Methotrexate Side Effects

Promised to do a follow-up to my First Dose post.  Possible methotrexate side effects, and my thoughts on them.  

(Edit to add:  nausea was a temporary side effect for me.  If you’re considering mtx, don’t let this scare you away. I felt awful the first week, still pretty bad the second week, but increasingly better after that.  Now I have no nausea at all.  This DMARD is the standard for RA because it works so well.  Most people don’t have a problem with it.)

mtx

I’m not too keen on this med, but am told it’s temporary.  I feel awful, and can’t even figure out how to make complete sentences.

Excuse the graphics, but right now, here’s how I feel about methotrexate.  (edit:  remember, this was temporary)

Without further ado, possible mtx side effects:

Anemia, low white blood cell count, and low platelet count.

I am concerned about this, but the doctor is ordering monthly lab work.  Any problems can be caught and addressed. My white cells and platelets have already taken a nose-dive over the past two years.  Because of this, I’m not sure that any further decline could rightly be attributed to the mtx.

Risk of infection.  Avoid people with infections, colds, or flu.

Is this even possible?  I don’t live in a plastic bubble.  I’ve had a sore throat for a few days, and two of my kids have been sick (as in, I need to shampoo the carpet).  My rheumy thought it would be okay to go ahead and start the mtx, so she must not be overly concerned about it.

Nausea or vomiting.  Small frequent meals, frequent mouth care, sucking hard, sugar-free candy, or chewing sugar-free gum may help.

See above picture.  The idea of taking the mtx at bedtime is so you sleep through the worst of the side effects.  Hate to think what I’d feel like otherwise.  I tried the gum trick.  It helped for a while.  I can’t chew gum all the time, though. 

Not hungry.

I’m okay with not being hungry, so this side effect isn’t really a problem.  I forced down enough food that I could take my meds.  With any luck I’ll even lose some weight in the next couple weeks.

Diarrhea.

This is the only side effect I remember my rheumy warning me about.  She said to make sure I’m near a bathroom for a couple days when I take this medicine.  Fortunately, it hasn’t been an issue.  Whew!

Mouth irritation.  Frequent mouth care with a soft toothbrush or cotton swabs and rinsing mouth may help.

Supposedly, mouth sores with mtx are from a folic acid deficiency.  Thus, the prescription for folic acid.  I already get mouth sores periodically, even without the mtx.

Headache.

Quite severe.  I finally thought to take some acetaminophen.  Weekly headaches could be a problem so I’m hoping this is temporary.

Hair loss.  Hair usually grows back when medicine is stopped.

I’m already losing my hair. What hasn’t fallen out is breaking, so I can’t imagine that mtx is going to make it any worse.  It’s just hair; I can get a wig if it gets too bad.

Liver damage can rarely occur.

Frequent LFTs will monitor this.  If there’s even a hint of a problem, it should be caught early.

Lung damage can rarely occur.

I don’t recall seeing anyone discuss this before.  Probably because it’s so rare.  I’m on a low dose, so doubt that there’s much chance of this being a problem.

Other forms of cancer can rarely occur later in life.

The risks are still pretty small.  And I wonder, how much later in life?  Given my crummy genes, it’s not likely that I’ll live to be 100.  I control the risk factors I can, and don’t worry about the rest.

What it really boils down to is that these potential side effects fall into three categories:

  • extremely rare
  • common, but temporary while adjusting to the medication
  • already happen even without the mtx

It will be interesting to look back at this list in a year and see if I still feel the same way.

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8 thoughts on “Methotrexate Side Effects

  1. My hair has certainly thinned since being on methotrexate, but I don’t think it’s noticeable. I just know that I used to have much thicker hair.

    I did have mouth sores for a while, but I don’t seem to get them now. I am on a higher dose of folic acid than I used to be, so that may be helping.

    Also, not everyone becomes extremely susceptible to infection. I seem to be pretty much the same as if I weren’t taking mtx. I hope you find the same.

    Anyway, I hope you find that the side effects you are experiencing are temporary. I know I’ve been lucky, but I do know others on methotrexate who have done equally well with it. It certainly sounds scary – probably a good thing I was too young to process all of that when I started it. Thinking about it now, it must have been hard for others to make the decision to start me on mtx and then watch me stop eating for 2 weeks. I’m glad they did, though.

    • I’ve responded so well to the other DMARDs that I expect to do well on this one, too. The adjustment period seems to be a little rough. Thank you for the encouragement; it’s good to hear positive stories.

  2. I feel for you. Today is my MTX day, and I feel just awful. I am lucky in that I don’t actually throw up, but I feel dizzy and lethargic and faintly nauseous and out-of-it ALL DAY LONG. I have such mental fog that I can’t focus on anything or make decisions, also. It’s simply a lost day. Some weeks it’s better than others – last week, I barely even noticed MTX day at all. This week, though… ugh.

    • Do you notice any pattern to the days that are better? Is it food related, or weather, or??? I was hoping that by taking my dose at bedtime, I’d miss the worst of the side effects. Hope you’re feeling better. (((hugs)))

  3. At times I’ve thought I found patterns, and I’m still looking for them. One consistent thing is that if I don’t drink enough water both before and after taking the MTX, I won’t do well. I have a decent handle on some things that are almost guaranteed to make it worse – dehydration, not resting enough, not eating enough, etc. But it’s harder to find surefire things that make it BETTER – sometimes I do really well, but the next time I may not do well even if I do (or don’t do) the same things.

    Thanks for the hugs! I hope you can find some patterns that make things better for you.

  4. Pingback: I’m suffering from DPS « Pollyanna Penguin’s RA Blog

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  6. Hi! I’ve followed your blog for a while but haven’t been around recently because I’ve switched to a new computer and started a job…so it’s taken me a while to get back. I just wanted to say I just started a low dose of mtx three weeks ago myself. Just what you said..I was very nautious the first few days, but every week it gets better. My doctor doubled my folic acid because I got a mouth sore, but that took care of it. I’ve been using a wide toothed comb after I wash my hair, and just generally being gentle with my hair and have so far been lucky with that side effect.

    Also luckily my ins. company decided to pay for enbrel a few weeks into the mtx. I take them on different days, and they both seem to be helping. Hoping that you feel O.K. on it. I’m also on pred. until the enbrel kicks in.

    Melissa

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