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My Experience with Methotrexate

I’ve always been pretty easy-going about my Rheumatoid Arthritis medications. I trust my rheumatologist 100% and know he takes my size and stature into account when prescribing meds. I am precisely the size of a gerbil so I am sensitive to most medications. Of course, I don’t blindly take whatever he gives me. I do my research. But, I also know that he wouldn’t suggest something that was more unsafe than effective. All that being said, when he wrote the script for Methotrexate, I threw it out.

It scared the living daylights out of me

My mother had cancer and underwent chemotherapy. I knew my dose was nowhere near as high as hers but I worried about the same side effects: nausea, pain, fatigue,hair loss, hair growth, anemia, infections…I’m sure the list went on…

I felt fine (or, not so horrible I needed chemo!) and didn’t want that kind of medication in my body. Up until this point in my life I refused most medications (with the exception of steroids for my sinus infections). I didn’t even take a multi-vitamin! Getting on a cyto-toxic medication was 0-60 for me and I couldn’t wrap my head around the concept.

“So, how’re you feeling?”

“Not fabulous”

“Changed your mind about the Methotrexate?”

“…Yes…”

My rheumatologist is a kind person and never pushes me to try new medications unless I, myself, am ready. He knows how stubborn I am and I quickly dig my heels into the ground.

Thinking about the treatment

I finally came to the decision because I needed something more than steroids to feel better. And you know what, he was right. My RA felt better but, as predicted, I ran the gamut of side effects, even with a Folic Acid supplement (which was meant to combat them). I was nauseous, my hair thinned and fell out. I even lost my eyelashes (but only on the left eye, of course). I had the chills. All. The. Time. I was tired and weak. Once, the fatigue and nausea were so bad I was bed-bound for two days.

My doctor and I (and my helicopter father) sat down again and decided on the Methotrexate subcutaneous injections. We adjusted the dose, changed the supplement (to the active form of Folic Acid – Leucovorin Calcium) and changed the time I took it.

My experience with my new treatment

This new regime was a game-changer. The new supplement helped ease the hair loss and anemia almost completely. The nausea was all but gone now that the pills weren’t sitting at the bottom of my stomach collecting dust. (Did you know a good percentage of medications aren’t absorbed and just sit in the stomach?? Yeah, I didn’t either, but that was what was causing my nausea).

The longer I am on Methotrexate the more my body assimilates to its effects. I still get chills (though they come intermittently and are probably unrelated). I am no longer anemic, my period is normal, my hair has thinned but is no longer falling out and my RA is under control (whatever that means). So, I guess for now, I’ll take the Methotrexate.

Have you taken MTX? Good experience? Bad? LMK in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • carlene
    10 months ago

    I started at first with 6and was so sick with that much .,felt like a truck ran over me so the dr dropped it to 2 and over the years I am up to 6 I float between 5-6 pills my dr is into the less med needed the better. She occ tries 5 and I am good for awhile but usually go back to 6. You need to be flexible with your meds. steroids have affects that can be as bad as methotrexate. You just have decide what works for you.

  • lovefrompatrick
    10 months ago

    Hi Monica- I also got a script and threw it away. My RA DR. decided to no longer see me as a patient anymore because of it. I was shocked at the Ra result and was in denial. Today, I now take the shot injection Enbrel and it has helped. It has maintained me at 75 percent better no more and sometimes a bit less. Its my fingers that are still a bit inflamed. I sometimes take diclofenac sod as well and that helps reduce swelling too. I recommend looking into that. it helps. I wish you well! – Patrick

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey Patrick! @lovefrompatrick

    Yikes…I didn’t know doctors couldn’t fire patients?? And what doctor doesn’t work with their patients to find a medicine regime that’s right for them. I second Richard’s comment and agree, it sounds like that was not a rheumatologist you want!

    I am so glad the Enbrel worked for you. I was on it early on and it was not as effective as I would have liked, though, out of all the biologics it was one of the few that worked.

