Side effects from methotrexate

[Janini10]

Hi everyone

I was diagnosed with rheumatoid arthritis and osteoarthritis a few months ago I am on 15mg methotrexate with side effects of headache, feeling sick and I am tired a lot , has anyone suffered with hair loss taking this medication , I am still having fortnightly blood tests and I have just had my app to see my nurse cancelled so not sure what my bloods are showing just yet. Thanks

[Mmrr]

First thing to say is that MTX works well for many people. But for many all the side effects you mention can be intolerable and long lasting. It is very individual.

Some people find injecting eases the nausea, headaches and so on others not. So if you are taking tablets it is worth asking about injections.

Has your rheumatologist prescribed folic acid to take ? It is usually 5mgs every day except MTX day, again some people find folic acid helps reduce side effects others not.

I found keeping well hydrated and eating lots of carbs helped reduce the nausea, but put on masses of weight and experienced a MTX hangover day the following day after taking it. I could do nothing for the fatigue and nausea other than lie on the couch.

As for the hair loss, it did settle after a few months of taking MTX and over a period of time the hair grew back. I think you may find many people report similar.

It might be worth chasing up your nurse appointment and explain your side effects. I hope you get some advice from your nurse soon.

[Janini10 in reply to Mmrr]

Hi, Thanks for your reply, yes I take folic acid every day apart from MTX day but I must say I have forgot on several days to take them.

I will be having my bloods again tomorrow then I will be ringing my app line to see what is happening as I feel like I have been given my medication then just left to it.

Hopefully my hair will get back to normal it seems to be thinning at the minute which is upsetting me but there are worse things.

I will mention my side effects when i hopefully get another app.

[Madmusiclover in reply to Janini10]

I felt awful on it. Not very precise. Just felt tearful and ill. You don’t have to suffer. Let them know how you are feeling.

[Janini10 in reply to Mmrr]

Hi Thanks for your reply yes I take folic acid daily apart from the day of my MTX I must admit I have missed a few now an again but I do usually remember them. I have got in touch with my nurse and she has advised me to take 3 in the morning and 3 on the evening for a couple of weeks then if I am still the same then they will look at giving me the injections.

I have just had a message to say I have a raised liver function test and to stop taking any anti inflammatories which I don’t take and to make sure I have my next blood test in 2 weeks.

[nomoreheels]

Hiya Janini10. These are more common side effects, especially early days, weeks & months. I take it as your body getting used to the MTX so they often ease the longer you take it. Until then you could try eating ginger for the nausea, I preferred stem ginger but any form could help, or peppermint for both can help ease that feeling. I started with peppermint tea way back when I first started MTX & still have it after my meal in the evening. Alternatively you could ask your GP if he/she will prescribed an antiemetic (anti sickness) & if otc pain relief isn't helping ask for something stronger. Remember to keep well hydrated around MTX day, it helps. It's a bit more difficult with the fatigue because that could also be the disease not being well controlled yet & rest is the best help, not always easy I know but do try.

I had some hair thinning when I first started MTX & I did have my folic acid increased. I have fine hair but a lot of it & only me & my hairdresser noticed if I'm honest but she gave me a new style that took less product & much less styling, that really helped not having to faff with it. It settled down, I suppose after 3 months or so, & it's actually grown back quite curly, so it needs little doing to it at all nowadays.

As I said all your side effects are common & related to the MTX reducing your folate levels, but they very often settle. When I was on tablets I took them throughout day with meals rather than in one dose, I'm sure that helped me. I've been injecting 12 years now & just have less appetite & am a little more tired the day after so just graze & take it easy & try to avoid doing anything strenuous. Maybe something you could discuss with your Rheumy in the future, many of us go on to injecting if we stay on MTX long term.

[Runrig01]

Hi I have taken MTX for around 5yrs now. I’m lucky in that I’ve never really had side effects, except fatigue if I took during the day. I take mine around 8pm after my evening meal and seem to sleep through the fatigue now. I’m now on 25mg and still tolerate tablets. Like nomoreheels I found my hair thinning, I also have lots of it so no one else notices, but it is difficult getting my hair to stay in style now. I always had a gentle wave but MTX seems to make my hair really curly. I’m sure if your bloods were out of range your team would have been in touch. Missing a few folic acid doses may havd increased the side effects. I use an app called pill reminder, to prompt me to take my meds. I have about 25 different meds, and it also prompts me to restock when levels are running low. Hopefully most of the side effects should ease as your body adjusts to it, I actually dread having to miss a dose as it is so good at keeping peripheral symptoms under control

[CagneysMum]

Hi I’ve been on methotrexate for just over 3 years since diagnosis for sero positive RA. Firstly tablets and then pre loaded pens when tablets weren’t enough to control it. I found less nausea on the pen system but still had significant hair loss. My rheumatologist suggested trying an over the counter supplement called biotin which really helped slow down my hair loss over 4-8 months. It’s now back to how it use to be much to the surprise of my hairdresser … she no longer has to come up with creative styling ideas to disguise my thinning hair. 👍 Remember that not everyone suffers these side effects though. Good luck. X

[oldtimer2]

If you use the search box I'm sure you will find loads of posts about methotrexate.But bear in mind that most people only post when they have problems, not when they are doing well on something.

Personally it didn't suit me, but many people find that the early problems settle down.

[ATSF]

Both me and my wife and a sister in law take it. I have had the opposite with faster hair growth but very fine, my wife as not lost hair but it as got very fine. My Sister in law the same who has taken it for over 40 year’s very fine hair but no loss.

[Adnil53]

Do you take a daily dose of folic acid , this helps with the side effects , I would ring your rheumatology nurse help line , for their advise , it’s early days of you starting it. But it’s worth letting them know how you are . Hope you pick up soon

Linda

[Flor1rence]

Hello, I have had MTX for 6 years now, half the time tablets now injections for nearly 3 years, I cope very well, folic acid has recently been increased so all good. Hair loss a little to start with but not now and my hair grows very quick!!!!😉I must admit I need a medal for not giving up and it keeps my immune disease under control, thank you MTX for allowing me to work full time 😂😂😂Tell your nurse how you are feeling, good luck🍀

[ashdieback]

I've been on MTX for nearly 20 years now. I too had thick but very fine hair, now it's thin! It was the amount of hair caught in the "sieve" in the plughole, when I washed my hair in the shower, that monitored the loss for me. The amount now is minimal, but the thickness never returned.

I asked the dermatologist about biotin in relation to my vertically splitting flaking ridged nails. She said she was reluctant to recommend it because it interfered with blood test results, so I've stayed clear........interesting that a rheumatologist advised taking it. What a quandary!

Re the fatigue, I'm inclined to agree that it's the RA. Hugely frustrating. I've had to learn to pace myself, I can't beat it. I've tried pushing through it, mind over matter and all that, to no avail. But everyone's different, that's just my experience. Good luck!

[Happy5]

Others have given great suggestions.I'll add first year is up and down, till the system settles to MTX .

As some have said it's possible MTX isn't for you.

I take an anti sickness about half hour before my MTX .

I'm on injection one weekly which helped reduce some of the nausea, as well as taking folic acid daily except MTX day.

Also take my MTX not long before bedtime to try to sleep through worse symptoms.

Have water by the bed to drink if you wake at night helps flush the negative side effects out.

Have to say I discount day after my MTX for similar reasons others have said.

All the best

[TMAblue]

I had similar problems with side effects for ages and a bit of slight hair loss. They changed me onto injection pens (done at home) and much better on those (No nausea/less problems).