Sign in

or Register now

MyRACentral.com

See all of our health sites at www.HealthCentral.com
Monday, November, 23, 2009
  • Font size
Receive a FREE Osteoarthritis of the knee pamphlet.  Start here.

I want to stop the methotrexate

amy's compassion
amy's compassion
Close
trying to master ra so I can enjoy those I value

My loves include my 16-year-old daughter, a patient and loving...

amy's compassion

Saturday, March 21, 2009
View All of amy's compassion's Posts
I just can't live with this nausea, numbness, dizziness, and incredible fatigue from the methotrexate. So many of you guys have had some success after a period of adjustment but after five weeks, I'm just getting sicker. I am up to 12.5 mg per week; I don't know if that's high or low but evidently it...
  1. MXT HELL
    bj in pain everyday
    Saturday, March 21, 2009 at 08:55 PM

    Amy,

     

    I had to stop MTX as it did the same or me as well. I could not live with it as well. Not only did it help my joints, but at the same time it destroyed my immune system. I had pneumonia 3 times and took MXT for over 6 months. It was because of this that I finally gave up on my bad rheumy and got a new guy. MTX is not the only drug. Please make a appointment now and speak with your rheumy that you simply cannot take this drug. Ask for other options. Make sure you are drinking plenty of water, and try some antacid, pepto helped me with nausea as well as alka seltzer.

     

    Basically when you stop (at least in my case) you feel better. It takes a week or so, but you will feel better. I did not have any side effects from stopping. I did relapse and had a flare. the new drugs I am on are much better for me. As you know one size does not fit all when you have RA. Get your doctor to try other meds. Or find a rheumy that will customize your treatment to you.

     

    Best of luck.

    BJ

    Reply
    re: MXT HELL
    bj in pain everyday
    Saturday, March 21, 2009 at 09:04 PM

    Oh I forgot, I was on 16 MG oral once a week, and because it made me so sick orally my old rheumy put me on .6 ML subcutaneously injection once a week. I don't mind sticking my self so the shot took away some of the stomach nauesa. But ultimatly I had to stop it. I take Arava and Enbrel (have to stick myself with Enbrel) and I am having good success. However it is too soon to tell if it will last.

     

    I think you are on a normal dose. Please speak with your rehumy.

    BJ

    Reply
    re: MXT HELL
    amoto99
    Sunday, March 22, 2009 at 09:03 AM

    Hi bj,

    May I ask how you went about stopping the methotrexate? I mean, did you just suddenly stop taking it or did you taper back, like prednisone? Because I don't plan to take ANY anymore. I so truly appreciate your help.

    Reply
    re: re: MXT HELL
    bj in pain everyday
    Sunday, March 22, 2009 at 03:40 PM

    Amy,

    I went to my Rheumy, and he told me to just stop. So that was what I did. I had no side effects from stopping, and I just gradually got better. It will take about a week or so before you start feeling better.

     

    BJ

    Reply
    re: re: re: MXT HELL
    amy's compassion
    Sunday, March 22, 2009 at 05:15 PM

    Hi BJ, that's what I think I will do. It's good to know I won't go into some weird withdrawl or something. I'm also calling to schedule a consult with a different rheumy tomorrow. thanks for telling me...Amy

    Reply
  2. High Amy!
    MsFluttersBie
    Sunday, March 22, 2009 at 02:44 PM

    Patience you have only given it five weeks, the side effects will taper off, get some marijuana, don't worry about eating a meal, snack on crackers and chicken soup, drink lots of water, and give the Kemotherapy a chance to work! Remember you don not have cancer and the level you are taking dosent compare to te extensive amount that you would have to take if you were Fighting Cancer!

     

    My Black lab had got hit by a car and had brain swelling, she after recovering had seizures, the first three weeks of taking Phenobarbitual, She couldn't walk and was lethargic, listless, then her body addapted to the chemical now she runs and plays like she did before, so give your body time to addapt to the chemical that will taper thee agressiveness of your ammune system. 

     

     

    I Love Ya Girl! Hang in there! The dizziness and nausia are the Methotrexate, but the  fatigue and numbness are part of having RA and something you will learn to live with, Yoga, stretching, jacuzzi, increase ciruclation and that can eleviate the numbness,  High vitamin and mineral intake with diet and exercise will eleviate the fatigue.  Even when you feel too tired to move push your self to swim or walk, excercise makes your body produce (endorphins) Natures Crack!  Love You, Till Later, P.L.U.R.

     

     

     

     

     

     

     

     

     

        

    Reply
    re: High Becky Sue
    amy's compassion
    Sunday, March 22, 2009 at 05:12 PM

    I know, you're right about only giving it five weeks but it's making me so sick. Every week is worse. The RA causes all of us to have a certain amount of fatigue but this isn't the RA - I'm fine on Monday through Thursday until I take the Metho. Then it's like I got hit by some sort of deranged truck. I have dry heaves, too. And my fingertips feel like cotton balls. I just don't see the point now because I felt a lot better before I started this stuff. Today was better than Thursday so tomorrow will be better, too. I just can't tolerate this chemical. ugh. Thanks for your caring and you are awesome girl. ---Amy

    Reply
    re: re: High Becky Sue
    MsFluttersBie
    Tuesday, March 24, 2009 at 01:42 PM

    Well Then Definately stop taking it! I think Sometimes living with RA is "Better" HAHA! than the Crazy Chemicals and their Crazy side effects! Well Till Later Take Good Care!