    Thanks for sharing! I hope you continue to feel well! ~Monica

  • Richard Faust moderator
    10 months ago

    Hi Patrick. Glad you found a treatment that has helped you. Glad you, apparently, found a new rheumatologist. The decision on whether or not to pursue a particular treatment belongs exclusively to the patient. A doctor that doesn’t get that and also doesn’t understand the struggle of a new RA diagnosis and illustrate a willingness to help a patient understand may not be the doctor one wants. One of our contributors wrote a ten part series on things she would tell her newly diagnosed self (I recommend all of them). One of the articles is on finding a rheumatologist you can trust: https://rheumatoidarthritis.net/living/no-3-find-a-rheumatologist-you-trust/. Thanks for being part of this community. Best, Richard (RheumatoidArthritis.net Team)

  • sprouts
    11 months ago

    I was on MTX for many years and it was helpful. After about 20 years got very bad sores in my mouth. Specialist tried everything.Drank protein drinks with a straw until I couldn’t do that any more. Had feeding tub and I suggested the MTX was causing it. So I stopped taking it.Mouth cleared up slowly. But without MTX my fingers are now getting disfigured. Just MY reasoning.

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey sprouts!! Yikes, I am so sorry that happened to you! But, I am glad you are slowly getting better (from the side effects).

    Slow progression of side effects make figuring out which med is the culprit so much more difficult so I am very sorry you had to go through that!

    Are you on any other medications right now?

    Thanks for commenting!! ~Monica

  • Casmere
    11 months ago

    Hi Monica, I too trust my Rheumatologist plus my family Doctor very much. I am very lucky to have them both now.

    Yes I have been on methotrexate for 6 months from mid Sept 2016 to mid March 2017. At this time I ended up with a full body burning itchy rash. Saw my family doctor and he knew right away it was the methotrexate. What I didn’t realize was I had a reaction back in November then again in January. In November my upper eyelids started burning with the eye gel I had used for a long time but also my face cream bothered them also. I had to stop using them on my eyelids. Then in January 2017 my inner thighs started burning also with a rash. I couldn’t even put them together at all, the burning was intense. I used some cortisone RX cream I had for eczema and it helped but came back when and if I didn’t use it. In March was when it came out all over my body. Was even hard to wear clothes. Went to family DR and he knew right away was methotrexate. He gave me a better RX cream that I used 2xs a day for weeks to clear it up.

    So I would say was a bad experience with methotrexate for me.
    I seem to react to quite a few RX and OCT meds. I am currently waiting for an appointment with a drug clinic to be tested under their care for different meds (Arava, Codeine) are 2 of them but I refused to be tested on methotrexate and will never take it again.

    All my best to you and hope methotrexate keeps working for you

    Take care Casmere

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey Casmere! Thank you so much for commenting on my article!

    I am so sorry you had that kind of reaction!! I remember having a skin reaction myself but it went away with a steroid cream…However, if I wasn’t careful about keeping my skin moisturized it came back. I never really though it was connected to the MTX! But who knows now right?

    All the best with your appointment at the clinic!! ~Monica

  • Jo J
    11 months ago

    I’m so glad you found a way to benefit from MTX! Folic Acid is incredibly helpful!

    Thank you for sharing a success story. We so often hear the nightmare stories that it makes it hard to understand why anyone would even try some meds. I keep thinking, someone is out there that makes the positive study outcomes! I think they are spending more time living life than looking for relief on the internet 🙂
    Jo

  • Monica Y. Sengupta moderator author
    10 months ago

    Thanks Jo J! I am glad I am one of the “success” stories with MTX. I also think sharing good stories helps bring hope to those who are still struggling to find meds that work. I know I was one of them at the time of my diagnosis but now I feel pretty “normal”.

