Methotrexate side wffects

[lovemydoggy]

For those of you who experienced side effects on methotrexate and were able to stay on it how long did it take for side effects to diminish? I’ve had 3 injections so far and feel horrible for 2 days after. The third day I get better, but still experience vertigo. I want to stick with it, but these side effects are pretty bad.

[Chezjay]

hi

I take these. I’ve been on them for just over a year as the pills used to make me feel really terrible.

I’d say side effects for me are a bubbly stomach, grogginess. Generally for 24hrs after the jab. And I find if I eat/drink a lot on injection day it’s more manageable.

I’d say I don’t feel as “sharp” if that makes sense.

When I messed up an injection one week i felt more “alive” and alert.

But saying that, in general I’m able to manage the side effects. And what are the alternatives….. additional joint damage and so on.

For me it’s the best of a bad bunch

Seeing the RA consultant in January for first time since April so will discuss and see what they say. I’m guessing a lot of people are experiencing what I am and are having to just get on with it.

Fingers crossed we are all as well as can be

Take care.

[Thingybob in reply to Chezjay]

I get the same, but its the lesser of 2 evils. Thought about changing but a new med may not work. Good luck xx

[Madmusiclover]

I never got on with methotrexate so can’t help but others will. I will just say other drugs are available if you can’t tolerate or it doesn’t work.

[purplecyclist]

I feel like I have a hangover for 24-48 hours. Drinking lots of water seems to be good. I also schedule things to do that are positive but not too demanding, otherwise I am liable to feel miserable. I think my coping strategies have improved and that has made the biggest difference. I've been on it for 1 year and no joint damage in the x rays so at least it seems worth it to me.

[Curcubeu]

At the beginning right after my diagnosis I was put on Methotrexate 25mg injectable and Sulfasalazine 500mg x2/day, dropped the Sulfasalazine after 2 months and stayed on Mtx 25 mg for about 8 months. Pretty similar odd beginnings like yours with about 5 days a week feeling in the twilight zone towards the end of those 8 months. But the benefits outweighed the hangover. I needed it to put my disease in remission. Towards my 8 months on Mtx 25mg I called my rheumi dr and explained i could not take it anymore. They looked at my bloods and combined with my improved symptoms reduced my dose to 15mg which I am on since and pretty well tolerated. Right after the change my body felt the adjustment as I started sort of aching again and made me think my decision was wrong, but rebalanced itself in about 2 weeks as I readjusted to the new dose. I actually made a good move by having the dose reduced. It is a trial and the journey is personal for everybody. I am functional since 👍 thanks God, with only very mild crisis and my disease remains in remission. DRINKING WATER throughout the week is THE SECRET for me helping to manage the side effects.

Sending hugs, stay strong!

Happy New Year!

[Tia53]

I've been on 10mg Methotrexate Metoject since Dec 2018. I take Folic Acid twice a week. I inject on a Tues just before I go to bed and drink a glass of water (last night)

I get side effects the next day - nausea, fatigue and fuzzy head.

However this is not every week. Today I'm fine. So I don't know why some weeks I get side effects and some I don't!

I'm used to it now after 6 years and it's a small price to pay as I've been in remission for several years and getting my Metoject reduced next month then coming off altogether for a trial period 😊

[Chezjay in reply to Tia53]

That’s great news.

Remission being no flares/pain?

I’m on 20mg injections. I think it’s managing things my side and would like to reduce the drugs too. Will see what they say next week

With remission though I’m assuming drugs still needed as I’m seropositive. Would be nice to not take anything for a while.

[Tia53 in reply to Chezjay]

I've had no flares or pain for almost 5 years. I'm coming off Methotrexate for a break / trial period to see how I get on. I realise I may have to go back on after a while but I'm willing to give it a try 😊

[lovemydoggy in reply to Tia53]

That’s great!

[smilelines in reply to Tia53]

Coming off of it all together for a trial period. Sodo they think that you are "fixed" and will stay well?

[Tia53 in reply to smilelines]

RA can never be "fixed" however I have a very mild case of RA and not had any flares or pain for nearly 5 years. So I'm willing to have a trial period off medication 😊

[smilelines in reply to Tia53]

You just never know! You might be in a life long remission. All the best!

[Tia53 in reply to smilelines]

Thank you 😊 That would be nice!

[Gramma3]

the side effects definitely improve after 6 weeks ish, changing to injections helps too when they increased my dose - nausea etc reduced. I also take folic acid every day except methotrexate day, this definitely helps.

I feel pretty rough for 4 days, nausea and tiredness. But as others say at least it stops or slows the joint damage. Plus other medications all have side effects.

Take care. x

[oldtimer2]

I really tried hard to tolerate methotrexate, but it really didn't like me - or my gut which became ulcerated and inflammed, as well as it affecting my brain function. I had tablets, then injections, but it was wonderful to stop it. I'm now on azathioprine which is cheap and works well for me apart from the nausea. There are other alternatives which can be tried too (listed on the treatment pages on the NRAS website).

[Mostmoses]

I was on methotrexate for about 10 months. I developed severe headaches on it and eventually was hospitalized with a spike migraine. Now on a biologic which seems much gentler in terms of side effects in my case. But we are all different; my rheumatologists complains that no one can ever have a textbook case of anything;-). Hopefully you'll be able to find what works for you soon!

