I have newly diagnosed RA with "subclinical" symptoms - mostly in the tendons of my hands. I've been talking hydroxychloroquine for a few months with Celebrex and I've had quite a bit of improvement, but still have some issues. Now they want to move me to methotrexate. I'm really concerned as I actually feel quite well at this point. My symptoms in my hands are more of a nuisance than anything else and are not having a signficant negative impact on my life. I have no other symptoms, feel healthy and well otherwise, and have normal energy levels, focus, etc. I know MTX is also about stopping progression of the disease but I'm having trouble reconciling giving up my basically normal and healthy life for the benefit I will get at this point. I've spent the past week trying to decide which days I want to sacrifice every week. I work full time, so of course it has to be the weekend, it appears. Which means my life will consist only of work m-f (hopefully without feeling too crummy, if I'm unlucky enough to be one of those who's side effects linger all week) and feeling like garbage (ie not getting to do anything I want to do or having a social life at all) on Sat and Sun. It sounds like many people find this a reasonable trade off for being rid of RA effects but I just can't wrap my head around it with my disease level right now. Has ANYONE out there not had to "sleep one off" the next day? Has anyone who works from home been able to take MTX during the week if they didn't have to commute to work (I work at home a couple days per week)? Has anyone out there with low disease level and general good health gone on MTX and regretted the sacrifice to their quality of life?
Scared about starting methotrexate: I have newly... - NRAS
Scared about starting methotrexate
I had few side effects from mtx tablets (jabs were a slightly different issue). The first couple of weeks after starting, and after dose increases, I would find I felt a little bit rough for 24 hours or so, but even then, at no stage did I ever feel so bad as to have to ‘sleep one off’. I was still able to be functional and go about my day; I’m a single dad and full time carer to a disabled teenager with complex needs whose day starts at 5:30. I also found if I drank plenty the day before, of, and after, and if I took the tabs of an evening, I had next to no side effects at all once the initial dose change had passed. Not everyone feels awful on mtx or is making a trade, but on a site like this, you will encounter many people that have had issues. Those that are here generally fall into 3 camps: those that have a new diagnosis, those that are struggling and not under control, and those that are doing quite well but want to support others. But in practice, there are quite literally hundreds of thousands of RA patients that are not here because they’re out there under control and living their lives, and a good chunk of them will be on mtx.
I know you say you’re feeling pretty good, but if you still have pain and symptoms, then you still have active disease. If you still have active disease, you are suffering permanent damage to involved joints. It’s taken me 2.5 years to find a med that seems to work even slightly, and that ongoing disease in the interim has left me with wrecked hands and osteoarthritis in a bunch of places that I really wish I could be without.
I had very few side effects from Methotrexate. I think the first week I was a little foggy but after that I was fine. Like you are considering, I took it so any potential issues would occur over the weekend. I then started taking it earlier and earlier on the Friday (around 1pm) so if I had any symptoms I would sleep through them.
I'm currently on 20mg by injection (so a pretty high dose) and I find that I get a bit tired and foggy about 24 hours after injecting (although still able to function) so I inject early evening on Saturday and have a quiet Sunday evening. If you do decide to give it a try (and personally I've always tried what my rheumy has suggested without thinking too much about it) you may need to experiment with the day and time to find what works for you. You may have slightly more side effects initially but hopefully they'll settle after a couple of weeks. You need to discuss your concerns with your team and they may start you on a low dose with a view to increasing it as you get used to it.
I can understand that it's hard to contemplate more medication when you're feeling relatively well but I've never had really bad symptoms but was very eager to stop the disease in it's tracks and avoid joint damage at all costs so, for me, taking everything they suggested was the way forward.
I would just say IF it doesn’t suit you can always stop it. It’s not a once and for all decision. Worth a try?
Yes…..I took methotrexate for many happy years….took folic acid every day except methotrexate day ….. I took it after dinner in the evening….I drank plenty of fluids ….& always kept well hydrated…. I believed I would be fine ..& I was.I have very little joint damage…my hands & wrists were a constant source of pain….but now apart from wonky joints from osteoarthritis they are fine.
Prior to taking Mtx I had ended up using crutches…. & as I had just retired at 55 that was not how I intended spending my retirement.
I honestly think the reason for that was that I hadn’t read anything about it…. So I had no preconceived ideas of what to expect.
I trusted my Rheumatologist and I looked forward to feeling much better.
