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Stopping MTX!!! Relieved and worried...

Hi! Few months ago i complained on here about the side effects of methotrexate and my rheumy that didnt want me to stop taking it. Turns out that she apparently didn’t understand the seriousness of the problem and how it was badly afffecting me... so she took me off of it. It was weird, kinda too easy...? Anyway now i’m worried, i dont wanna flare up, even tho it’s been two years since i’m in remission but i’m terrified of a flare up. Fyi i take humira, so i’m not completely uncovered. Do you have any experiences with stopping mtx while on humira? I would love to read what you’ve been through after stopping methotrexate because i’m really wondering if i took the right decision... thank you! (I’m sorry for any mistakes, english is not my first language.)

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Hi sarayar, know nothing about humira but totally get what you mean about stopping drugs, starting new ones and worries about side effects or flares. I'm not a fan of methotrexate as it makes me feel sick for 2 days, have reduced dosage and waiting for something else to be added. However now started getting more joint flares and waves of nausea fatigue later in week so thinking is this RD itself or not enough mtx? It's all a bit of a roller coaster and trial and error trying to kerp balance between side effects n disease. I suppose all you can do is try it and see; you could always go back on it later. Good luck and hope you manage without it; it's not a nice drug.

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It’s really not a nice drug, it changed me as a person... and i’m only 18 years old. It wasn’t worth it. I still think i made the right decision. Just hoping everything will remain the same as it is now. I’ve never felt so good and strong with my body!

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I know what you mean: makes you feel really low all the time. That's rubbish having this at 18, poor you. Really hope your new regime works without it x

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Sorry internet down for a while, but wanted to follow up. Yes, it is scary but we are both taking back some control from our RA. You are being pro-active about your treatment. Just keep talking to friends and family, your nurse, and sharing with this great community. There is a wealth of support, information and personal experience.

When I first researched being on Humira and coming off MTX I got one personal experience in response. Now there are many, as treatment develops and evolves. As I said my health trust were very agreeable and supportive and will even support patients to extend the dosage time of their Humira from the usual 2 weeks to 3 weeks. Their ethos is to find the balance that is the very best for each individual patient.

I have made the right decision for me.

I hope you continue to feel good and strong.

All the very best x

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Hi Saraya. I'm 65 and have had RA since I was 38 and various doctors have wanted to put me on methotrexate over the years. 20 years ago I taught a doctor from Egypt and he said he wouldn't put his mother or sister on that medicine as it was so toxic. I've had remissions and my last one was for 12 years! So I hope you get a good remission too. Eat healthily, not much red meat, do yoga and try not to get overtired. Of course all medicines have side effects and I'm sure diclofenac which I'm on is also toxic.

Good luck and by the way your English is very good. In fact it's much better than many native speakers!

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I’m so happy for your remissions! x

Luckily i’m vegan so red meat and dairy (i read these two foods are triggers in RA) aren’t a problem. I try to have a good lifestyle too, i’m 18 years old and i’m ironically the most healthy person in my group of friends! Haha

It would be nice if things would stay like this for a long period of time. Fingers crossed!

(Also i’m relieved my english isn’t bad... thank you!!)

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You're English is super! Sorry though that you are so young to have RA. Your life style will help you a lot . I found reflexology once a month really helped me and Floradix herbal iron tonic when I feel exhausted or anaemic. You can buy it from Boots. I'm always singing its praises.

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Thank you for you suggestions!

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I requested to come off MTX. My previous health trust refused just saying it was the combination of drugs I was on am also on Humira. We moved and I asked New trust if I could come off. They were only to happy for me to try. Have been off MTX for 10 months now and celebrate every day I am not taking MTX and wished I had pushed harder to get off it. Have had no adverse effects. It has not been a backward step for me. Everyone's different but has been great for me. MTX turned me in to someone I did not recognise and I believe coming off it saved my marriage. There are emotional and behavioural side effects as well as physical ones. I was on it for 6 years. I wish you the very best and hope that you like me continue to feel the benefits. Try not to stress as I have found this is one of the worse things for my RA.

