23 Things People Wish They Knew Before Starting Methotrexate

Editor’s note: This piece is based on the experience of individuals. Please see a doctor before starting or stopping a medication.

Methotrexate (MTX) is a chemotherapy agent (when used in higher doses) and immunosuppressant drug that interferes with the growth of certain types of cells. It is often used to treat several types of cancer (such as breast, skin, head, neck or lung) as well as various illnesses, including psoriasis and rheumatoid arthritis. While some experience positive results, others are surprised by the side effects – both physical and mental – that can accompany the medication.

Although everyone is different and it’s hard to predict exactly how a drug will affect you individually, it can be helpful to be aware of all the potential side effects before starting a new treatment. So, we asked our Mighty community to share what they wish they knew before starting methotrexate.

Here’s what the community told us:

1. “Even the smallest dose can still give you the stereotypical chemo symptoms. I thought for sure on 1/16 of a dose I would have no problem, but I could tell the time and day just by how I was feeling at the moment. I didn’t realize it would make me so brain-fogged that I would need to warn my employers or workers to let me know of I started acting or speaking strangely.”

2. “I knew the potential for nausea but it didn’t make it any better! Between that, the upset stomach and fatigue, it made it hard to start my mornings.”

3. “The possibility of mouth sores from the pills. They were so incredibly painful! Now I’m on injections and handling them well.”

4. “Not everyone has bad side effects. You only see posts from people who have bad side effects, but many, like me, tolerate it very well.”

5. “My biggest complaint is that I wasn’t told until I started how long I would have to take high doses of prednisone with methotrexate and how this would create an enormous roller coaster of extreme emotions, as well as extremes with eating and sleeping… As much hell as I went through with the side effects, I still am grateful for methotrexate because it saved my life.”

6. “I wouldn’t be able to drink alcohol at all, not even on special occasions.”

7. “Side effects can last long after you get off of the medication.”

8. “That there was an injectable form! I took it for two years orally and spent one or two days a week nauseous and throwing up. I saw a new rheumatologist who immediately said, ‘Why aren’t you injecting instead?’ I switched to injections and haven’t thrown up from a dose since!”

9. “That it would make me feel hungover for two days after, but without the fun of a night on the town.”

10. “What I wish I knew before is that every time I need dental work I need to get special instructions from my rheumatologist on whether to adjust my dose and a medical clearance from my PCP for any kind of procedure, even something as simple as a periodontal cleaning.”

11. “That I would be flat-out exhausted the next day and my skin would become extra sensitive.”

12. “I was surprised how the color yellow is now ruined for me! To this day, anything yellow makes my stomach turn. Yellow highlighters are completely out of the picture.”

13. “You have to take folic acid to counter some of the negative side effects. Some doctors and pharmacists said I could take it every day of the week including the day I took methotrexate, while others said to skip the day I take it.”

14. “I became so immune-suppressed that I kept getting pneumonia, pleurisy, viruses/infections, etc. that I could not fight off for weeks, and sometimes months.”

15. “Methotrexate completely destroyed my eyesight. I need new tests and new glasses every six months, which is costly.”

16. “I was never prepared for people to tell me, ‘It’s not chemo – get over it.’ I hardly talked about it and am still afraid to…but the truth is even with all the pain it helps my rheumatoid disease and saves my life.”

17. “I wouldn’t change what I knew. Even though it hasn’t been very effective and I’ve had to go right up to the max dose then still end up having to change to the injectable version – which has so far only helped a little bit – I’m still hopeful it will help. And maybe I’ll even be able to reduce my prednisone.”

18. “I wish I was told I could have mental side effects as well as physical ones. When it didn’t work for me, it messed with my body and my head. I had severe depression while I was on it.”

19. “The weakness, headache, hair loss, dry/brittle hair, forgetfulness, confusion, exhaustion, feeling like every bone in my body is being broken in multiple places at once… I was totally unprepared for the abundance of side effects.”

20. “That I would get chemical UTIs constantly! Didn’t even know there was such a thing until I got them.”

21. “That all the bad side effects I was preparing for actually never occurred to me. I’d only feel totally worn out the day after but then feel good for five or six days.”

22. “I wish I’d have known earlier that MTX can be injected with short, thin insulin needles instead of thicker, painful, bruise-causing needles.”

23. “That the exhaustion I face on a daily basis – which I thought could not get worse – can in fact get worse with the help of this drug. But it does start getting better the longer you take it.”