Stopping Methrotrexate

[Joanova]

Hi NRAS HealthUnlocked community! This is my first post here. I am 35, and have had Rheumatoid Arthritis for 10 years now. It was caught early, so after a difficult first couple of months, it became well controlled with a standard treatment of MTX 15mg, folic acid, and occasionally prednisolone during bad times. Because I had finally achieved remission for the past couple of years, my GP had gradually reduced my dose of MTX, and eventually, in October 2016, I decided to stop altogether. I had been warned that my RA symptoms would come back with a vengeance, 4 to 6 weeks later. And yes, they did. I was working crazy hours and very intensely physical jobs in backstage theatre and sewing, so attributed most of the fatigue to that at first, but I had multiple and persistent flare-ups, and pain, which were very uncomfortable and gradually got worse.

I started a course of Western Herbal medicine, the GAPS diet, then Chinese herbal medicine and a course of Acupuncture, over 4 months. It all seemed to help a bit, but up to last week I have been suffering more and more, and have gotten ostearthritis flare-ups in addition to the RA, in joints which weren't affected before! In addition to my condition getting worse, life has been tough the past couple of months, with moving house, being separated from one of my pets, losing my job due to the intense pain, and my dad passing.

So, I "gave in" and decided to see my Rheumy again to get back on my initial treatment. So far, the steroids have calmed down the pain and I am able to sleep again, and most especially, be active! I am a bit apprehensive about starting MTX again, as I used to hate the faint nausea and fatigue I would get the day after. After reading your posts, I am will try taking it after my evening meal, and sleeping off some of the effects, to see if it makes a difference.

I am wondering, has anyone ever successfully come off MTX entirely, and managed to stay in remission? How did you manage? And while I on MTX again, are there any natural supplements you recommend I could take to curb the side effects?

Thanks in advance for your help!

[helixhelix]

Well done you for managing to taper off even if only for a bit! At least it shows that it is possible for you, so maybe next time it will work. Especially if you can find a way to reduce stress and look after yourself more.

I've never managed to do more than drop down one dose of MTX before things kick off again, so can't help with any experience of restarting completely. But I no longer really have any side effects apart from being slightly fuzzy headed the next day. Swapping to injections helped, as did drinking more water. But the main thing I think for me is having taking up a very healthy lifestyle which seems to support my body cope with the drugs. So avoiding stress (as far as one can!), proper sleep, daily exercise, good diet and so on. The only supplement I take is vit D as despite spending hours outside every day I can't get to normal levels naturally. Everything else I've had checked is fine so I save my money for nice fruit & vegetables.

[Joanova in reply to helixhelix]

Thanks helixhelix! Yes, I am really working on building in meditation, stretching and clean eating into my every day life - am so glad that I have been able to stretch, and do some yoga again since I started back up on my treatment. It was just impossible prior, due to the debilitating pain! As per your suggestion, I am also looking for a job which will be less active and kinder on my body... And finding the right balance between work and play!

Good to know that the side effects of MTX become less with time. I took my first dose again this past Saturday and did feel some nausea the next day. Nothing too extreme, but it was uncomfortable. Drinking lots of water did seem to make things better.

[AbbeyRoad]

I completely understand your dilemma. My RA went into remission within one year of being diagnosed and taking prednisone and MTX. I had no inflammation after one year so my Rheumy and I decided to start lowering MTX (I wasn't on pred anymore). And then I decided to skip a dose once a month - a big mistake. Within a couple of months the inflammation was back. Since then I haven't been able to get back into 100% remission but I'm doing OK.

I encourage you to take Liquid Folate instead of Folic Acid. The LIquid version is much better absorbed in the body. I do 4 drops under my tongue every morning.

[Joanova in reply to AbbeyRoad]

Thanks AbbeyRoad, I will ask to try the Liquid Folate! I'm glad you're doing ok.

[Damaged]

The Folic Acid is meant to counter side effects. You may want to consider injections instead of tablets. There are far fewer side effects. Sadly with autoimmune conditions no two people are alike. We all express it in unique ways. There are a lot of programs out there claiming to have a cure. There is no cure. All the diets are similar no dairy, wheat, corn, processed food. Not a simple lifestyle change lol and sadly unproven. You must find what works for you. The good news is early treatment enabled you to have a remission and there will be more. Hang Tuff🙂

[Pamak in reply to Damaged]

Unfortunately I have to disagree with you about the injections. I have never felt so bad as I do now I'm on the injections. The first two months were fine but the side affects then hit very, very badly, far worse than on the tablets. Everything else you say I agree with. It just must be my body

[Damaged in reply to Pamak]

I stopped injections in Dec. with holidays I just could not handle how crappy I felt. I started again three weeks ago. I find myself feeling like I have the flu all week. It continues from one injection to the next. I also had one infusion for Rituxan. The problem seems to be they start several new drugs at once. I never know what is drug reaction vs illness. Also what drug what doing what to me.

Solution, pharmacogenetics via genetic screening. It turns out my body was reacting to folic acid and not MTX. We forget that what can be harmless to some is deadly to others. Hence another argument for the benefits of a targeted treatment approach.

We all react to drugs, food and environmental stimulus in unique ways. All must find a plan that works for them.

I would like for my doctors to actually use the tools I have provided but that just does not happen.

My solution was doing the research and doing presenting it to Rheumie. Fortunately, she is young, progressive and loves it. She has said she loves my visits as she always learns something new. I also helped her navigate MSP. Medical Services Plan is the governing body for health services in BC.