    Thanks for commenting on my article! It made my day! ~Monica

  • ImSharon
    11 months ago

    Methotrexate lasted a month for me. A LOT of my hair fell out. My eyelashes, eyebrows, arm hair…Nothing came back. It’s been about a year since I was on it. I was SO dizzy I couldn’t drive my car. Could barely hold up my head some days. Nausea. Vomiting. And, some nasty and embarrassing hormone effects. Not sure if it helped the RA, but WHO CARES if you can’t work, grocery shop, watch tv, etc. I mean SERIOUSLY. Nope. Not good for me. Can’t take steroids either (allergic reactions). So, I’m in pain. Almost all the time. Drains me.

  • Monica Y. Sengupta moderator author
    10 months ago

    I am so sorry you had such a reaction, @imsharon!! Sometimes its just not worth the potential benefits if the side effects affect quality of life.

    May I ask? Are you taking any meds at all?

    Thanks for sharing and reaching out on my article!! ~Monica

  • ImSharon
    10 months ago

    At this time, I have my third loading dose of Entyvio today. So far, nothing, except possibly worse pain than before? I have Crohns/IBD with the RA. I’ve been through 6-MP (caused pancreatitis), methotrexate, Humira, Cimzia, Stelara and now this. Not allowed to take aspirin or advil, just tylenol, which doesn’t do anything at all. So, it’s up to my three heating pads or ice depending on the day/type of pain. I WISH that the methotrexate worked! I’m glad it has worked for others.

  • Sierra
    11 months ago

    My experience with methotrexate was terrible. First i had hair loss, mouth sores, rashes that resembled hives and all the fatique that I could handle. My DR. suggested adding Humira – so I tried it – first injection was an instant allergic reaction. Fever, non-stop nausea and throwing up as well fever and extreme joint pain. I had to go off of everything for almost 2 months before the side effects stopped. Now my DR. want to try another ‘cancer’ drug and I am very worried that this will be the same reaction. I am not sure I want to try again.

  • Monica Y. Sengupta moderator author
    10 months ago

    I definitely understand your hesitation, Sierra @4drg5ra!! It’s hard when you’ve had such bad experiences to the first meds.

    Do you know what medication he wants you to try? Sometimes for reasons unknown, the body reacts poorly to one med while it loves another (even in the same group). Have you spoken to your doctor about your concerns?

    Thanks for reaching out and commenting on my article!! ~Monica

  • kat-elton
    11 months ago

    Oh Monica- thanks for making me smile- you are precisely the size of a gerbil I may have to use that line sometime it’s perfect! As for methotrexate I’ve been on it, and like you was hesitant. I remember experiencing the nausea for the first time. I was kayaking for the first time in the ocean with a new boyfriend when it hit. It was all I could do to get in to shore and strip off my wetsuit, I thought I was dying! Not really but it was an experience I never want to repeat. I hope you keep figuring it out with your doctor as well as you have, sounds like you have a good one! And a good Dad…!

  • Monica Y. Sengupta moderator author
    10 months ago

    Yikes!!! That sounds really unpleasant!! Were you taking the pills or the injection? I really honestly believe the pills just sat in the bottom of my stomach and any sort of exercise or movement (not necessarily correlated to the day I took them) would bring on waves of nausea!

    Thanks for commenting, Kat!! ~Monica

  • JENNI60
    11 months ago

    I took MTX in the beginning of being diagnosed with RA and I have severe asthma and it made made my asthma worst in a period of two weeks I could barely breathe.

  • MayteR
    11 months ago

    Hi, I have been on it and Enbrel since May of this year. Unfortunately, so far although it has helped to take the edge off, I still have pain every single day. But, is there such a thing as NO PAIN AT ALL ever again? Sometimes I’m at a level 1 or 2 of pain, which is great, but still, it’s there…lingering. I am looking forward to switching this winter to something else, I am really seeking to have zero pain.

