Hi all , I know a lot of you take this for many different reasons and ailments. My rheumatologist wants to start me on low dose Methotrexate and I'm literally freaking out and so scared.
I have Chugg Strauss , Antiphosolipid, recurring myocarditis, Bronchiectasis (mild) asthma , eczema, RA etc and the list is growing. I'm not on steroids .
They gave me stuff to read at my drug counselling appointment but of course I went straight into the internet!
Do you all function ok with this , is your quality of life better ,will I be so tired I'm in bed all the time , will I ever be able to sit in the sunshine and have a glass of champagne again ?
I'm so scared about the toxicity of it and yet the doc told me so many people take it !
Thanks
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Sevenstar
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Do a search on here and you will find the Methotrexate fan club. It doesn’t suit everyone, and if it doesn’t then you just stop taking it.
For for many, me included, it gave me my life back. I could do nothing before I started it, and am now pretty normal. I sit in the sun with full protection (and slowly adapting in Spring), I drink a moderate amount of alcohol (now, not when I started), and I get on with my life pain free,
I didn’t drink at all for the first three months. And then, when my blood tests continued to be ok for liver enzymes I started to have the occasional drink (which rheumy was happy with). Now, 11 years later I have a glass of wine with my dinner a couple of nights a week. The modern guideline are that - depending on the individual - a moderate amount should be ok. But whatever you do, don’t overdo it. Max one or two units at a time, as the worst thing you can do is drink your weekly allowance at once.
Sun brings me out in blisters now if I am not covered in high factor sunscreen, hat and sunglasses. I will never sunbathe, but i can be out and about in the sun if reasonably covered up. Start early and by mid summer shorts are ok.
Hi Sevenstar.I was on Methotrexate for about 6 months and tbh it wasn't for me. Everyone is different and the only way you will know is by trying it. It would be a shame to miss out on something that could change your life because of some negative reviews online.
I wasn't good on it, I was tired all the time and i couldn't go in direct summer sun without getting the most intense burning feeling on my skin. Although i have to add that i was taking it for Psoriasis & Arthritis.
Tbh my body is not very tolerant to most drugs.
The only drug i would advise people against is Cyclosporine, I had an horrific time on that.
Good luck with whatever you choose.
P.S i've been on many Biologics and i'm now on adalimumab for a few years now and they have been great. No side affects and have reduced my symptoms by 90%+.
The thing about drugs suiting different people differently is weird isn't it? I've been on MTX nearly 32 years, and I've been on Cyclosporin for 28 years. No major side effects on MTX (yet), and some gum problems on Cyclosporin and I do have impaired kidney function now, but that's due to it being taken for such a long time. (I developed serious eye complications related to the RA), and Cyclosporin is sometimes used). I also take Humira, Pred and Hydroxy. I think I've been quite lucky🤞with tolerating stuff, although I do also have issues relating to the steroids. Again, though, it's due to such long-term continuous use. We just never know what's going to happen when we start a drug.
I'm a member of the Methotrexate fan club! 😁 I started on 15mg tablets and am now on 20mg - by injection which means that even more gets into my system - and I just have a few hours of tiredness/foggy head about 24 hours after I inject so I do it early evening on Saturday and chill out on Sunday. I make sure that I stay particularly well-hydrated on Saturday and Sunday and take Folic Acid (as prescribed by my rheumy team) six days a week. It's definitely worth it for me for the good effect it has on my joints. 😉
I think many on here got RA diagnosis and hit the internet and then you need a sanity break! This forum was mine and I realised quickly I needed drugs to sort the RA out and like any drug there are either side effects or issues you might not be comfortable with.
So you need to think Body vs Medication vs Side effects vs Outcome.
If the side effects and are low and gives you a great outcome this is a huge win. If the drug does not suit you then you ask for another chat with your team and look at other options.
Some of us take to drugs easily and some of us (me being one) cant tolerate many drugs and therefore have issues. However this has not stopped me from finding the one. 3 years in and
I am now on a JAk which has potentially bad side effects BUT it is also doing good to the bloods readings. I have 4 autoimmune illnesses and still struggling to get to a good place but I know I need the RA drugs and others to help me get my life back in balance.
