My rheumy prescribed methotrexate last summer. I decided not to start while my children were at home for summer holidays as was worried about feeling sick...and being grumpy. Then I put it off because of Covid, then because I thought it would be sensible to have vaccine first...and now as am about to have second vaccine I have told GP that I will start it 2 weeks later. I don’t know why I just don’t want to start, or what I’m worried about. Perhaps it’s going down a path of no return. I’m also definitely worried about the side effects. I am no longer on pred, and have reduced hydroxy to 200mg, but I do feel rubbish quite a lot. Please can anyone explain how methotrexate has helped them, and also what side effects it caused. Do you take folic acid every day or just 5mg one day? Has it made you lose more hair than is normal for you? Do you more sick or tired than usual? Have you had to completely stop drinking?
Thank you in advance. 😊
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puffyface
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Hi, I started methotrexate earlier this year, presently taking 15mg, also take 400mg of hydroxychloroquine. Initially I felt a bit yuck the following day after taking them with loose stools lasting a couple of days longer, this only lasted about a month. After a few weeks I did start to notice a difference but if I'm honest I'm now feeling the exact way I was prior to taking them...... fatigued, painful joints, hair loss, swelling, generally feeling under par. I don't know if it's coincidence or not but I started feeling like this after my second vaccine which I had about three weeks ago, I think?? I don't drink much alcohol but I will if I want and there's been no issues noted. I hope this helps slightly. Oh you take folic acid 5mg 6 days a week, not on the day you take your methotrexate
Poor you! I hope you’re going to see a doc soon and maybe they’ll add something. My eyes have got real bad this year, so am worried about hydroxy too. I think I don’t like meds...but I absolutely know we need them and most on here a lot more than me. Thank you for your reply. I have only been given folic acid 5mg for the day after...not for 6...I wonder why. I really hope you have a good day today.
I really don't know why, maybe different health boards work differently? I would ask about it tho. I'm seeing the rheumatologist in May so will speak to him. It took me a long while to eventually accept to take the mxt and I also asked for a reduction in hydroxychloroquine, just got the I don't think so face. So I can understand where you're coming from with the reluctance to take them but unfortunately we do need the help, I'm just not too sure that it's making a difference with me. Time will tell. Have a good day too and stay safe
Hi there - I am one of those who reacts to meds usually - but not methotrexate! It's worked for me in many ways so I'd give it a try if you can bare to. You take the folic acid on the days you don't take the metho. That's it. Simples. Hope that helps... obviously that's just my experience and some might not get on with it. It can make your white blood cells go down as it's an... immunosuppressant. So you have to have regular two weekly blood tests at first, then monthly, then 3 monthly... just to keep an eye on your liver and WBC's etc... Hope that helps... it's worth taking it I say.. couldn't be without it now! x
Oh andI was given folic acid for once a week at first too... but my mouth and tongue got much worse so rheumy put me on 6 days a week... which helped (along with stopping working! ;).
Thank you! I am going to give it a go. It's pathetic really. With all the pain meds, you'd think we'd be used to medicine. I have hashi's too and had a really bad reaction to levothyroxine...I think that's where the fear comes from. I swelled up like a balloon and felt dreadful until some kind doctor gave me a different form of hormone. I think I might also question the folic acid every day. Do you take a lower dose every day than you would if you were just taking it once a week?
No just the same for 6 days.. just not on metho day (or any Vit B complex as I was inadvertently for a while.. blush.. as it has folic acid in it but a v mild amount compared to the prescription amount). Folic Acid just dumbs down the metho effect apparently so if you forgot and took both one day it won't make anything bad happen, so not to worry. I'd give it a go as I've been allergic to hydroxy Q, tamoxifen, an array of penicillins, iodine (in ct scan), morphine... oral and injection.. and depo injection steroids. So if I'm ok with metho, I truly hope you are. Fingers etc crossed for you - and that it works well. x
Thank you so much! Yes...amatrip...even at a tiny dose made me like zombie. It's awful isn't it....and yet it helped massively with the neuropathy in my feet.
I took Methotrexate for many years. I always felt a vague feeling of nausea and tiredness but it would go away after a few days. To be completely honest I did not like it at all but there are so many things about these AI diseases that just stink and medications are one of them. Some people have very few side effects from Methotrexate and tolerate it well. It can be a lifesaver and you really don’t know until you start.
I very happily stopped medications for a couple of years when I went into “remission” and felt great however on the inside my body was still creating chaos and I now have CNS lupus, APS, Raynauds etc. My overall point is that it’s important to know the side effects and tips to a better experience but I would encourage you to move forward if this is what is being recommended as the damage can be unseen and once there, can be devastating. Mycophenolate, Rituximab now for me when I thought I was doing so well.
Just my two cents from a 30 year AI roller coaster ride.
Thank you. They offered me azathioprine, mycophenolate or methotrexate....I can't remember why we decided on the later. Anyway, I will give it a proper go because as you say, the damage can be unseen. Do you know whether these drugs help with different things? Why one, rather than another?
My understanding is that they are all immunosuppressive although I only took Azathioprine for a very limited time. I used Methotrexate for RA and joints. I moved to hydroxycloriquine and added mycophenolate/Rituximab for Lupus and the CNS.
Truly I don’t know why one is offered over another but I think Methotrexate would be the first step where the others go to a higher level. It’s hard to say because in the US it’s also about insurance and proving you’ve tried other things before moving to stronger or more expensive meds.