  • spanky
    11 months ago

    I guess I am one of the lucky ones with no hair loss, no nausea and the 8 tabs, 20mg/week has at least enabled me to tie my shoes and button my shirt which I could not do 4 months ago. I do have to take them Friday afternoon because I am extremely fatigued and have a brain haze for about 24 hours. I would rather fall asleep watching a Saturday football game rather than falling asleep at work. It has messed up my normally active weekends though, but at least my thumb pain is mild.
    My doctor is not as pleased as I am though. He says all hand pain and inflammation needs to stop to prevent bone damage. Is this true? He wants me to start infusions next month to supplement MXT with Simponi Aria. Anybody know anything about this stuff and should I follow the doctor’s direction?
    Thank you if can share any experience with this.

  • Monica Y. Sengupta moderator author
    10 months ago

    Oh wow, you just reminded me of how many tablets I used to take of the MTX and the ghost of nausea past just washed over me for a second, heh!

    I am glad you have not had any side effects with the MTX.

    We cannot provide medical advice over the internet (for your protection) but I can speak from experience that I needed the addition of a biologic to control my RA symptoms. I am on Orencia and it has worked for me, personally.

    I thought you might like this article on the Simponi medication: https://rheumatoidarthritis.net/treatment/simponi-reviews-how-well-it-works/

    I would love for other community members to share their experiences with Simponi so I think you should ask the question here: https://rheumatoidarthritis.net/q-and-a/

    This article is pretty specific and it might be harder for people to see the comment and answer.

    All the best, please reach out if you have any other questions! ~Monica

  • NPEOttawa
    11 months ago

    I have had very good luck with MTX. It took longer than I expected – 6 months maybe, but decreased my pain by half. Then I started Plaquenil, and my pain levels are 2 most days in most joints. I switched from pills to injections during that 6 months, and once experienced a lot of nausea and diarrhea for 2 days. An increase in Folic Acid from 1 to 5 mg, and from 3 to 6 days a week took care of that. (Folic acid is important!) I have some symptoms like poor sleep, and hot flashes, but I feel like I have my life back. It may not work for everyone, but it’s been very good for me.

  • Monica Y. Sengupta moderator author
    10 months ago

    That’s awesome, @npeottawa! I am glad the MTX works for you.

    It’s amazing how a supplement like folic acid can change the med game, right?

    I am so happy you’re feeling pretty good! All the best and I hope these meds continue to work for you! ~Monica

  • LifenowwithRD
    11 months ago

    My experience with MTX wasn’t good. I was on it for the better part of a year, along with Plaquinel. Not only did it not help my RA symptoms, it brought a host of other problems with it. I did the injectable from the start. If it was only hair loss, I could wear a wig. My kidneys started failing, my liver function numbers shot up (with almost zero alcohol use), I was either freezing or hot, and worst of all my mental health went south, and I mean way south. I’m a happy person normally, but I felt hopeless and depressed – maybe because I was tired but couldn’t get good sleep, and constantly nauseated even with the folic acid. When I started lying in bed planning my suicide, I knew I HAD to get off of this drug. It is toxic to my body all while not helping to control the RA. Since then I’ve been on Enbrel, and all the other DMARDS and thanks to horrible insurance decisions I can’t get what might help – Xeljanz, until I do more expensive Remicade infusions for 3 months. I’m glad the MTX helps so many, and I really wish it had helped me too, but my journey to find the magic bullet continues.

  • Monica Y. Sengupta moderator author
    11 months ago

    Hey @lifenowwithrd! Thank you so so much for sharing your story with me/us!

    I thankfully have not had any side effects like that. I knew that I should keep tabs on my mental health but I never noticed anything too out of the ordinary.

    I am glad you took control of your medicine regime and stopped the MTX. Sometimes, it’s best to listen to your body.

    I hope the Remicade works! And I hope you are able to switch to Xeljanz down the line.

    Thanks again for commenting! ~Monica

  • Lisaw
    11 months ago

    Hi, my story is almost identical to yours. Except this is my 3rd try on the MTX injections. Why?…..because I am such a baby! For some reason giving myself an injection freaks me out so I kept going back and forth between the pills and injection. This last time the pills made me so sick that I just couldn’t take it any longer and I am now determined to stick with the injection. I take folic acid and plaquenil also. Do you take Plaquenil?