    Be Positive and "Every Little Thing Is Gonna Be Alright" Love You!   P.L.U.R.

    Reply
    saying "later" to the MXT
    amy's compassion
    Tuesday, March 24, 2009 at 09:42 PM

    Okay I've had enough of this methotrexate crap. My rheumy wants me to stop, too. He prescribed something else. I just want to detox. RA may be the pits but some meds are even worse. You are sooo right that "every little thing is gonna be alright." Be good, my friend....amy

    Reply
  3. By the Way?
    MsFluttersBie
    Sunday, March 22, 2009 at 03:08 PM

    When you say sicker is it a lung or sinus infection? Are you prone to them?

    By sick do you mean the fatigue and numbness are getting worse? or the nausia and dizziness?  Or does it feel like a cold or flu that won't go away?  let me know?

    Reply
  4. metho reactions
    TNcreativelady
    Monday, March 23, 2009 at 06:22 PM

    Hi,

    I tried methotrexate for 7 months by injections once a week and was horribly ill from it to the point I was in the bed from Friday after work when I took the injection from the doctor until Monday morning. I explained this to the rheumy I had at the time. He refused to consider other possiblilities (granted it was 1994 & there were not as many options). However, when he said to me"If you want to be my patient, you will take it!" My reply? Guess we are done then! I stopped it immediately and found another rheumy. No effects from stopping aburptly, other than relief!

     

    Later I found out that the reason I was so incapicatated (extreme fatigue and nausea) from the drug was that I had had Hep C and hadn't know it, so the drug was just too hard on my liver. I still have to be careful of what I take and the impact on my liver.

     

    I do not agree as one commenter stated that you should keep at it as it is not as large a dose as some cancer patients. Bottomline I believe you should listen to your body. No one else but you should ever tell you what to do, listen for options and speak up when it is not working...be proactive but don't panic. I have found that the joint damage comes slowly.

     

    I was diagnosed in 1993 when my spouse of 24 years left. I became a single parent of three teenage boys without any support from family, in a new community and had a horrible boss. It was tough but it is amazing what one can handle. Keep focused on creating a healthy, happy life and finding blessings and joys in what is around you. You will get through this one step/day at a time.

     

    Diana

     

     

     

     

    Reply
    re: metho reactions
    colleen
    Monday, March 30, 2009 at 10:26 PM

    Amen!! I have heard sooo many bad things about methotrexate, i wont go on it. My Drs want to try becasue i have bad reactions to EVERYTHING else. I have way too many bad reactions and allergies and have problems with my eyes , stomach, and reactions so he is putting me back on prednisone again. i cant take all the other injectables. i also have 3 other people i know who had to go off it also because it ruines their liver.  So listen to your body!! i hate the pain i am in everyday 24/7 but cant stomach the sickness it causes and the liver problems. i know there are some people who do well on it but they must be normal with no other problems?? colleen

    Reply
    re: re: metho reactions
    TNcreativelady
    Tuesday, March 31, 2009 at 12:15 PM

    Colleen,

    I read an article the other day that stated that even with methotrexate and the other biologics that came out in the past 9-10 years, RA suffers do not have substantially better results.

     

    I have tried them all it seems. I'm in a funk about it...wanting to have good quality of life but wondering whether that is possible when so many reactions and liver damage come along with these utterly expensive drugs.

     

    Personally I'm at a lose.  Family and friends are having a hard time understanding my present position not to take anything. Everyone has an opinion. Ultimately, it's mine to make and for now I'm saying no to the drugs. I do reserve the right to change my mind.

    Blessings to you.

    Diana

    Reply
  5. metho reactions
    TNcreativelady
    Monday, March 23, 2009 at 06:24 PM

    Hi,

    I tried methotrexate for 7 months by injections once a week and was horribly ill from it to the point I was in the bed from Friday after work when I took the injection from the doctor until Monday morning. I explained this to the rheumy I had at the time. He refused to consider other possiblilities (granted it was 1994 & there were not as many options). However, when he said to me"If you want to be my patient, you will take it!" My reply? Guess we are done then! I stopped it immediately and found another rheumy. No effects from stopping aburptly, other than relief!

     

    Later I found out that the reason I was so incapacitated (extreme fatigue and nausea) from the drug was that I had had Hep C and hadn't know it, so the drug was just too hard on my liver. I still have to be careful of what I take and the impact on my liver.