I have found that if you don’t tolerate something well or it is not controlling the disease then they will move to something else
HiI have been taking methotrexate for a month now and I was the same, really worried about starting. I held off to have my second vaccine. I take my dose on a Sunday evening just before bed and initially I felt tired but other than that I have been fine.
Oh thank you for your reply. I’m so glad you’re feeling fine. It’s a big deal to put things into our bodies...and trust. Good luck with it all, and thank you for taking the time to help me with it all. X
first, it's odd that your rheumatologist reduced hydroxy and no prednisone at all, that's usually the first line of therapy and only if that doesn't work (the full hydroxy dosage) do they recommend immunosuppressants. second, taking methotraxate is not a path of no return, you can stop it anytime you want if you dont' like it. I started on a very small dose because, like you I was worried about any side effects, and i didn't have any side effects with it. i took 1mg every day of folic acid too, and not on the day i was taking methotrexate. and yes, you can't take alcohol with it is my understanding from what my rheumatologist told me. having said that, I stopped taking it after about 6 months as I didn't feel it is doing anything good.
Also, my rheumathologist told me to stop methotrexate 2 weeks before taking covid vaccine. This is when i stopped completely and didn't go back on it.
Hi I inject 15mg methotrexate at the moment and take folic acid every day apart from on injection day. I started with tablets and folic acid once the day after. I was told methotrexate reduces your natural folic acid so you take folic acid to replace it but the day after because it will stop the methotrexate working. My folic acid was increased to eventually 6 days a week to try and help with side effects . So I guess that is why some people take it more than others. As for the methotrexate, I takes a while to get used to and it works differently for everyone but I recommend giving it a go. My advice with the tablets, have a nice dinner so your stomach is lined and take the tablets before bed. The tablets did make me feel a bit tired and sick the next day so pick a day to take them when you can rest the next day if you can. I didn't get on with the tablets but lots of people tolerate them. I switched to injections and I still feel tired and queasy the next day but some people get on better with it. It is worth a go because it has certainly improved my symptoms joints fatigue etc. As for drinking I was told the recommended weekly limit is ok but I don't drink often anyway. I wouldn't drink on methotrexate day though but that is just my thinking. My hair has not been affected. I wish you all the best and this forum is always here for support.
I have been taking methotrexate for about 12 years now and I swear by it. I have been lucky in that I never had any side effects. Prior to metho I was on hydroxy and it did no good at all, since I've been on metho my Lupus has been very well controlled. I know it's different for everyone - as are all aspects of Lupus, but I am very grateful to the consultant who initially prescribed it ! I have blood tests every 2 months at my GP's surgery so I am closely monitored. I take folic acid every day except the day I take the metho. Good luck ! If & when you do go for it I hope it works as well for you as it has for me.
I understand yr reluctance to taking methotrexate. I was the same. I am very seriously allergic to many meds. Can’t take hydroxy. The methotrexate dosage is usually balanced with steroids. I’ve taken both for 3 years and wouldn’t be without them. Currently reducing steroids to 4mg daily but on 15mg methotrexate once a week. 5mg of folic daily except on methotrexate day. I panicked when the methotrexate leaflet said used for skin cancer. Folic acid really helps the hair issue, which in my case was nothing to do with methotrexate it was the illness before I was even taking it! In the have in the past had very serious skin issues from lupus and have been in the burns unit as an inpatient for several weeks. The methotrexate is great for skin maintenance. My skin is now fab in comparison. You will have very regular blood tests. It’s takes a few doses to build up and to kick in . I do not feel sick after taking it and although reluctant at first now would not be without it. For various reasons in 3 years I have gone from being in itu on deaths door to cycling 3 times a week and now feeling the best I have felt in 10 years. Sometimes you have to try it, see how it goes and weigh up the features and benefits. Hope that helps and encourage you. Best wishes
It’s been a number of years since I took methotrexate, I didn’t find any side effects until I was drinking alcohol. Too much alcohol and I’d feel very drunk and sickly. My daughter was a toddler at the time and the drug didn’t impair my parenting at all.
I learned that having spirits instead of wine I was less sickly. But the drug did its job for a time and then like all my lupus drugs, I had to change drugs to keep my lupus flare ups low.
Why are you taking folic acid ? Vit D is a must with Lupus as no sun.I had no side effects from Methotrexate but didn’t feel any better either so I stopped. A friend with RA thought it was great but after some years her skin started to peel. I take none of them would rather have a glass of wine. After years most learn the signs of flare ups and know how much rest they need, for me it’s sleep
It’s so long ago but I do remember taking it, was it because Methotrexate thins your bones or some other wonderful reason to make sure it’s worth it and you feel better on it
It is not a path of no return. You start and if it doesn't work for you in whatever way, you stop. Best to cut right down on drinking. Even so, it wasn't great for me - I was working in a demanding job and felt dreadful most of the time. Lost a day and a night every time I took it. Folic acid one day or 7 days made no difference. HOWEVER - I know this works for lots of people. Feeling better is a huge thing - I hope you try and it works, and you don't look back. But since they call this the 'gold standard' it's as if you have to go through this even if it doesn't work for you, to get to another drug. Or am I being too harsh (question for other veterans of MTX)?
Hello! I take 15mg mxt a week and 5mg folina the day after. The day after mxt i feel tired and sick I cannot studi or work and i do all what I loke to feel better. But i had a remissione after a couple of months. I do blood esame every 3 month. I hope it is a gpod therapy for you!
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