I'm trying to not hurl....I hate this.

I have been on MXT since June, and since I was already having all the symptoms of the side effects, it didn't make a bit of difference to me to keep the symptoms going. I adjusted my diet, and slowly am getting better and my side effect symptoms are improving. My rheumy says I have to be on it the rest of my life, which I find unreal, but will accept as everything I have read says that MXT is the first "unconventional" line of treatment, and if you stop, withing 2-3 weeks, your RA symptoms come back, even worse. Kinda like an alky who stopped for 20 years, then starts drinking again, it just piles up and takes off again - just my two cents and best of luck.

I've taken MTX for 10 years. I felt 'a little like I had a cold, stuffy and not feeling great, but nothing like you describe! I phone my doctor or his office every day (when they are open!!....doesn't seem like at all)the nurse gets to him and makes suggestions. I'm on MTX 4 x 2.5, taking Remicade 2nd time next monday, and prednisone everyday. I took Actonel Tuesday and am having creaky neck pain has anyone experienced this? There should be a hotline from Rheumatiod sufferers where we can ask questions and get answers.

Hey ladies,

Sorry MTX has caused so many problems. have you thought about injectables? I am using injectable and I have no GI side effects. I do have the "I've been run over by a truck" side effect, but the good outweighs the bad. Hope you find something that works for you soon

Lori

Steph, what dose of mtx were you on? It can and does have side affects but maybe you had too much too soon? Could you spread the dose over 24 hours? I think you ought to see or at least phone your rheumy asap. There is the option of injecting which apparently has little or no side affects.

I've been taking 7.5 mgs since july '05, for the first couple of weeks I thought I'd eaten a landfill on a hot day. I might have to have a break from it, my rheumy said it takes 8 weeks to leave the system so I won't instantly flare.

I've just re-read my post...........the potential break from mtx and the landfill affect are not connected

I would try the injectable mtx. Like Lori, all I get is that exhaustion the next day from it. Injecting avoids the GI upset and it absorbs faster and better into your body. Just make sure you still keep taking the folic acid if you decide to switch.

Some people can not tolerate mtx no matter what form it is. Also, it takes awhile sometimes to find the right combo of meds for an individual person.

Draining and shooting cortisone in your knee every four months is a lot. Is your knee to the point where they have to replace it?

MTX wasn't too bad for me...as long as my diet was good and I got lots of rest. I'm now off it thank goodness, but it took a long time (about 6 months reducing my dosage by 5mg about every 4 weeks) to wean my body off it without my knees or wrists flaring.

Not sure if draining & cortisoning the joints are a good thing every 4 months, I've heard cortisone can actually cause more damage in the long term (weakens tendons, softens cartilage), so be careful...

Okay, so what exactly is the MTX for? I know, probably a dumb question, but I'm on the Prednisone for swelling and pain, and now the MTX (I thought to help with further damage to joints?) and then I'll start Plequinil next. Am I correct? I'm hoping my second dose is better than the first cause it was horrible.This discussion on MXT is fascinating. I am being told MXT is to slow down the destruction of the joints and help with the deformations. And I am being told I have to stay on it all my life, and once you stop, the symptoms come back worse than ever. Now, since I call it "practice" and "differential doctors disease", and that each of us are individual snowflakes with our autoimmune disease, its up to each of us to find our own way that works best. Diet, rest, dont drink or smoke, research, find a decent doctor who doesnt patronize you and seems to have a clue, and hang in there one day at a time. I do not believe there is "one cure" for any of us, it's all individualized and we are being hurt the worst by the insurance companies trying to box us into a ICDM code diagnosis so they have a reason NOT to pay these doctors who spent alot of their early years earning the right to practice on us. IMHO ~~ CI had good luck with avara. It can thin the hair but it worked great for me. I stopped it and may start it up agai this week. I had to stop because I had strep throat. It was sooooo much better on stomach and everything , had almost no side effects then that MXT... I hope you can find something that helps... Try the meds... don't be afraid... they can help. I was so scared at first... Wow. you guys are great. Thanks for sharing your stories. believe it or not, i haven't called the dr. yet. I think i'm living in bliss for the moment..

i work out - was at the Y twice today! - and am trying to be healthy to take the pressure off of my knees. He told me he thinks i'm too young for a replace [will be 36 on friday!] but that there's certainly one in my future. nothing flared up when i stopped the meds.. was only taking them one day a week, 4 pills staggered over 24 hours. i'll start them up again if i need to. he hoped that it would slow the swelling/flare ups....

thanks friends!
steph

The mtx stays in your system for up to 3 months, so even if it was working you'll be okay for a while. I've been on methotrexate for over 7 years. It took my body about 4 months to get used to it. I no longer have any side effects. I always waited until Friday night to take it and was no good for about 12 hours.

I've been on MTX continuously since 1999 and before that from 1992 - 1996. (The gap in between was to try for children).

I started in about 10mg in tablets and stayed on that for the initial 4 years. Since 1999 my dose was increased to 25mg orally until about 3 years ago. It wasn't being as effective as it was and now I have an injection of 25mg once a week. I take 10mg of folic acid about 3 days after. Fortunately I have not had any major side effects. Although I do feel wiped out sometimes the couple of days after.

I didn't realise that tiredness WAS a side effect until I first came on this site. I've learnt a lot here, reading how others feel and cope with RA.

I'm aslo on Plaquenil and Arava as a triple combination, and I must say that for me it's working.

Good luck. It really is trial and error with the meds for RA. You'll find the right combo eventually.