     

    I do not agree as one commenter stated that you should keep at it as it is not as large a dose as some cancer patients. Bottomline I believe you should listen to your body. No one else but you should ever tell you what to do, listen for options and speak up when it is not working...be proactive but don't panic. I have found that the joint damage comes slowly.

     

    I was diagnosed in 1993 when my spouse of 24 years left. I became a single parent of three teenage boys without any support from family, in a new community and had a horrible boss. It was tough but it is amazing what one can handle. Keep focused on creating a healthy, happy life and finding blessings and joys in what is around you. You will get through this one step/day at a time.

     

    Diana

     

     

     

     

    Reply
  6. Untitled Comment
    Lene Andersen
    Tuesday, March 24, 2009 at 12:12 PM

    Different people have different reactions to medications and each of us decide what is a tolerable side effect and what isn't. What you're describing certainly sounds like intolerable side effects - this medication is supposed to help you feel better, not debilitate you in another way. That said, you may want to consider moving more slowly with increasing the meth. I am very sensitive to medication and any time I start a new medication, I insist on starting at half the regular dose and increasing the medication as my body adjusts, i.e., with me assessing whether I'm ready for the next increase instead of blindly following the "accepted" way of doing it. This confused my doctor in the past, but she's come around after years of witnessing that this works for me. You have options - you can either go back to your doctor and put your foot down, requesting another type of medication or you can decrease your dose significantly and see if you body adjusts in such a way that the side effects are tolerable.

     

    Good luck - please let us know about your progress.

     

    Reply
  7. Getting off methotrexate
    Tisha
    Friday, April 03, 2009 at 01:36 AM

    I was told by my Dr. that it is very dangerous to just quit metho. I have been on it foe 8 months so I know how your feeling..I'm also fatigued the day of I'm mostly in the bed. Everyday after that , is just slowly allowing me to move a little more..then here comes tuesday again ! Then the cycle starts over..I take 6 tabs every tuesday..my Dr. told me to up it to 8 tabs , but I got so sick and vomiting the next week I took 6 and told him I cannot do the 8..I also take a low dose of predizone 5mg every morn to keep the swelling out of the joints..thats what causes the pain..Since I started the predisone I don't hurt in my joints as bad. The Mexotrexate is only for slowing down the RA that is attacking your joints and eating away at your joints...So if you stop it, then you will have a relasp that can cause immense damage to your joints and will make it harder to try to get it into re-mission . I thought the same too..I wanted off.!But I also want to be able to walk and not be in a wheelchair ! By the way I take 15mg per week..At first I bought Immitrol for nausea and took it 30 min before taking my pills and it works..But I don't need it hardly anymore. Hope this helps!

     

    Tisha in N.M.

    Reply
    re: Getting off methotrexate
    amy's compassion
    Friday, April 03, 2009 at 05:26 AM

    Hi Tish, thanks for your post - I didn't go off of the methotrexate without my rheumy's approval. He said to stop it completely and start on the Arava, which I haven't yet started. When I finally said "enough!", I put a call into him and he said to just stop. No problems at all and it's been more than a week now. Everyone reacts differently, as you say. I will continue with the meds because of what you mention - joint damage. I still take a small amount of prednisone and plaquenil for now. But you bring up an excellent point - don't just discontinue any of these meds without consulting with your dr. first. Thanks again and hope your ra is managing well. Blessings.

    Reply
  8. methotrexate
    Linda
    Tuesday, April 14, 2009 at 10:13 AM

    I have been on 10 mg for yrs and had no ill effects, so maybe your rheumy can lower your dose.  Mine just increased mine to 15 mg.  I took it yesterday and am ok so far, just a little tired.  I stopped and got some nausea med on the way home but didn't need it.  My doctor prescribed Provigil to take for the fatigue.  I also take Orencia IV but my sed rate is still 95.  I don't think I'm getting better but I'm not any worse.  :)

    Hang in there and good luck!

     

    Linda

    Reply
  9. Untitled Comment
    kim
    Thursday, November 19, 2009 at 11:35 AM

    Alright, heres my say. Im 17 yeas old, i ws diagnosed with ruematoid arthritis a year and a half ago. id been on mtx and prednisone for the first year. i was up to 20 mg of mtx. i tapered off the prednisone, and im completely off of it. but my dr. told me i had to wait till i was 18 to try tapering off of my mtx. i was sick of the side effects, and just thinking about swallowing the drugs makes me ill. one day about 4 months ago, i decided to just stop taking it. ive had no flares since. altho this probably isnt recomended, it worked for me.

    Reply
    I think it's good
    amy's compassion
    Thursday, November 19, 2009 at 07:36 PM

    You listened to your own body and made a good decision to stop the mtx.  I think each of us has to do what we feel is best in our situation. What might work for one wont necessarily work for another. I think it's great you got yourself off everything in your own way and it's been a good outcome. Congrats.

    Reply
  • Font size
  • Bookmark
  • Thank you for your input
  • Save
  • RSS
  • Report Abuse

Ask a Question

Get answers from our experts and community members.

View all questions (1955) >