Methotrexate Side Effects
My relationship with methotrexate
Side effects are the reason for the fight I describe in one of the about pages. There’s this fight I have every week; it’s a fight with myself. It’s the struggle to give myself shots. So far I always win – I mean lose. I’m not sure.
No one with Rheumatoid Arthritis loves methotrexate. It’s like a difficult marriage that you can’t leave. In either case, there are good reasons to stay on course, but it can get ugly.
There is no love, but maybe I respect methotrexate. I know it is “medicine” and that’s a good thing. I know that Biologic medicines are supposed to be taken with methotrexate. I know I need to take the methotrexate to fight my RA, so I do it, grateful that I have medicine.
Sometimes I wish I did not “know” so much. There is no way that I would tolerate these methotrexate side effects for five minutes if I did not believe I absolutely had to. Some weeks, the fight is harder than others. If I felt ill all day from the previous week’s shot, another shot seems inconceivable. But eventually, I always do it.
Can methotrexate side effects get worse?
There are some longer term benefits with methotrexate for Rheumatoid Arthritis. Some patients continue to improve over time with treatment. But, side effects can wax and wane. At times, they worsen, but usually improve eventually. I’ve ignored this cycle more times than I’ve dumped email spam.
Lately waves of nausea are more like rip currents pulling me under. I feel like I’ve been kicked in the gut by an elephant – and I know how that feels since I really was once! It’s nasty.
If taking methotrexate lasts forever, then it is like being married to it. But methotrexate is like a femme fatale or fatal attraction. It doesn’t care about my feelings.
Fighting hard against methotrexate side effects
If I have to be married to methotrexate, then I’ll do my best to get along. I can…
- Be proactive with my acid blocker every morning – it really does help.
- Chew little pieces of pink bismuth tablets even though I’m so tired of them – they do work on intestinal issues. That’s why people buy them by the box.
- Eat foods that help fight nausea such as hard peppermint candy, peppermint tea, ginger ale, bananas…
- Eat whatever I notice makes me feel better when I’m sick: For years, it’s been Fritos; maybe it’s the salt. Recently, I tried green olives since it was recommended by a Facebook friend who said they are given used by oncology nurses; they worked!
- Force myself to eat simple healthy food that includes protein even when I don’t want to eat.
Does anything help you with methotrexate side effects?
Related posts:
- More thorough list of ways to manage methotrexate side effects
- Methotrexate Injections for Rheumatoid Arthritis
- Methotrexate Side Effects in Rheumatoid Arthritis Patients
- How well do Biologic medications help Rheumatoid Arthritis?
Note: Prescription folic acid is recommended at the time methotrexate is prescribed. Folic acid is assumed, so I did not mention it in the blog. However, I’ve met a couple of people who were not taking any folic acid due to clerical oversight. If methotrexate side effects are extreme or they do not improve, it may be a good idea to inquire of the doctor about increasing folic acid doses. Also assumed are regular blood tests. Please see Methotrexate and RA articles for a more thorough discussion.
Just wanted to add to the side effects of Methotrexate in my case. I took this drug for 3 years. I felt like I had a mild flu all the time and headaches everyday. Finally I couldn’t take it any more and quit. My doctor put me on Miocycline and Relafin which worked very well, but the daily migraines never went away. Not sure why, but I have 2 migraines a day and if i can get enough Imitrex I can get relief but no insurance co. will give more than 9 or 10 pills a month.
Sometimes these headaches are a result of RA in the neck. Just in case, it should be looked at since it’s so common & can have serious consequences if not treated properly. I know there are a lot of causes for headaches, but this should be ruled out just in case.
My doctor prescribed Leukovorin Calcium to take with methotrexate for nausea. I take it for 3 days after I get the shot, and it significantly reduces the nausea from the methotrexate shot.
I toook methotrexate for 2 years. Upset my syomach so doctor put me on the injections. One day after giving myself the injection my face turned bright red and my heartbeat went high. Yhis lasted about half hour. My doc took me off methotrexate now I have more pain. I am also on remicade and prednisione.
Am due to take mtx for first time tonight but so scared also have busy week at work this week and cant take time off and reading all the blogs seems I might need some time off.
Gail,
I never had time off for it. It is not that mad for most people. I had no side effects at all from it until my dose was higher – 25 mg. This particular post was one where we tried to draw out folks who had the weirdest side effects so we could discuss them, but they are not typical. Please click thru the MTX pages on the menu up at the top of the page. Most patients are greatly helped by this med & don’t suffer bad effects. You do have to obey orders such as checking drug interactions, using folic acid & sunscreen, and not drinking much. But you will likely do well. Take care.
Just bumped up from 20 to 25 mgs, oral. Taking it as a split dose, two days per week. No new side effects so far…
This article could have been written by me it fits my “love / hate” relationship with Methotrexate injections perfectly! The closer it gets to my Saturday night injection the more depressed I get, knowing what I will go through….Recently, due to a cut that wouldn’t heal, I had to skip two weeks of my injections- I hadn’t totally realized how horrible they made me feel, until I lacked those “feelings”!Then when I took my injection this week, Holy PooPoo…..the “Elephant” kicked my booty….I could hardly get out of bed the next day the fatigue was sooooo bad….I now know that I am not alone with this “marriage of necessity”! And that really helps….