Like all countries they set the criteria or protocols for all conditions.

For Canadians in BC, they require evidence that or has failed to respond to four DMARS prior to Biologics then two TNF inhibitors before B Cell or IL Ext. The key to working with the system is understanding contract law or tort law.

Every single 'Physicians Guide to Treatment ends with a qualifying statement. An out clause. Ultimately it is at the clinicians discretion.

That means if anything goes wrong it is her license and ass on the line. Therefore, if she felt circumstances warranted a divination from that protocol it was at her discretion.

Wow defanately need to get out more lol Very long winded reply🤗

[avocadothrower1]

I was in remission for years, tapered & then stopped metho with consent of Rheum. Came back within a year of stopping. Injections much better than oral MTX. It's a balancing act-- as long as you take min needed to keep controlled & are living healthily otherwise don't fret too much. We are lucky to have the drugs really!

[Joanova in reply to avocadothrower1]

Hi avocadothrower1. Yes, I agree with you that it is a balancing act and finding the right balance for each of us. I am convinced now that the drugs are a good thing, finding the right doses for me, to achieve as normal a life as poss, and with minimal side effects. I think it was either that or risking to destroy my joints, and be crippled in a few years time...

[nomoreheels]

Hiya Joanova, welcome. Yours is a tale many wishing to try a natural approach would do well to consider. I'm sorry it didn't help but as has been said many times there is no cure, medicinal or homeopathic, dietary or otherwise. There's no doubt eating a healthy balance diet helps, work out which food group, if any, trigger inflammation & you'll not go far wrong. Expertise too,mask fir ones specific to your needs/ability.

I would seriously consider asking your Rheumy if you can restart your MTX on auto inject pens, or syringes if they're what's available to you. It's well written that they are better tolerated, especially if you had tum problems or nausea with the tablets. I don't know if it will help you but if you have to continue on tablets I used to split my dose thoughout the day, I took them with breakfast, lunch & dinner. My Consultant didn't recommend taking them all at once immediately before bedtime because of the risk of them sitting on your tum & causing nausea in the night. Increasing your folic acid is another option to ease unwanted symptoms if you're not on max dose that is, ask your Rheumy if the latter. I'm prescribed 5mg once daily except MTX day. You recognise overdoing things & stress are our enemy, if at all possible best to avoid both, not always easy I know but try to set a specific point so you know how far to push & likely to cause a flare.

I've been on MTX 8 years but unfortunately never been able to stop it. In fact when moving back to the UK from abroad circumstances were such that my scripts for meds were delayed by 3 months, I certainly knew that MTX worked for me, I flared so badly when I did eventually see a Rheumy to reinstate all my meds my RF had risen to 1280, similarly my anti-CCP was off the scale compared to the one taken 5 months prior.

I hope once you're back on your meds things improve quickly, it did for me.

[Joanova in reply to nomoreheels]

Hi nomoreheels! Yes, that's not a bad idea to split the dose throughout the day. Do you find that it lessens side effects, or just drags them throughout the whole day instead? I did take my first dose again this past Saturday after dinner, making sure to sit for at least 30 min, and slept very well, waking up fine. Made sure to have a relaxing day at home. Felt some nausea in the afternoon, similar to the feeling I get after eating a large, rich meal - it didn't last too long though. I'll see how it goes with next doses, and seeing Rheumy again in two months so can ask for injections then if necessary. Already do feel better, and able to get out and about with a lot less pain!!

[nomoreheels in reply to Joanova]

I always took them that way from day one so I can't say for sure if I'd have taken them in one go if side effects would have been bothersome. As I said it was something my Consultant recommended so guess it was his experience with his other patients why he gave that advice? I do know I started on just the one 5mg FA which was increased to two when I had a little nausea following an increase in dose, a few months later & it settled but it could have just been an early reaction to the extra 5mg. As it is I now inject & the following day I just have a little less appetite & feel like picking at food rather than a proper meal & I'm a little more tired so tend not to plan anything special on Thursdays. I'm pleased starting it again you've been ok so far & that you feel better, we each respond differently of course so maybe that suits you best. I do know that splitting the dose is better from the point of receiving more of the dose so maybe that had something to do with my Consultant's advice, what I remember was him saying the side effect should be less, I think that was what I hooked on to! Anyway I hope you continue to feel better however you take them! 😊

[Beeper]

I was on mtx only a two weeks and it scarred my lungs. Couldn't breath was in hospital for a week. Now on enbrel and Azathioprine never felt better.

[Joanova in reply to Beeper]

Hi Beeper! Oh, I'm sorry to hear that you had such an adverse effect... I'm glad you feel better! I guess it really depends on each patient.

[Joanova]

Hi all! First of all, many, many thanks to you all for answering. It is so encouraging and enriching to read about all your different experiences - just what I needed! I think the general consensus seems to be that I should give injections a go, and also to learn not to see MTX as the enemy. It's all about finding the best compromise, I guess...

I took my first dose of MTX this week-end, Saturday after dinner and slept profoundly, waking up earlyish the next day, feeling fine. I stayed home most of the day, monitoring for side effects and was ok, apart from faint nauseous feeling I used to have - like having eaten a very rich meal or something. But mostly, fine! I'll see how next dose goes. I made sure also to drink a lot of water and that did seem to help with settling my tummy. Will also try Liquid folate!