Prior to Mtx I had taken quite a few other DMards…. & I well remember the nights spent on the bathroom floor with my head down the loo….. I honestly think that happened because I had read that could happen…..so I expected it.
So ignore all the replies you get telling you how ill you will feel if you don’t do XY&Z……concentrate on those of us who have done well on it ….gradually some of us progressed onto different drugs and now 20+ years after my diagnosis I am a happy octogenarian doing exactly what I like when I like 99% of the time!
Discuss it with your rheumy nurse … they have heard every excuse under the sun for not taking it and are willing to explain the upsides….but you have to make up your own mind, and if you do take Methotrexate…really believe it will work for you…& you will be half way there.
I think you’re over thinking and reading up too much about what could happen, all drugs can possibly have side effects but it doesn’t mean you will. Deciding not to take a drug that will stop possible joint destruction (and as already has been said, if you are in pain and have symptoms still then it will be happening) based on what’s happened to some people means you won’t want to take anything as if you type any drug name into here then you will get horror stories. Bear in mind those that post on here are likely to be the ones who are having problems with their mtx and looking for answers, there are far more off enjoying their life and don’t feel the need to post about it. I’ve been on mtx for 25+ years and although I did have nausea for a long time I was still able to work and live my life. If it doesn’t suit you then it can always be stopped but I’d give it a good try as it may just be the one for you. Let us know how you get on 🤞🏻
Hi there, I was diagnosed last year and am on 20mg MTX tablets (started on 15mg.) I felt a little tired the next day (afternoon only) for a few months while my body got used to it, but not enough that I’d need to take a day off. I don’t have any issues now. Just wanted to reassure you that some of us don’t have the side affects we read about. Keep talking to your Rheumy about any concerns you have.
Thanks to those of you who sent "not that bad" replies. I appreciate that. A lot.
I've not actually read a lot of "forum" or "personal account" type stuff. I try to mostly restrict myself to reliable sources (arthritis societies, medical articles, Mayo clinic, etc) though some of the other sneaks in too of course. Part of my profession involves research and risk management and its baked in to who I am to arm myself with information so I can make smart and informed decisions. It was the fact that most of these sources had pretty grim info to provide that has me shaken.
The medical community broadly (not necessarily my docs)appears to consider even side effects that send you to bed for a couple of days or are continuous (and may last the rest of your life) to just be nuicances which you will learn to live with. I have a friend who works in pediatric rheumatology and she said that of course they have to start with MTX in order to get to what she considers fantastic newer drugs because otherwise insurance won't cover the good stuff. Ah, money. The deciding factor in all aspects of life!
I do tend to trust doctors generally, and I likely will acquiesce to MTX. I don't have a history of problems with meds. I've had zero side effects from plaquenil, and have had none from any other meds I've taken or are taking for other things. I had nothing but fantastic "side effects" when I had my gall bladder out (ie my life got markedly better after). So I'm not "planning" to struggle. But at the same time the official literature is grim, and it is a once-a-week drug, so I do need to pick a day and that choice needs to take into account the possibility of sacrifice in the days that follow. I don't want to give up my family/social/me time which is what sustains me in life, and I need to be able to perform my somewhat demanding job well too. Where to build in room to not be me anymore - in case it happens, which I'm hoping it might not - is a challenging decision. So thank you for your input!
I think you will find your friend in Paediatric rheumatology is a bit behind the times….believe me there is no more reliable information on RA & the drugs prescribed for it…than those who take those drugs. Reading what a drug is supposed to do….is very different from the reality! In fact if you are talking about Private Medical insurance in the UK …insurance companies are not involved because Biologics can only be prescribed on the NHS.
If your friend was talking about Biologic RA drugs for adults…now that so many Bio similars are well established you don’t wait nearly as long for the “good stuff”.
You do still need to have a qualifying DAS…to get local authority funding,& depending on your area health authority you will need to have failed on 2 or 3 DMards…one of which must still (I think) be Mtx…but that is not 100% down to finance…it really is because if Mtx suits you it really is the Gold Standard drug we all hope to receive as quickly as possible.
You are fortunate to be considering which Dmard to take in 2022….although to get a Biologic I believe you still have to have tried & had no success with Mtx…..but way back it literally took years to get anywhere near Biologics.
I hope you are one of the lucky ones & get on well with Mtx & don’t need to progress on to the “good stuff”!