Anyone get itchy red rash upon Increasing methotrexate? Started on one knee, that which is spreading bigger each day, then showed up on both elbows. Irritating!
I thought it was just me. I am glad to hear I am not the only one having a reaction after dozing. This past week I made an effort to eat a hardier breakfast before getting my shot and followed up with lunch. It seemed to minimize some of the discomfort. I find myself very fatiqued on shot days and sometimes the day after.
i feel the need to warn all of the “side effects” methotrexate had on my husband of 25 years.After just one 4 tablet dose he felt nauseated (expected)..within less than 2 days we were in the emergency room with him experiencing slurred speech, unsteady gait, and vomiting. After blood tests were run it was discovered all his blood chemistry was way out of wack and he was transferred to another hospital. He had a brain stem stroke from plaque in his veins that had broken loose (did not have high cholesterol). after an agonizing 8 days in a coma and 2 operations to relieve brain swelling he was determined to be brain dead. And this was all do to a little pill meant to help with his arthritis.
Hi Jeane,
I’m very sorry about your husband. That is a very sad thing that happened to him. It’s not clear if this is a recent event, but I’ll say a prayer that he improves.
I’m not sure that the methotrexate contributed. Four pills is an extremely small dose. But I realize this is still a horrible tragedy for you.
With RA, cardiovascular disease, especially the silent kind with normal lipid levels, is extremely common. In fact, cvd-related causes are the leading cause of death for people with RA. Methotrexate is not shown cause plaque in the arteries; but RA is. In fact, recent studies show that men who take methotrexate tend to live longer and researchers are looking at more ways to use mtx to fight inflammatory heart diseases. Here is the link to articles on this site on the topic of RA cardiovascular disease. Here’s another recent study about reduced cvd with methotrexate in RA patients.
Hi, Thank you for all of your posts. I am a newbie!:( I started having pain in my hands a few years ago. I couldn’t close my hands in the morning. I was tested for RA and was negative. I was contriubting the pain to all the typing I was doing ( I am a physical therapist and was doing a lot of evaluations). I started having carpal tunnel symptoms, but they went away (had some therapy). Then it came back witha vengence. I made an appointment with a hand surgeon, but unfortunately i was diagnosed with breeast cancer a few days before the appt so he refused to do the surgery until i had the cancer straightned out. I ended up having a bilateral mastectomy, and reconstructive surgery (no chemo no rads). Last february I was diagnosed with RA (April would have been 1 year since the BC dx). I had a huge flare up, elbows, wrists, hips, knees (bilateral bakers cysts). My neck hurts too sometimes. My rheumy recommended methotrexate. I am terrified of it. I have procrastinated taking it (i think he’s mad at me). I also went for a second opinion at John Hopkins in baltimorer (I think he’s mad at me for that too, but happy that the doc concurred with his dx, lol). Sorry I’m going on like this. Although, I had that one huge flare up (lasted 5 days), I have been mostly good. The swelling in my hands is down, and baker cysts are soft. I was even able to run two miles. My doc feels that I will ruin my joints if i don’t start treating the disease. I am a physical therapist, and I am used to being fit and strong. I work with children, so I am always kneeling, crouching, running, skipping. My job is very physical. So my dilemna is weather to start taking the Mtx and treat the RA early, or wait until i start having flare ups again. Sorry this is so long.
Hi Debra.
What you say about being active is a common theme with RA. You could read through the RA onset stories – see menu tab RA stories – to see many say this. We sure didn’t get sick from being lazy or having a poor diet – as is thought to be the case with many other diseases today.
The mtx has to be your decision. I’d recommend you read through some of the mtx pages here & the comments pages to see what people say. There’s a tag on the Tags List for mtx – just click on it & it brings all the pages tagged “mtx.” So learn as much as you can before you decide. Ask your doctor about this and any medicine, “How will this benefit me?” and then ask “What are the risks if I do or if I don’t?” – then you try to decide whether it’s worth it to you. Docs tend to be very comfortable & positive about this drug because they’ve used it safely in so many patients & serious side effects are very rare- but patietns are less comfortable – and need more information in order to decide since we are the ones who have to take the drugs…
I have heard only good about Hopkins & if I were w/in a 100 miles, I’d probably go there too. Your doc shouldn’t be angry that you got a 2nd opinion about a dx as serious as RA. hope this helps.
