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.)

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.

First Dose

The other day when my rheumatologist wrote me a new prescription, she printed out Methotrexate: Patient Drug Information from UpToDate. This is a site that Doctor D mentioned  a couple weeks ago, and now my rheumy gives me info from there.  Cool.

The insert that the pharmacy gave me mentions that methotrexate can cause dizziness and tiredness.  This I can confirm.  The pharmacy insert also says to contact the doctor immediately if this medicine makes your urine dark.  I’m already taking  prescription cheetohs sulfasalazine; not sure I’d notice more color changes!

A once-a-week med is weird.  From what I’ve heard, most people tolerate methotrexate pretty well; I hope to be so lucky.  But, on the off-chance that I get hit with the bad side effects, I don’t want my weekends ruined.  That means Saturday and Sunday are out.  Since we like to occasionally take off for three-day-weekends, Friday and Monday are out, too.  I have a regular Thursday commitment.  That eliminates a large portion of the week!

In addition to picking a day, I had to decide on a time.  I’ve read that by taking methotrexate at bedtime, you’re likely to sleep through the majority of  unpleasant side effects.  That works for me.

According to quite a few people at Arthritis Foundation’s RA Connect forum, methotrexate in pill form can be hard on the stomach.  I’d be okay with injections, but pills seem easier.  There is a possible solution, though.  Splitting the dose can help alleviate this problem (half the pills in the morning and half in the evening).  I’ll take all the tips I can find – but will run things past my doctor before implementing them.

When I asked my rheumy about splitting the dose, she was surprised that I already knew anything about it (she’s a new doctor to me this past spring; in time she won’t be surprised that I do my homework).   She does not recommend splitting the dose because that’s harder on the liver than taking the mtx all at once.  I’m so glad I asked, because I’d like to keep my liver functioning as well as possible!

Anyhow, I picked bedtime instead of morning, and Tuesday instead of Wednesday.  Which means my first dose was last night.

Another tip I’d picked up is that it can be helpful to carb-load before taking methotrexate.  In the interest of extra carbs, we had pancakes and applesauce for supper (yes, I’m still canning applesauce).  That was a big hit with my younger kids.  Next week we’ll probably have spaghetti.

Methotrexate is supposed to be taken on an empty stomach (another tip that I’d never seen mentioned anywhere).  Three hours after our meal, I took my mtx and settled down with a Sudoku book.  Tired, dizzy.  So much for anything that required my brain to function.  I’ve been working difficult puzzles, and last night couldn’t even solve an easy one.  Next week I’ll wait an extra hour and just take the pills as I crawl into bed.

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