Another methotrexate fan club member here. I’ve been on it at various doses for nearly 25 years and believe me there are far worse drugs that I’ve taken before methotrexate gave me some of my life back. Yes it can be scary trying drugs for the first time but if you don’t try them ( and all drugs not just RA ones can have potential side effects) then you may never know if methotrexate was your drug to get you back your life, You will be carefully monitored and if you have any problems or questions your rheumy team will be there to help you. If you do have any side effects then there are solutions ie I take folic acid 6 days a week. We will be here to support you so feel free to ask anything. Don’t dwell on things that might not happen and look forward to the life you could be having. Good luck🤗,
Thank you so much, in fact thank you all , I feel close to tears at the moment, one disease after another, it's a lot to take on board ! Appreciate all your input 🙏
I take methotrexate. It has side effects, but they are different for everyone. Some are manageable and we can take folic acid and other actions to help. Some are monitored for with regular blood tests and if you show signs of reacting badly they will take you off it and try you on something else. They start you on a low dose and test you every week as they increase the dose slowly.
Methotrexate is one of the most effective treatments for Rheumatoid Arthritis and lupus.
It is a wide ranging drug which suppresses the immune system generally. The downside is that it suppresses your ability to fight off infections, but the upside it that it helps to control multiple immune conditions.
I actually found my hayfever improved a bit after I started taking , which was a nice and unexpected side effect.
I can only echo comments like Kitty's (above). Any drug is scary, especially when we start reading about it. I've been on MTX for nearly 32 years. I started on it when I was 21 - not long after it came into widespread use for RA. Before that, there were hardly any treatments, and none worked for me. It was and is a game changer for many people. I take 4 other DMARDs too (5 in total) as my disease has been very aggressive. I would say the MTX is the one that has given me the least side effects over all this time. Mainly just nausea, but in the early days, they didn't used to use it with folic acid. Once they started to do that, the nausea greatly improved.
By the way, yes, you should be able to enjoy sunshine (with sunscreen, of course), and yes, you should still be able to enjoy champagne!!
I've been on mtx for 30 years, it worked for me ans still does. I still sit in the sun and drink fizz. I am one of the luckier ones. Like you I was nervous at the begining.
I wouldnt be without it, and it took me a good few months to get my head round the toxicity of methotrexate and my new lifestyle. Before, I could barely move without pain, let alone sleep , so it has definitely given me back my life, to the point I can go for runs again.
I stopped drinking for a couple of months initially to see how my bloods were, they came back fine, and I slowly introduced the odd glass here and there. I can have a few now and my liver function is all good. I don't drink on the day I take it, or the day after.
This group is amazing for support and questions. I was diagnosed with RA in Aug 2021 and put on steroids and methotrexate. I hope it works for you as it has me 🤞
It was toxic for me and I only lasted three weeks on it. But I was ok and now I am on something else that works better for me. I say try it and stop if you need to. I had very bad stomach cramps. I was very scared to try it, too. I still am whenever I try something new.
I am not a doctor but I was not able to take meth as I have bronchiectasis and this can cause problems,I have sulphasalazine instead so I would be sure this is checked out. Good luck
I've taken MTX for over 40 years (dx 1971 as a child) and it's been the best drug for me. I'd rather take something that's been around a very long time than newer less known drugs.
I have ankylosing spondylitis which affects my spine, ribs and pelvis. Unfortunately it also affects my peripheral joints: shoulders, hands, feet, knees and elbows. So I was put on MTX 5.5yr ago for the peripheral symptoms. When I miss a dose I can barely walk due to all the tendons being inflamed, and have elderly on Zimmer frames overtaking me. With it I have my pain controlled.I still sit in the sun with factor 30 on, with no issues, and I’m very fair skinned. The rheumatologist who started me on MTX said I could still drink alcohol within the government guidelines of 14 units a week. So I don’t drink on Wednesdays which is my MTX day or Saturdays when I do my biologic. They do regular blood tests whilst your on MTX and my liver function has always been normal. The rheumatologist said avoiding alcohol is more an American view. I would say avoid initially till you know your liver copes with the MTX but if your bloods are stable then no reason not to have a glass or 2 of champagne.
Don't worry. Go with the Flo try it and see how you get on it's not for every one, I started with tablets did not get on with them at all then I started on injections I'm not on 25mg as had a flare up. Make sure you take folic acid I also take omeprazone and drink plenty of 💧 every day. I sometime feel a bit sick if I have not drank enough water, other than that OK. Good luck don't panic it will all come out in the wash.
HI, you have many responses already from lots of people with different experiences with MTX. I'd strongly recommend that you ditch Dr.Google and get you information from sources like NRAS.ORG.UK or VersusArthitis. Far less scary, far more accurate and far more reliable. You could also call the NRAS helpline for more information. I'm on MTX since 2009 and never had any side effects apart from nausea. Knowing what RA would do to my body without MTX, I am very happy to put up with some nausea.I hope it will work well for you.