I took it like Smarties….until one day…it just stopped working & no matter how hard I tried to stay on it….I had to stop after 7 years.
Do let us know in 12/14 weeks how you get on…fingers crossed it’s a success.
Are you in the States by any chance? This is a sweeping generalisation but I have found that American sites do tend to emphasise the negative.
I have been on MTX 11 years now, and have an extra half hour in bed the morning after I inject. That’s it. I live in France, and its seen as an effective drug that has been used for 40+ years with a pretty good safety profile.
As you probably know it’s not just about pain affecting your joints and daily life, but what the inflammation is doing to the rest of your body. None of us want to have this disease, and none of us want to take these drugs. But my life, and my life expectancy, is better with them than without them.
I tried methotrexate but it wasn’t the drug for me, however I know several other people who take it with virtually no side effects at all. Even though it wasn’t the drug for me I’m glad I tried it because it does work for so many. My advice would be give it a go and see. You will most likely be in the majority that have no or few side effects, if you are in the unlucky group who don’t tolerate it well talk to your rheumatology team, there are plenty of other things to try instead.
Thanks again for the input. Esp those who noted they had little, if any side effects. That is helpful. The thing that scares me is the seeming "inevitability" of side effects (you'll just feel exhausted and sick for 24-48 hours but you get used to it). I'm glad to hear there really are folks out there who got on pretty much fine (helix helix - yay! I could totally deal with an extra hour in bed in the morning!). I should clarify that I am in Canada. We do not have pharmacare so all drugs are either out of pocket, paid by private insurance, or here in Ontario there is also a program to help people without adequate insurance coverage with catastrophic drugs. My insurance will pay for pretty much everything but biologics and biosimilars require preauthorization, and that includes explaining why you aren't just using something cheaper. For the record my friend in peds is at a teaching hospital that is on the absolute cutting edge of ped rheum (and pretty much everything else they do). I have to get some tests done due some unrelated irregularities and get my shingles vaccine etc before I would be starting so my next appt isn't for 2 months. Gives me time to plan, consider (and of course worry, which I will try not to do). Right now I'm thinking about starting out trying it mid-week. I work at home on Thurs and Fri and if I had to sleep in, take a nap, or stay close to the bathroom I could probably do it those days and still work if its not debilitating. That would allow me to go to the office the other three days and still enjoy my weekends with family and friends and pursue hobbies etc.
I have been on methotrexate for nearly 6 years and now take 15mgs a week with folic acid every day bar metho day. Folic acid helps keep side effects to a minimum and everyone reacts differently. So far I haven’t had a problem with metho - I take it on a Wednesday evening with plenty of water and feel fine when I wake up on Thursday. Sometimes I split the dose to 3 tablets in the morning and 3 at night which can help too. It’s certainly worth trying and you can always stop if you do have side effects.
Please read my reply to the last post.
I hv no side affects from methotrexate and take 15 mg per week (6 tablets). I take mine on a Monday and just try to forget about it. Good luck and try not to over think 🙏
I’ve been on MTX for nearly 6yrs, I’ve had no side effects, but all the benefits of settling my peripheral symptoms down, I have AS, but it affects all my other joints as well as spine. I take 25mg which is seen as a high dose in rheumatology. I was initially still working full time as a trauma nurse, so doing shift work I could not plan a rest day afterwards, but coped fine. I would challenge anyone who tried to stop it, as it has given me a good quality of life. Not everyone needs to progress onto biologics, many manage for many years on MTX. Also don’t forget RA doesn’t just affect your joints. My AS has caused damage to my heart and lungs, despite my inflammatory markers always being fairly normal. So it’s important to try and halt disease progression. Try if you can stop if it doesn’t agree with you
HelloCeeY
I was diagnosed with RA many years ago in my mid thirties. Like you the tendons in my hands were the main problem.
I was an early adopter of methotrexate and was also quite anxious, as then it was a new drug for RA, having previously been just a chemo drug and therefore given in large doses . Ever since then, with just one pause when my RA seemed to have paused, I have taken my methotrexate on a Saturday morning. Currently by injection .
Perhaps I am unusual, but I have never really had any side effects that make me feel unwell at all. Obviously one must bear in mind that it is a drug which suppresses the immune system, so susceptibility to catching other nasty things is an issue 😒. Similarly after thirty or so years my hair is thinner, eyebrows and lashes disappearing fast etc but I have found that a small price to pay for respite from a disease which could have been so much worse .
