Methotrexate, anyone?

[frances1]

Has anyone had any experience taking this drug? For those who don't know, it is a type of cancer drug that was found to be effective in the treatment of rheumatoid arthritis. I've been taking it for several years, but about six months ago, I started having bouts of nausea, and wondered if it might be connected. Then about three months ago, came up with thrush in my mouth, took the pills, got rid of it. Two weeks ago - thrush again, another round of pills, but this time it hasn't gone away. I was on eight pills (20 mgs) one day a week, along with three folic acid tablets daily. Lately also, my stomach and esophagus have felt like they're on fire. That could have been the thrush meds, I guess.
In any case, I talked to my rheumatologist today, who told me I could go off the mtx, to see if things get better, and to call the office if RA symptoms start to return. I'm hoping someone here has or is taking the mtx, and tell me if they have ever gone off. Frankly, at this point, I feel I'm willing to hurt a little more in order to be rid of all these nasty side effects. Forgot to mention the hair thinning and loss, the fatigue, and last but not least the compromised immune system. Can someone who has gone off the meds give me a ray of hope that things will improve at least for a while if I take a break from MTX?

[SKARDYKAT]

What a darn shame you have to go through that. When I started mtx I was afraid of the side effects and was pretty lucky. When it doesn't work anymore, you just move up to another drug that gives you either more or worse effects. There must be an alternative. I have opted for the pain at times though so I know where you are coming from.
I have gotten a lot of information, links and support from the following site. You might try it since lupus is a form of RA.

http://www.thelupussite.com/forum/

[frances1]

Thanks, Skardykat.

[airportwoman]

Everything you mentioned is a potential side effect of methotrexate, although it's unusual for something to show up after you've been on it this long. Are you taking, or have you discontinued, any other drugs?

[cookiedog]

I had the exact experience you are having. Mex. worked very well for me for a couple of years. (I have polymyositis.) Then I started developing nausea, several infections and a general lousy feeling.

My rheumotologist switched me to Enbrel which worked great for me.

I now have severe liver disease and am very limited in the drugs I can safely take. I am currently taking Cellcept and Prednisone and the combination is working very well for me.

[DDD]

I have had RA for the past 16 years - diagnosed at 35 after having late stage Lyme disease - DR not sure if it is connected. Was on Methotrexate in the past for a few years without and side effects - seemed that the RA went into remission so was able to get off prednisone and metho but after severe flares last year am now back on both. Have had such severe joint inflammation and pain in the left ankle for about 2 months now that I now have to begin Humira injections every 2 weeks along with the metho and prednisone.

Have to weigh the alternative, not being able to function in a somewhat normal life or going ahead and hoping that the combo will help.

I have never had any side effects from any of the meds except the weight gain from the prednisone and even that my docotor has said is minimal compared to what most people experience for the dosage and length of time.

Hope all works out for you! I learned at an early age just why they say that RA is a crippling disease. Been there and done that!!

[frances1]

Everything you mentioned is a potential side effect of methotrexate, although it's unusual for something to show up after you've been on it this long. Are you taking, or have you discontinued, any other drugs?

Yes, Airportwoman, I'm on other meds, but nothing has changed. My rheumatologist has recommended Remicade for me, but said I would probably still have to take the Mtx. I had breast cancer three years ago, with chemo, so don't know how my veins would do with that. I guess I was just hoping that I could maybe do without an arthritis med, but maybe not.

[CelticDawn]

Yes, Airportwoman, I'm on other meds, but nothing has changed. My rheumatologist has recommended Remicade for me, but said I would probably still have to take the Mtx. I had breast cancer three years ago, with chemo, so don't know how my veins would do with that. I guess I was just hoping that I could maybe do without an arthritis med, but maybe not.

I only have early RA and have taken MTX....but have found that Orencia has made the MTX unnecessary.