[Jazzfizz]

hi I have +ccp RA. I have been taking methotrexate injections every week for 4 years with folic acid tablets once a day for the 6 days in between. The first 6 months I swung from vertigo to wavy lights to hair loss to weird sickly feelings and anxiety but after that my body became accustomed to the drug. I have hardly any RA symptoms and live a near normal life. I also try to live an active life which I think is the most important thing I do to help my RA. Hope this helps

[lovemydoggy in reply to Jazzfizz]

Wow that’s amazing. I’m glad it’s working so well for you and side effects diminished.

[MissusTee]

It took nearly 3 months for mine to stop. I can feel it working now.

[Calla2712]

I was on methotrexate for many years. I hated taking it as it made me feel quite nauseous for days, and I still got lots of flare ups. When I started biological treatment , the methotrexate was stopped, and the Etanercept that I was taking worked well for me for quite a while. Eventually I had to start taking methotrexate again with Etanercept as the flare ups started again. After a while the flare ups got really bad, so my consultant, who was a new consultant for me, upped my methotrexate dosage, and after two weeks I got really ill. I got pneumonitis, nearly died, was in hospital for two weeks on oxygen, and when I was discharged was put onto steroids until they could figure out what else to give me. The letter from the respiratory consultant said it was the methotrexate that caused this. It was a while before I had medication that actually worked for me, Ritixamab, my last infusion lasted me 2 years.

[lovemydoggy in reply to Calla2712]

So sorry you went through all that. RA is a beast.

[Jollyjill]

I take oral MTX & have never experienced any side effects.

[smilelines]

for me the side effects got worse and worse not better.

[Colaba]

Hello,

I cannot be much help. the only problem I really had was near the beginning when my doctor and I miscalculated withdrawal period from the Predisolone. Since then, in June 2021, I have bumbled along quite well, weakened but able to get about, walking with a stick, drive and travel. I can no longer start my chain saw , but there may be other influences at play; I am 85.

I have just returned from hospital, where I had become a danger, with an incurable virus the represented a threat to most of the damaged emergency intake, They interrupted the Methotrexate with a new supply of prednisolene (steroids) which has calmed the insufferable coughing.

No doubt I shall soon resume methotrexate, which has seemed to be working well for several years

I hop you overcome any such problems.

Happy New Year!

[lovemydoggy in reply to Colaba]

Glad to hear you’re through the virus! Thanks for sharing your experience. Happy New Year!

[Sprite60A]

I wasn’t on it long but it definitely takes two days out of every week. My sister has been on it for, I think she said, about 30 years and it still takes two days out of every week.

[lovemydoggy in reply to Sprite60A]

Seems to be pretty common to feel bad for a couple of days. I guess if that is what it takes to calm down these flares it isn’t such a bad trade off.

[WilfDog]

Hi lovemydoggy

I took the tablets rather than the injections and found the side effects subsided fairly quickly, but it took a while to find a dose that brought some relief. I mainly had some nausea. After a few years I had to come off it due to contracting neutropenia. Three injections aren't that many, although if the side effects are severe I would consult with your rheumatology team, but like others have said everyone is different so hang on in there. Methotrexate can be a successful treatment for many people. Good luck. I hope you turn a corner very soon. xx

[CoastalLiving]

Hi there ... I am on injection 6 (15mg) after not getting on with the tablets at all. I felt so terrible the first week (severe tunny ache, headaches, nausea amongst other things) I cried when I did the second injection.

Then followed 4 weeks of diarrhoea and I was ready to call and say there was no way I was continuing as am now constipated. I then received a letter to say I have an appt on the 21st of Jan so going to give it until then to discuss side effects properly.

Interesting to read what others say about feeling a 'hangover' for a couple of days - this describes it well it terms of what I am feeling now but it is more than two days. I definitely feel sad and don't sleep very well night of injection and night after .... up 10-12 times to go to the loo. I take the folic acid every day (yes I know it weakens the effect if taken on the day of) because side effects so horrible ... though having said that it has not been as bad as the pills for me.

When I struggled with the MXT pills my nurse said to me that by week 12 that is as good as you will get with side effects. I don't know how true that is but I figured if I can make it to 12 weeks then I will know if it is even working too. But like others have said there are other drugs and if you can't tolerate then you just need to advocate for yourself with you Rheumatology team to get something else.

Clearly we are all different and perhaps some of us more sensitive to drugs than others but really is worth sharing it all with your doctor and getting clear on what your options are.

Good luck and keep us posted!

[lovemydoggy]

I’m sorry you’re having such a time of it. I hope it resolves soon for you. I get what you mean about the “hangover” feeling lasting longer than 2 days. Fatigue is a major symptom for me, but the med hangover is a different feeling. Mine is lasting most of the week. I start to feel better on Thursday and pretty ok by Friday, which is injection day. I’m willing to deal with side effects and will see it through for several months unless something in my blood tests prohibit it. I’m really glad I chose the injection! My rheumy was going to prescribe the pills and I asked about injections. I think I dodged a bullet there.