I hope that helps you. It is a scary step to take, but I was working for much of my time including very busy Saturdays as the manager of an opticians. I never missed my dose, and had no side effects.
Best wishes.
You may want to look at recommendations on NICE guideline on RA nice.org.uk/guidance/ng100/...
As many others I have been on MX for 11 years now. Was unable to tolerate it orally but have had no problems with injections . I don’t need to make any adjustments to my day - just make sure I keep hydrated to avoid a headache. And use folic acid tabs 5 days a week. But just inject ( quicker than swallowing tabs) and get on with a normal day.
My RA came on very fast and dramatically (joints of one hand swelled up painfully like a balloon over a couple of weeks...not a good thing for a working musician) in 2019 (other joints too)I was fast tracked to rheumatology, diagnosed seroneg RA.
Rheumy said to hit it hard, so I was put on 15 mg prednisolone and 15mg methotrexate, and within a few weeks my hand worked again!!! Tapered off pred after 3 months (this was the worst bit) and mtx upped to 20mg.
Plus 5mg folic acid since the start ion the 6 days I don't take the mtx.
Early days of Mtx I was a bit nauseous and foggy the day after taking it, so gave myself permission to have a gentle day, but that passed. It wasn't a day written off, just not one I'd want to be doing something really important. Now I don't really notice.
And I am taking it orally.
Top tips...
Take it in the evening, and after a good meal
Drink lots of water
Biscuits to stave off next day nausea, if needed
Do initially plan to have a sub-par day the day after, but it's not a given
Expect the best, not the worst.
My RA symptoms are well controlled, life is back to normal, my hair has thinned but dried out so other people don't really know the difference.
I have blood tests every 2 months.
I've missed the odd weeks around covid jabs with no ill effects.
Long may it continue!!!!
If only my osteo and spinal issues were as easily sorted!!
I hope mtx works well for you, as it does for a lot of us. Good luck with it. And to use tge old phrase, 'feel the fear, but do it anyway'
Hi. I started MTX 3 years ago when my RA was first diagnosed. Tablets to begin with and then pen injections.
I did suffer some hair loss and feelings of sickness but a supplement called Biotin stopped the hair loss and folic acid tablets 6 days a week managed the sickness. I felt less sick with injections than tablets. After 12 months I stopped suffering side effects and so stopped taking biotin once my hair began to thicken back out to normal and I would just take folic acid 2-3 times a week.
Although my RA pain caused me to take time off work at first, I’ve never suffered brain fog from treatment or felt so tired I couldn’t work.
Don’t think about it just pop it. The more you think the more you will worry. What happened to others doesn’t mean it will happen to you. We are all different. I’ve being on it 7yrs yes you will be a bit rough at the start but it does take 4-6 weeks to get into your system. Most weeks I take mine with no side effects at all then might get an odd day when I do. But the way I look at is Hosptial are giving me these things to help me, I know when I was first asked to take them I was always emailing my nurse to ask questions. I take mine on a Friday and drink loads of water before hand and have a light tea and drink loads of water afterwards.
Hi Charlie, maybe I’m one of the lucky ones but I have never had an adverse reaction to Methotrexate. I take my folic acid on Friday and Methotrexate on Sunday. Plus a load of other medication. Now also on Orencia injections. Chin up don’t look at the medication as a burden but as a means to live life as much as you can. Good luck
I am recently diagnosed (March 2022) have just finished steroids and been on 15mgs Methotrexate for 6 weeks now with zero side effects.
I read all about taking them before bed to sleep through the worst effects etc but I have not had any issues at all so I now take the tablets after lunch and continue working as normal. Sometimes I can be Working from home/ in the office / or overseas working which can be quite physical.
I was in a lot of pain in multiple joints when diagnosed. At worst now I have very mild discomfort in a couple of joints. This is due to methotrexate taking over from the steroids. So I am not yet getting the full benefits of methotrexate.. I am able to easily walk 10k steps a day take my husky and Japanese Akita on long walks which I hadn’t been able to do for over 6 months prior to diagnosis.
Good morning, I don't have any problems with methotrexate and wish you and your teenage good health.🐕🐕
I took MTX for 4 years and found it to be very effective. For the first we 12 weeks I had some side effects but once upped my folic acid (once per day, except MTX days), it really helped. I also split the dose - not sure if that is mentioned above but you can take it across two days. Once I did that, I had no issues at all. I don't take it any more due to family planning but I would certainly consider it again if I need it. I was terrified the first time I took it for all the reasons you describe but it was nowhere near as bad as I thought it would be and has really helped with disease progression. Good luck and I hope you have the same experience as I did.