  • Monica Y. Sengupta moderator author
    11 months ago

    Hey @lisaw!

    I am also a bit squemish with injections, especially if it’s someone else giving it to me! Heh
    I don’t know if this is helpful but when I give myself the injection I treat myself to something. Either taking a time-out to enjoy a TV show or buying a cup of coffee the next day!

    I do not take Plaquenil. Since the beginning my doctor did not want me on it. However, I do take the active form of Folic Acid (Leucovorin Calcium) because the FA did not work for me!

    Thanks again for commenting on my article!! ~Monica

  • ValerieNC
    11 months ago

    I have been on Methotrexate (weekly injection) plus folic acid for a year with no side effects. I refused steroids knowing the side effects are numerous. It probably took longer for the Methotrexate to bring relief but it was worth it. My daily pain level now is about 3 versus 8. I was told when I began the medication that the pill form can cause nausea. I’m glad I insisted on refusing the steroids.

  • Monica Y. Sengupta moderator author
    11 months ago

    Thanks for sharing, @valerienc! I am so glad that the MTX injections work for you! Are you on other medications as well?

    ~Monica

  • Monica Y. Sengupta moderator author
    10 months ago

    Thanks for responding, @valerienc!! I am sorry you had to go through this ordeal but I am glad it was resolved!!

    It’s true! At the beginning I knew the name but I didn’t know the dosage. I can handle once weekly injections but I have a small problem with needles so it took me a while to get over that! Heh

  • ValerieNC
    11 months ago

    Just lipitor plus multivitamin. Almost 2 years ago, I had a small tumor (benign) removed from my brain which caused an excess of cortisol in my system. The reason I mention this is that it’s similar to overdosing on steroids-hair loss, mood swings, rosacea, facial hair, diabetes, weight gain, extended abdomen, bruising, etc. All those (except hair loss) went away once my chemical imbalance was corrected. Because Methotrexate can cause hair loss, that was the only symptom not reversed. I probably had RA for some time but had no pain due to the excess cortisol in my system. My rheumatologist was rather insistent that I combine my medication with a steroid. As you can guess, I absolutely refused. I experienced extreme nausea and fatigue adjusting to the withdrawal from the excess cortisol so when my doctor told me that Methotrexate in pill form can cause nausea that’s all I needed to hear. I was a bit nervous giving myself an injection but it’s easy and only once a week. Knowing that it’s a chemo drug sounds scary but given the correct dosage which is so very small compared with a cancer treatment, it made my acceptance easy. It’s also a proven drug and has been around a long time. Hope you are as fortunate as I’ve been. Prior to this tumor and then the RA diagnosis, I’ve been fortunate with having good health. I also might add that I’m 71 so I consider myself lucky that I didn’t have to deal with RA when I was young and working. My heart goes out to you and hope that you find something that can bring you relief. Best of luck to you.

  • Piper888
    11 months ago

    Thank you for your experience on Methotrexate. I’m so new to RA but I was wondering with the pill form if you could crush it before taking it so it doesn’t sit in your stomach creating nausea? Anyone know?

  • Richard Faust moderator
    11 months ago

    Hi Piper888. I have seen several medication related sites mention that methotrexate tablets are not to be crushed or chewed. This is often the case with medications that are prescribed at specific time intervals. Your doctor should be able to provide more specifics. Please let us know if you have additional questions. Best, Richard (RheumatoidArthritis.net Team)

  • Art47
    11 months ago

    I have taken it on several occasions in between Arava and Levaquin and all other r/a meds.
    ,besides injections.metho.caused my toe nails to turn white and my urine to smell badly,I was taking it with 10mg prednisone. Was getting constapated all the time and had very little energy.It was not helping the inflammation. I have hadR/A since childhood for 54 years. I am glad that is working for you. God bless.

  • Monica Y. Sengupta moderator author
    11 months ago

    Thanks for sharing your experience, Art47!! I really appreciate it 🙂

    I hope you are on meds that are helping your RA! ~Monica

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