Agree with all that has been said, I have been on MTX since diagnosed in 2017, no problems apart from feeling a bit yucky day after. My rheumatologist did a lung function test before putting me on methotrexate, am now in remission, so lucky and thankful, you just have to learn to pace yourself. Go for it.
Morning. It is all very frightening. We are however, given a very small dose compared to chemo patients. You are started on a low dose so that your body gets used to it, and then it is moved up incrementally every 3 months. It’s a very scary time. Personally I went from complete immobility to being able to move limbs without screaming in agony, so despite difficulties, I welcomed it. Day at a time. Mtx does work. it’s been a staple for decades x
I think age is a big factor as to whether your body can tolerate Methotrexate. I developed RA at 65 and also have lung problems thought to be bronchiextasis. I notice a lot of people on here have been taking it for decades and are still younger now than I was when I first developed RA.
I did not get as far as Methotrexate as I developed a chest infection just with a low dose of Hydroxychloroquine and was coughing up blood.
I coped by going to the gym and swimming every day initially which relieved inflammation and have also done that during flares. However, it is not easy as you have to have a gym close by with regular access to a pool with usually a lane to yourself, as I had in my old gym. Having moved, this is now very difficult.
All you can do is give is a try but monitor it carefully. I think you have to try it anyway to get access to better drugs like biologics. I was not willing to take the risk but then I found other was of coping.
Hello Sevenstar, I've been on methotrexate for 6 to 7 years initially on tablets 17.5 mg, felt sick after a bit so was put on injections 3 years ago and I gradually reduced to 10 mg which was great. Last year I had a flare up so was put up to 15mg but it hasn't agreed with me so back to 12.5 mg atm with extra folic acid which seems to be working. I couldn't live without it, I've got a rare dermatitis and OA and I had myocarditis in my twenties. I work full time. Good luck with your medication, give it a try and see if it works for you🍀🌹
Hi Flor , thank you for that . Dermatitis is a real problem for me with all my allergies, do you mind me asking what the the rare kind is and what treatment you have for it ? Thx
it's pompholyx where the hands and feet blister and burst, the treatment for it after having many lotions and potions and steroids etc is methotrexate. I am allergic to many meds, my immune system totally broke down in 2015 and it took months before a diagnosis was found x
Oh so sorry, I hope you are doing ok , my skin drives me to the point of distraction at times and I often wonder how it would feel to be comfortable especially at night ! Take care and thx 🙏
On the whole I'm doing well thanks to methotrexate👏I have alot of inflammation in my body and my hands burn at times especially in the night. I didn't realise you could get recurring myocarditis, you must feel exceptionally tired all the time, I hope you get some relief soon you really deserve it🌻
Thank so much , yes the myo is one of my biggest issues, it's all part of the inflammation problem, my heart skin and joints take the hit most often .I can feel when my ❤️ becomes inflamed 😬
I’ve been on methotrexate over 20yrs, started on tablets but then switched to injections which are much better as I used to feel sick on tablets. As been said a bit tired and fog brain fir 24hrs so I also take on Saturday night and chill out on Sunday. Make sure you take the folic acid on the other6 days . Now and again on LFT shows a problem but this not often. Started on 20mg but now on 15mg as also on biological retuximab 6monthly. If I’m sunshine make sure you have good protection and sit in shade if possible plus I also still have the occasional glass of alcohol. This combination keeps me mobile and pain under control. X
Methotrexate did nothing for me so came off it. you have to do what you think is right for you, be armed with all the information and if you don't think its right for you ask if there is an alternative. Good luck
Hi S - I took it for about 8 months ( I still don't believe I needed to but that's anothe story) and I was also worried. However, I had no side effects that I can remember and generally tolerated it very well.
Don’t worry - I’ve never had single side effect from methotrexate - have had from every other drug - or they just don’t work - been on it almost 3 years
And I drink alcohol and spend a lot of times outdoors on all weathers
I was like you nine months ago scared and very anxious being told I hadscleroderma and given the methotrexate leaflet to read. I have been taking it on and off,frequent stops for other infections...
I can't say whether it helps but the consultant says it is keeping things at bay!!
Like others I am always dopey and tired the next day but no other I'll effects
Hi Relax , our dosage is no were the level that one has if your being treated for the C word! Yes it’s a chemotherapy drug but it’s no we’re near that type of dosage,I’ve been on it for several years, yes it still has effects, but having had to stop, due to unrelated illness. I definitely felt it, and was relieved to restart! I have my bloods checked every 8-12 weeks, as my other illness can damage my liver, as well. I take my MTX injection at night, so I can sleep through any side effects. So please try not to worry about it, and talk it through with your team if possible? The folks on this page are a great bunch, and they are extremely well informed. Happy to answer your question and listen to you, anytime.