[whitedove007]

Has anyone had any experience taking this drug? For those who don't know, it is a type of cancer drug that was found to be effective in the treatment of rheumatoid arthritis. I've been taking it for several years, but about six months ago, I started having bouts of nausea, and wondered if it might be connected. Then about three months ago, came up with thrush in my mouth, took the pills, got rid of it. Two weeks ago - thrush again, another round of pills, but this time it hasn't gone away. I was on eight pills (20 mgs) one day a week, along with three folic acid tablets daily. Lately also, my stomach and esophagus have felt like they're on fire. That could have been the thrush meds, I guess.
In any case, I talked to my rheumatologist today, who told me I could go off the mtx, to see if things get better, and to call the office if RA symptoms start to return. I'm hoping someone here has or is taking the mtx, and tell me if they have ever gone off. Frankly, at this point, I feel I'm willing to hurt a little more in order to be rid of all these nasty side effects. Forgot to mention the hair thinning and loss, the fatigue, and last but not least the compromised immune system. Can someone who has gone off the meds give me a ray of hope that things will improve at least for a while if I take a break from MTX?

My name is White Dove and I have been taking mtx for about 8 years. I only take 7 pills once a week. Your taking 8 could be too much for you maybe you should talk to your DR. to lower it a bit might help! When I first ever took it I got sick but 8 years later doing fine!!!! also my hair is thin but it's always been that way. 3 folic acid day wow that alot.....I only take one a day!

[CelticDawn]

My name is White Dove and I have been taking mtx for about 8 years. I only take 7 pills once a week. Your taking 8 could be too much for you maybe you should talk to your DR. to lower it a bit might help! When I first ever took it I got sick but 8 years later doing fine!!!! also my hair is thin but it's always been that way. 3 folic acid day wow that alot.....I only take one a day!

when I was taking methotrexate, I took five pills a week. That seems like a lot in both of your cases. at first, it was only 4 per week, ....when it was raised, the doctor decided to switch me to Orencia. Now that works wonders!

[whitedove007]

when I was taking methotrexate, I took five pills a week. That seems like a lot in both of your cases. at first, it was only 4 per week, ....when it was raised, the doctor decided to switch me to Orencia. Now that works wonders!

Yes I started off with three MTX a week....then the DR. kept increasing it till now 7 a week! Then he started decreasing it got down to 2 a week I hurt like heck. Then started it back up slowly till back to 7 again. So 7 works for me! RA is a pain in the butt.....

[Mamie]

when I was taking methotrexate, I took five pills a week. That seems like a lot in both of your cases. at first, it was only 4 per week, ....when it was raised, the doctor decided to switch me to Orencia. Now that works wonders!

I started out on methotrexate by injection at 50cc's once a week, but of course that was when I was taking 10mg each day of prednisone, too. So after a few months on the prednisone I was decreasing slowly on it through doctor's orders and am now down to .5 mg per day but the mtx is up to 100cc's or 25mg once a week, and has been that way for a couple of months or so. I am in pain and don't see any difference in taking the mtx or not taking it. Maybe I should not take it for about three days (past the week time) and see how much pain I am in. Anyhow, I need something else and don't know what to take. I go see my rheumatologist the middle of this month so I will ask her for something else that works. She was going to put me on (and I even paid for and took delivery of it) a medicine that I shouldn't take because I take carbamazapine for my epilepsy. I'm surprised I even got prescribed that but I'm glad that I read all the poop that comes with the medication because that's how I discovered it.

Anyhow, getting back to mtx, I took it both times I had breast cancer and it didn't thin out my hair but towards the end of my chemo treatments (6 months worth each time) I started getting nauseated but the mtx was in with four other cancer meds in an IV drip so any one of them could have been doing it. So far, now, I have not noticed any side effects in taking the mtx and am now taking it in pill form (10 pills one time a week) since I cannot get the injectable anymore.

[Lyndawitha"Y]

Hi, just thought I would add a few things here. I am involved with the use of bologicals and have been for many years...Remicade is a great drug, and has been very beneficial for many of my clients. The only issue is that it required you to take 4 hours every 6-8 weeks to go to a clinic to receive the infusion. I attended a seminar a few months ago and learned about the latest and greated biological that has come to the market...Its called Simponi..or Golimumab..here is the link to read up on it..
Simponi is a self injectable..you are taught to give yourself..and it comes in a self-injector type thing..like "Epipen" for anaphylaxis. Anyway its a once a month injectable..and so far has proven to be quite effective...

Check it out, and see if it would be applicable to your own cirumstances.
http://www.simponi.com/simponi/about-SIMPONI/

I wish you all the best!!

LMS:smile: