Anyone else find no side effects - positive or negative - with Methotrexate?

I started MTX January 2012, didn't experience any of the usual problems with it, but my symptoms only worsened over the course of 8 months until I started Humira, which did give me some relief. But I hate taking these "poison pills" as I call them. I think that because I haven't experienced any of the negative side effects, my rheumy feels like the drug is benign, but I don't believe that. Has anyone been greenlighted to quit MTX cold turkey? After 27 months I wonder if the MTX has done any lasting damage...

30 Replies

  • I'd talk to your rheumy about how you feel about the drugs, and see if he/she has can explain more about why this is a good combination for you or if there's a possibility that you can reduce? They don't usually give such strong drugs for more than 6 months if they don't think it's doing any good. After all, you don't know how bad your RA would have got if you hadn't been taking MTX? It obviously wasn't doing enough for you, but maybe it did have some effect. And generally it seems that using MTX alongside a biologic does help you tolerate the biologic, so it does seem most people are given both together. It's no fun taking these drugs I agree - but the alternative to me is a whole lot worse!

  • My old rheumy retired as I was feeling on top of the world and I've only seen my new one twice, so we are still in the "getting to know you" stage. What I am wondering is if tolerating a drug (that appears to do no benefit), is reason enough to continue to take it. When I started MTX, I thought my life was bad, and every single day before I started the Humira, I discovered that my life could - and did - get worse. I can't imagine if the MTX was working where I would have been without it.

  • Well I guess the best think to do is ask...? Some people just do do things anyway, but I tend to think that best to do stuff having talked to the rheumy first as you do need them on your side. I'm on 3 DMARDs, not biologics, but a while ago I got to feel that I was just taking too many drugs and was in a pretty good place in terms of RA. So I talked to my rheumy and she was ok about me trying to drop doses. To cut long story short, it didn't work so am now back on full doses. But to give her credit at least my rheumy didn't say I told you so!

  • That is really great! Sometimes it feels they are so quick with the prescription pads. I suppose I would feel better if what I was on was working :) I know we're all individuals, but there seems to be too much guessing with this disease. I guess I am finally being forced to learn patience!

  • Mtx isn't benign but it kept me on my feet for about 8-10 years. I had to stop it because of liver damage (well spotted because of the monitoring). I would go back on it if they said I could. Since I stopped, OA in my knees has got worse, I am very tired and have hardly left the house for the past four months. It really kept me afloat and although I hated taking the yellow pills, it did give me my life back!

    The combination of mtx + anti-tnf is well tried and tested.

    Now I'm starting a new anti-tnf.

  • Thank you for your reply. Good luck to you!

  • I'm not sure whether you are considering quitting mtx against your consultant's advice, if so, I guess that would be up to you but I've heard that mtx can enhance the effectiveness of biologics. I don't think there's really such a thing as 'cold turkey' with this drug as it's not addictive and I don't think it stays in the body very long - I've not heard of anyone tapering off, for example. My rheumy told me to stop after nearly two years as it wasn't doing anything for me. So I stopped & started Leflunomide instead.

    Personally I tolerated Mtx very well. I don't like taking any drugs but the damage, including lasting damage that inflammatory arthritis can potentially do justifies the strong medication to my mind. Uncontrolled inflammation is very bad news physically. I think it's sensible to live as healthy a life as possible to offset the impact of the drugs and many people feel quite well in themselves once the disease is under control. I fear the disease, not the drugs.

  • Thank you! I actually started tapering my MTX with my last rheumy when I was feeling really good. I got down to just 2 pills 1x/week - which felt great, as I wanted to be off them. It's possible that my current flare began because of the low dose of MTX, but now I'm back up to 8 pills, with no improvement. I know lots of people go off MTX because of bad side effects, but do any go off it just because it's not working?

  • You don't say when you went back up to 8 pills, but it can take up to 12 weeks for it to kick in. Conversely, when I had an enforced 3 month break from it I reverted to how I was before diagnosis. Maybe the MTX has been working but you've not yet felt the benefit. You say that your dose was reduced because you were feeling really good, that would indicate that the two were working well together. If it is only recently you've upped your dose it maybe just needs a little time to get back into you system. Alternatively, maybe you can speak with your point of contact, it could be a that different DMARD would work better for you if you have given MTX time. In the early days I tried several before we got the result we were after. Hope you get some relief soon whatever you decide.

  • Yep, I was taken off it because it wasn't working. However, that is 'working' in the context of trying to get better for 2 years and only getting some improvement i.e. it was not working enough. I'm now on Leflunomide as a last attempt to find a DMARD that helps more before starting biologics. I tell you, I love Mtx now! I was much better on it than on Leflunomide and would happily take it alongside a biologic.

  • Why don't you like the Leflunomide? My Rheumy has given me a prescription for that, but I haven't switched from the MTX yet.

  • Just a thought - is it possible your Rheumy has given you Leflunomide to take in combination with the MTX? The combination can be more effective than MTX alone & was wondering as you said you've had no improvement. I don't want to assume others are the same as me but I don't always take everything in when I see my Consultant (I take my husband, he doesn't have brain fog!). Hope you don't take this the wrong way.

    If you are unsure at all I'd give your Rheumy Nurse a call.

  • Thanks for your message. She proposed I take the leflunomide instead of the MTX. I should probably be taking my husband too, for the same reason :)

  • I've been on Mtx with Sulfasalazine and now Leflunomide with Sulfasalazine. Mtx made me feel better in addition to working well on pain and stiffness. But it didn't reduce my swollen joints. I have Psoriatic Arthritis, incidentally. Leflunomide hasn't helped with swellings either but I don't feel as bonny as I did on Mtx and pain levels are creeping up. Conclusion: neither go the whole hog but Leflunomide doesn't suit me so well. Plenty of people have quite the opposite experience, it is such an individual thing.

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  • As far as I'm aware one of the main reasons people come off any DMARD, especially MTX, is because it isn't working. This is what is meant by "failing a DMARD". If you have taken MTX for six months without it slowing down the disease process then normally your consultant would take you off it and try another drug in its place.

    Best wishes, Twitchy

  • Thanks Twitchy. I have a tendency to sit humbly before doctors, listen to them, and allow myself to be dismissed without asking enough questions. I am appreciative of your views :)

  • Hi I'm the odd one out here. I was told 2 years ago I had to take mtx. I thought about it for several months an decided no.

    My reasoning was that I could cope with the pain and sore joints, but I could not cope with an upset tummy. Something I am phobic about. I told my specialist. So we agreed after all lung test and such not to take anything.2 years on ra oestio and lupus are no worse than they were. Everyone has to make their own mind up to what suits their life . My worry was also if I get an illness and I'm already on these how dif would it be to treat that. ? Im61 and at the min no worse. I know I'm not in pain alike some . Some people have no choice their too poorly I have been lucky. Life is good I pace myself ,I swim and garden. Then have a few days resting. Take care everyone

  • Thank you, for this.

  • Hi Karen, I feel exactly the same as you. I am very anti drugs. I was diagnosed in October 2013 (after finishing breastfeeding so not sure if there's a link there) and was recommended a range of medications immediately. By January 2014 I reluctantly started on MTX, prednisone and Plaquenil and my pain vanished immediately. When the Dr thought I had issues with my eyes is stopped the plaquenil immediately and never went back on it. I then slowly came of prednisone so now just take MTX. I also started a strict vegan diet and daily exercise routine during this time and hope to eventually get off the MTX too. I heard a few people got off the medications completely so believe it is possible. Would love to hear anyone else's advice/ experience for a drug free life? R

  • Thank you for this. I don't want to be taking something that doesn't seem to be helping, just because I seem to be able to "tolerate" it. I have been following the Paleo Autoimmune Protocol (The Paleo Approach by Sarah Ballantyne) since February 1, but have not found any real improvement yet. I am still hopeful though, as it makes sense to me. The daily exercise is important; I haven't done enough of that. The Paleo Approach is pretty holistic and also talks about exercise, daily outdoors time and meditation.