I have very similar symptoms in my fingers and sometimes my feet. Somedays very livable other days I cant take the pain. I tried Methotrexate for 3 weeks and ended up with pneumonia. It is the same as Chemo in my opinion. I was not myself at all on it. I am now on Olumiant and better in lots of ways but not perfect. I have had no side effects from it and the eczema I suffered from my whole life is not longer existent. When the pain is unbearable I take advil or a half or whole Vicodin... I feel like myself and living as close to normal as possible
Hi CeeY I've been on methotrexate since November 2020, 15mg at first Increased to 20mg January 2021, I've suffered with sickness, brain fog, feel like I'm wading through treacle & really groggy for between 5 & 7 days.
When I've said to the consultant he just suggested taking the antisickness pill an hour before taking the tablets, tried this & still no difference, changed to metoject in October 2021 hoping this would help, nope.
Saw the NHS consultant in January this year, he prescribed folic for 6 days but not metoject day.
Still no real difference, saw NHS consultant again in March who more or less said what's worse, having pain or the side effects, I was dumbfounded & so angry with myself after for not pushing it.
I work for our family, a health and safety training company, I'm one of the directors, being honest, I haven't been into the office since December 2020,
I was advised initially to take it on a Friday so I'd be OK by Monday, did this for quite a few weeks but got so fed up of missing out on weekends & fun, I've changed the day a number of times but still the same result.
I'm lucky that it's our family business so not a problem for me to work from home when I can / want but, I've decided that I've had enough of the work which is highly stressful & I think contributed to my illness, I've been stepping back slowly but I know there's no way I could have gone back to work the same as before.
I always thought that when I eventually finish work how I'd spend my time, gardening, meeting friends, going for long walks, reading but more so, spending time with my 2 beautiful granddaughters (5 & 2 years old) whilst I do enjoy doing some of these things, how I'm feeling impacts on them.
Methotrexate/ metoject does work however as I found when I've had to stop it for an infection & covid, but, I've been contemplating getting hold of the consultant to say I can't put up with the side effects any longer.
As most have said above many, many people have little or no problem with it, everyone is different but your situation reminded me of mine 2 years ago, if I do stop it I'll never regret trying it, I now know that there is light at the end of the tunnel even if its a bit foggy 😉🤣 & even if I stop taking it there will be something else I can take that'll work (she says fingers crossed 🤞) x
Ps, sorry this is so long winded 😘
Hi I have had Ra for over 20 years and seriously wish I had started mtx sooner. I was on sulphasalasine and celebrex for years as I did not want to take it as had read so many negative articles. I also was worried about the impact of methotrexate and pregnancy as I was 33 when diagnosed and hadn't had children. My symptoms got worse and my hands and feet deteriorated . I then went on methotrexate 25mg. I felt sickly initially and experienced really bad mouth ulcers. Started to feel better though but my disease was still active so also had a biologic. I'm now in remission. I work 28 hours. Have an active social life and although I take methotrexate on Wednesday I feel absolutely fine . I'm waiting for replacement knuckles but that is because it took a while for me to start the right meds. I seriously believe if if had methotrexate sooner I might not have needed the surgery. Although I've read many horror stories I think methotrexate and humira transformed my life. Good luckxxxxxx
Thanks again folks! If I can continue the conversation a bit - if you are one of the folks suffering crummy side effects, why do you stay on it? Yes, I mean I know it works. But so do many other things. Do you choose to not try something else or does your doc not support you in finding something that has less detriment to your day to day quality of life?
Hi
You've had a lot of feedback! 👏
Adding my experience into the mix: I tried methotrexate tablets (plus folic acid) for 6 weeks for psoriatic arthritis and psoriasis. They didn't agree with me...my throat felt like it was closing and I was very breathless, hair thinned and I felt pretty weak in general. As others say, often you have to give it a try. It was because of the side effects that I was offered a Biologic.
I'm on Imraldi biologic (also called Adalimumab) self-injected every fortnight - I started taking it in the summer of 2019 (UK).
My joints are less painful and my mobility is much better now. It has radically improved the quality of my life.
Best of luck on your treatment path 🍀 and, of course, any problems and it can be reviewed. x
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