Unusual Methotrexate Side Effects | Rheumatoid Arthritis Warrior

Unusual Methotrexate Side Effects

Many patients take low enough doses of methotrexate that they don’t even have side effects…

But, some strange methotrexate side effects are for real

methotrexate pillsNo one ever told me methotrexate could have side effects. I’m not complaining! I think that worked for me. I didn’t approach the treatment with fear.

Don’t get me wrong – there was drama. But it was based on other things: Wean your baby. Swallow these pills for the rest of your life. Hope it helps you walk. Give up occasional beer and wine

Without any fears of methotrexate side effects, I didn’t set myself up for failure. I didn’t have to worry about whether the side effects were partially psychosomatic or not. I was more likely to talk myself out of side effects than into them. And more likely to give the treatment a chance to work.

What are some weird methotrexate side effects?

This is not about the common side effects like nausea and minor hair loss. There are some more odd side effects of methotrexate that have either been described to me or I’ve encountered myself. I have not had all these myself, but the ones that I did have were not until my dose reached the maximum amount for my body mass.

  • Metallic taste
  • Breast tenderness
  • Menstrual changes
  • Mood changes
  • Lower GI cramping
  • Brain fog
  • Rashes or blisters

Some methotrexate weird side effects probably aren’t

I don’t think that I’ve ever seen an Oxford Journal abstract titled Weird Methotrexate Side Effects, have you? But patients talk about it. There are plenty of places online where you can find some pretty extreme lists of side effects. Some are more realistic than others.

It can be difficult to isolate which medicine is responsible for which side effect. Often prednisone is to blame. But don’t rule out the Rheumatoid Arthritis itself. Going off of treatment when RA is flaring can make it obvious many problems are actually caused by the RA.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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115 thoughts on “Unusual Methotrexate Side Effects

  • March 28, 2016 at 11:32 am
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    Don’t know if MTX caused my RA-ILD (aka RA Lung), but it SURE didn’t help. If I was voting, I’d say the MTX had a huge hand in it. Like prednisone, it helps the symtoms, but the long tern effects make me wonder now….was it worth it.

    Reply
  • March 28, 2016 at 11:37 am
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    Dakota – I hate to be a Debbie-Downer, but I suspect MTX played a big role in my new diagnosis, Intersticial lung disease (aka RA Lung). My Rheumy wouldn’t “commit”, however, she immediately took me completely off the MTX when she diagnosed me. I’ve done a lot of reading and research, and I’m am pretty sure the MTX had a hand in it. I was on it for nearly 11 years. Like prednisone, its a double edged sword. It surely helped with the RA symptoms, but had I known then, what I know now, I might have refused it.

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  • April 25, 2017 at 11:23 am
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    I didn’t find out till 3 weeks ago that you shouldn’t consume grapefruit or grapefruit juice for 24 hours before and after taking methotrexate.
    Almost 8 years since my diagnosis and now I find it out.

    Reply
  • August 19, 2017 at 8:07 pm
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    I am suppose to methotrexate, however I feel horrible all the time, like I have the flu, so I stopped taking it, I do the Humia shots only, now but they just let me have enough movement that I know I have a lot of pain and lots of swelling, I now an taking prednisone, but need to take 5 – 15 mg a day to get any relieve, what is worst the methotrexate or prednisone for my long term health?

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  • September 25, 2017 at 9:57 pm
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    I’ve been taking MTX for a bit over two years. Most of my RA symptoms were in my hands. My doctor put me on hydroxychloroquin and wanted to start MTX, but I said no. When my second index finger mimicked the first and would not straighten out, I agreed to try the MTX. After 6 or 8 months my doctor said I was in remission. During the time when my fingers were crackling and not bending properly, he had me go to OT, and that was really helpful. I’ve been aware of this site for a long while, but have stayed away until now. My side effects to MTX certainly haven’t gotten better (I was on the largest dose–10 pills). I take a lot of folic acid and still have queasiness. I take a ginger capsule with each meal on my MTX day, along with a capsule of DGL licorice. It seems to help, but lately the nausea is still there. I asked my doc a couple of weeks ago if I could taper the MTX, and he said yes! but slowly. So now I’m down to 8 tabs. I will certainly try the green olives mentioned elsewhere on the site. MTX is definitely the drug I love to hate and hate to love.

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  • December 18, 2017 at 4:22 pm
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    Been on Methorexate 20 mg / week for 6 months plus. Definitely increased joint pain for 24-48 hours after taking it, then this disappears. But worst of all is the horrendous fatigue, which lasts 48-72 hours after taking it. Literally bed-ridden, then energy picks up (although not to normal levels) the last 3 days before having to dose again… This drug is a real struggle. It has helped my joint pain overall, but at what cost….?

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  • February 27, 2018 at 4:19 am
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    Anyone experience extreme bloating and stomach ache with MTX. I just finished my 4th week with MTX, since then I looked like 4months pregnant.

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  • July 23, 2018 at 6:14 pm
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    First dose MTX and bed ridden for 11 hours with severe pain. Glad seen this site to know not alone. Thanks for the other info

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  • February 26, 2020 at 8:19 pm
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    I was on 2.5mg 3 times a week for about 10 years. I also took folic acid and was doing great. No known side effects. Then in the summer of 2017, I started losing my balance. Trip going down stairs, trip going upstairs, couldn’t put on my pants without holding on to something. Then one day I was on a two step stool and as I was stepping down, I lost my balance and fell backwards resulting in a compression fracture in L2. After healing from that I told my Dr That there had to be something else going on. He asked me to stand on one leg and I couldn’t do it. He asked me to walk heel to toe. That too was a no go. After two MRI and a visit to a specialist it was determined that the methotrexate had dissolved some of the myelin in my brain. The specialist said it was a rare side effect, and that it probably would not regenerate. I was immediately taken off the methotrexate and three months later put on a different RA Med. I have had to learn how to compensate for my balance but all is good, life goes on.

    Reply
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