  • Hi thanks for that I will look it up. I'm pleased my reply didn't offend . I find aqu aerobic every good, then rest next day. White wine is a must. Lol

    Hope we all find our own way. It's nice to here from people who are taking the chance to say hang on lets try another way and see, I would have been 2 years on meds.

  • I was on sulfasalazine and methotrexate (felt a bit better but not great). Started on humira a few weeks before Christmas and virtually put my crutch down three days after my first injection and haven't picked it up since. Last appt with rheumy he spoke about perhaps backing off the other drugs. I stopped taking the sulfa and methotrexate about a month or so ago - feel fine, though I have noticed a bit of stiffness returning (nothing like I was). Methotrexate never gave me any real side effects that I noticed - except perhaps lots of tiny little pimples (but I still have them all over my back - maybe it's the humira?). Humira for me is a miracle drug - people at work couldn't believe the difference in me - last year my mobility was severely compromised - I went through some bad patches - we bought a wheelchair for when we had to walk any decent distance (going to the park with the kids). Now - an injection once a fortnight and I can open jars, walk, climb stairs, garden (just pulled all the weeds out if a sorely neglected garden bed), get up off the floor... I'm so grateful that something actually worked...

  • Rocketgrrl, that's exactly how it was for me when I went on Humira. I went from not being able to stand or dress myself, to indoor rock climbing, outdoor ziplining and racing a 5K! (Not right away, obviously, but over the course of my first year on Humira.) Along the way, my old rheumy allowed me to ditch my NSAIDs and taper (but not remove) the MTX. It's come back though - maybe to remind me that it never goes away? I feel like this disease has feelings and is spiteful :) I hope the good times last longer for you. I definitely don't attribute any of feeling great to the MTX though!

  • Wow!!! Not at the running stage yet (kind of careful shuffle-run at most), and I'd love to imagine rock-climbing but my right hand wouldn't be capable of it (think it has lasting damage). Have joined a gym - hoping that by this Christmas I've kept improving and haven't relapsed. Aiming to be capable of bush walking (unstable/uneven terrain still tricky for me), bike-riding, and running around with the kids. Hope your decision re the MTX works out well for you - I can definitely relate to wanting the least meds possible (but at the same time, if I get worse again I'd go back on MTX in a heartbeat if my rheumy felt it was having some synergistic effect with the humira, (like you, I don't think it was doing much at all on its own)).

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  • I was on MTX for many years I started off feeling sick one day a week which was bare able but over the years it increased to me feeling so sick all day and night 4-5 days a week they mucked about with my frolic acid I tried sea bands ginger etc it just got worse so one morning they all went down the loo! it was three months before I told my GP as he asked why I had stopped going for my monthly blood tests... I personally found MTX also made me feel very low inteed... I wouldn't advise anyone to just stop as I am not a DR but it didn't seem to give me any side effects only the fact that I no longer felt sick... Of course soon as the MTX was fully out of my body I soon knew about it and my RA became fully active again and the pain was unbearable. So I was moved on the the any THF drugs and found that amazing for a few years until now rare side effects pins and needles numnes in left side of my body. Hope to be given a new form of treatment once the Nero team have finished all the tests and three month outcome least summer is on the way...

  • Sorry can't help you as I have been on mtx for 19 years ( apart from when I was having my son) and not had any problems except a very low white cell count years ago on 25mg. I had to stop it for 6 months and went back on it when I started anti tnfs at 10mgs. I was told I needed to take mtx with anti Tnf to stop me rejecting the mouse protein in it. I inject once a week and have my bloods taken at least 3 monthly. Good luck

  • I'm amazed you've been able to tolerate the MTX for such a long time, that's fantastic that it has worked so well for you. I have read that the biologics are more effective in combination with The DMARDs (ie MTX), which is probably why my rheumy is so quick with her prescription pad to replace the MTX with something else, rather than just remove it altogether. I don't want to let this disease run rampant through my body, but would like to control it with the fewest amount of toxic drugs.

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