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That’s exactly what happened to me, i had really bad side effects on an emotional level... when the injection day was around, you couldn’t talk to me the days before because i was unbereable. I’m only 18 years old, it was really hard for me to have a social life, i also struggle with depression and anxiety so that wasn’t helping at all. You’re also right about stress! I hope taking humira alone will work just as well. Thank you for your answer! x

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I take 7.5 mg methotrexate and entanercept. I Stopped the methotrexate about 3 years ago but started to get symptoms after about 4 weeks so went back to the 7.5mg.

This does does not case any problems. However, in the early days when I was on 17.5 mg. I felt sick and ill the day after taking this amount.

Perhaps you will mange without. If not you could ask for a small dose and try that.

It seems everybody is different and you need to find what suits best.

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That’s true, but i’ve been in remission for a long time so i just hope everything will be ok! I also changed my lifestyle A LOT since my first and only flare up... i think that affect it a lot. But you’re right, everybody is different!

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Hiya Sara. You'll not like my answer because my RD came back with a vengeance. That said at the time it was my only DMARD but because of issues when I returned back to the UK from living in Spain I had a hiatus of 3 months off all my meds but it was after 3 weeks without it things started really going downhill. Now, you have Humira at least but if the MTX helps the Humira to work better (which it obviously does if you've been in remission) you'll find it's not as severe as my response to no MTX but you may find symptoms starting to creep in around a similar time 3 to 4 weeks following your last dose.

I take it your nurse suggested trying injections, or maybe you were on injections I don't know but most people find they tolerate it better administering it that way, you can often go down a few mg's too as it goes straight into the bloodstream not through the digestive system like tablets. Obviously some people just don't get on with it at all however it's taken but also increasing your folic acid also helps ease side effects, I inject & take 5mg 6 days a week, just not MTX day & have no side effects of note.

Did your nurse not suggest another DMARD to replace it? I know others on anti-TNF's/biologics take a different DMARD concomitantly to help them to work.

I hope you find a solution, maybe a talk with your nurse would be appropriate before your symptoms get too much to cope with, if anything else is to be added remember it'll take anything up to (or over) 12 weeks to be effective.

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I tried to ask for another drug but my rheumy told me there isn’t another one as a substitute? I don’t know why... maybe in italy it works differently? So currently i’m gonna stay on humira alone. I hope i won’t get symptoms.

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Also i already injected the medicine... i made the switch from pills to injections because i couldn’t take the pills down anymore and they caused me so many bad stomach cramps! The more further i’d go, the more side effects i would feel. It was getting worse month after month.

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Hi, I am from Holland. I stopped Mtx, and combines Humira with Sulfasalazine (4 tablets of 500 Mg) and 15 Mg prednisolon.

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I was on methotrexate for about a year, and I hurt worse and had more symptoms than before or after I used it. I have a lot of pain, especially on the right side of my body, but at this time, am only taking hydroxychliroquine, 200 mg. I need help with my pain!

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I actually didn’t have any symptoms and it didnt make them worse, i’m in remission! Luckily i’m still not experiencing any symptoms since i stopped taking mtx... fingers crossed. Did you try taking prednisone? I know it’s like the “Devil” but sometimes it helps reducing inflammation while you figure out what medication is right for you at the moment. I really hope everything is gonna be fine for you, i’m so sorry to hear that you’re not doing well.

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Thank you, Sarayar! I have never been prescri ed prednisone. I am going to start being more insistent on my meds and testing. Have you tried CBD oil yet?

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No, i haven’t! Have you ever tried it? Do you recommend it? I’ve heard some really different opinions about it, don’t know what to think.

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Hi Sarayar,

I have been on methotrexate and had no side effects at all. At first nausea but no emotional problems only a huge improvement in my RA. To me it was a wonder drug but yes the listed side effects are just awful..... luckily i have not experienced any of them.

Before i took MTX my knees were collapsing and my hands were too painful to drive. However i have never achieved complete wellness. I have been taking prednisone for gout and my GP was very concerned as long term use causes brittle bones and many side effects that affect the whole body. Prednisone certainly gets rid of inflammation fast but the side effects i think outweigh the benefits. (it can cause diabetes eg) Thats just my opinion (as an exnurse as well). all the best ... Rosie

ps

I have a close friend who is an exnurse and when she was diagnosed with auto immune arthritis and recommended Methotrexate she refused to go on it. She went for acupuncture instead. But perhaps her illness wasnt as acute.

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