I was put on Mtx after diagnosis & it was v effective, cor what a relief..! Tablets, then injections, no sweat when you just get used to it. And they are always there for you, only a phone call away.
Then after some time my Rheumy changed me to a different drug, and several yrs down the line I am now on a different one again. This is a v common journey.
Honey, like many of us you have complex health issues. Certainly you want to understand - ask & ask until you do, but ask the right people, as stbernhard advises. The internet is likely only to give you anxiety overload. The Rheumys are Specialists & very clever. Let them do their job for you, and form relationships with all your team. You will find that you work it out together.
I've been taking MTX now for 11 years, yes it was hard going to begin with but I got used to it and like others have said here if you can stick with it-and there other Meds you can be given for some of the side effects if you get any-it can give you back your life almost pain free.
I have been taking it for over 10 years now with no side affects at low dose. When on higher doses I did experience nausea for 24 hours or so after taking. Did help with the RA though. Nothing really to worry about and hope it goes well for you.
Hi Sevenstar, very sorry you have all those ailments. I was on Methotrexate (MTX) for 13 years and it controlled my RA/RD very well really, looking back, though I had a few occasions where liver results got high so stopped for a bit. Although it worked very well controlling the RA/RD, the main issue I had was nausea which got permanent in the last couple of years I was taking it, but I had gone a long time managing that OK. It's a very successful drug by all accounts, but I know what you mean when you read up about it. IT's the same for all this RA drugs! I'm on a JAK-inhibitor now & decided not to dwell on things it could cause and the unknowns as it's new, but just glad if it can give better quality of life. By the way, my liver etc after 13 years on MTX was all recovered fine again, no problem. Looking back it did a great job for me. Yes, tiredness and still some flares, but glad I was on it really. Try not to worry. It will be monitored with regular blood tests & you say if you feel worse etc, so worth a try. Good Luck! P.S. forgot to say - I stopped alcohol for those years as it wasn't agreeing with me (feeling sick) & also could have interfered with its effectiveness. I never thought I'd ever stop alcohol as I loved drinking regularly, but felt better for stopping.
Mtx is the gold standard treatment for r.a. there are side effects associated with it. Read all you can about it and you'll be able to form your own opinion about it. It works, and can prevent debilitating progression of r.a. I read that if r.a. is caught early, you have a better chance of gaining remission.
Late to this but another fan club member here. I may be covering what has already been said, I’ve not had chance to read all your replies so apols if I have.
Re the sun, it effects people differently so caution is the best attitude, test by covering in lightweight cotton or other natural material clothing, covering your head & reduce to see how much you need to cover or wear. The same with how long you can stay in the sun, start in the shade & peep your toes out bit by bit. I lived in a sunny country for the first 5 years of taking MTX & a lot of the time spent working or relaxing on quite a large plot, often with no SPF at all I'm afraid to say. You don't always remember when busy tending the garden & I'd acclimatised in the previous 6 years pre RD so whilst I may pay for it eventually back then I was fine. Do not follow my example!
Alcohol is very much a personal thing again. We're often asked to not drink when we first start MTX so our liver function values can only relate to MTX or other meds. If it’s found they're steady then it's possible to introduce alcohol, preferably wine or beer, not spirits, & again see people if our values rise. Best not to binge drink! I do have an image with recommended alcohol amounts bookmarked so if I can find it I’ll add it later. I would say it's maybe wise not to drink on MTX day, only that it makes sense not to load up the liver on that one day. My first Consultant accused me (nicely!) of drinking when my liver values had a benny. He did follow it with he meant spirits, beer & wine are part of the dining culture & an integral part of sobremesa. I don't drink, it doesn’t like me so there's no point. I do actually have half a can of Guinness at night, medicinal you understand, but I didn’t at the time.
It is a big deal when you start a new med & unfortunately doing what you did is the best way to scare the bejesus out of you! Yes, there are side effects, some serious but this is the most prescribed DMARD, usually the first & many are able to remain on it for quite some time. The more common side effects can often be eased or go with folic acid, or become more tolerable. If you read the patient information leaflet of over the counter meds, paracetamol, ibuprofen etc, they're not without them either but we,de so used to them we don't give it a second thought.
I hope you find MTX works as well for you as it has for me all these years. It can take a little getting used to but hang on in there & hopefully all will be well. Given a few months & hopefully you'll be our newest member of the fan club! ☺️
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