I was diagnosed with RA in Dec 2008. I had suddenly become unable to do even basic tasks like turning on a tap (faucet)or getting out of a chair.In short I was nearly helpless.I saw the rheumatologist, Dr Mascarenhas at Royal Devon and Exeter Hospital in May 2009 and he started me immediately on MTX working up to 20mg and folic acid 5mg daily, later adding HCQ 200 daily.I was terrified.I need not have been. I’ve had no side effects whatsoever and my life is back to normal. Disease progression has stopped and damage is minimal. All I get are minor aches and pains after some muscles have been over used such as shoulders after piano practice or knees after a 5 mile hike.The NSAID ‘Arthrotec’ (Diclofenac sodium 50mg plus misoprostol 200 micrograms)or a couple of paracetamol soon restores the status quo. The only supplements I take are fish oil (essential I’m told) and vit B6 which a trial showed reduced inflammation significantly.My CRP and ESR are steady at around 7 and 11 respectively so room for slight improvement there. For me MTX is a miracle cure
Ben, I was/am on that combo. What improved things for me even more was when my doc increased the methotrexate from 20 to 25 mgs, and said split the dose, taking half on Mondays and half on Fridays. Heck, it has even helped in joints that are supposedly just OA, not RA. You might ask your doc if he thinks that might be an option for you. I am on 400mgs of HCQ though. Was thinking of dropping it to 200, but splitting that dose and taking half in morning and half at night. I do notice if I miss a dose of hcq.
Maybe Iam playing with Fire but, I refuse to take methotrexate. I do not like taking it because it causes alopecia. My hair is all I have left and I am not ready to be bald yet.Does it affect anyone else like that?
Methotrexate is anti-folate so it can cause hair loss in some patients, especially in cancer patients who take doses many times what RA patients take. Usually, RA patients can get away with using folic acid supplements to moderate the side effects & still benefit from the drug. If that happened to you, I wonder whether your doctor increased the folic acid to se if it helped?
I understand how you feel. I’ve lost a lot of my hair this year – but I had to blame the body instead of the mtx since I was off it at the time. It is your decision & I’m sure your docs have told you the risks & benefits so you can decide. We don’t all have exactly the same side effects.
I’ve been experiencing worse side effects since recently having my weekly MTX dose doubled. For some reason it seems that eating something really sweet seems to help a little – but I think next shot I’ll try the peppermint candy.
I also have to give myself Humira injections every fortnight – now THAT’S an night to look forward to 😉
I also now get waves of nausea every time I smell something with a high alcohol content, like wipes or hand sanitiser – I’m guessing it’s a psychological connection between the smell of the pre-injection wipes and the nausea after the shot…
I am one of those people that was in denial about having RA. I am not stiff in the morning ( my best time of day ) however by night I am exhausted and achy in my knee’s ankles, feet and shoulders. I just started taking this drug and already have sores in my mouth and a sore throat. I was not prescribed Folic Acid but I am taking over the counter 1000 mg. I e-mailed my Doctor and not only did he not know who I was ( thought I was a man ) he then told me how to break down my dose and it did not at all coincide with what I am suppose to do. I am suppose to take 1 pill weekly and he suggested I take 1 at breakfast, 1 and lunch and 1 at dinner. I love your information and just needed to vent. I am really getting overwhelmed by all of this. Would love to hear from others experiencing some of the same difficulties. Don’t know why but makes me feell better to know I am not alone.
Took my first dose (very low compared to what I have been seeing here 7.5 mg) Was fine the first day,although my teeth felt cold,tired and achy the 2nd day but felt like my RA so ignored it. The 3rd day came the nausea and cramping and super bloated (gained over 2 lbs in a day) lost it today and spotting. I seem to be able to ignore most of the symptoms because I have endured living with nausea for years ( I have celiac disease) I was going to try making fresh ginger tea and am going to try the Prilosec and peppermints too. Thank you so much Kelly for putting this site up! and thanks to everyone and their suggestions!!
You’re welcome, Michelle. Good luck. I never had side effects with doses that low and I hope you do great! The suggestions for treating side effects are very helpful. I also like the pink wintergreen losenges and sometimes use green olives – I wonder it it’s the salt? Or maybe those just distract my brain from the methotrexate taste? 🙂
I was on Methotrexate for nearly 8 yrs. It took away my whole immune defence and let in Aspergillus fungus which ate holes in both lungs. Aspergillus can get to the heart too.
One hole was all of my lower lobe of lung and the surgeon cut of half my lung. Painful even 10 yrs. later. I cannot take the biologics as they are even more suppressive.
A rheumatologist told me many more Metho. users are presenting with my problem. So careful – certainly after 2 yrs.of use.
If you start getting a cough that is a sign – get chest Xray urgently !
At present what are using then. My mnother is also on Methotrexate since 8 years. All these years, she is ok but recently, she started fever 103 degrees or sometimes 100 degrees. MD asked to discontinue MTX but did not seek the advice of Remo. My mother is getting fever constantly. I want to know if you are ok all these years and side effects developed only 2 years back.
By
Vinitha
Fever may not be caused by the medications, but it can also be caused by the disease.
https://rawarrior.com/rheumatoid-arthritis-fevers/
Please talk about this with her doctor.
Hi Vinitha
Pls send me a email at asatyav@gmail.com
I would love to help for your mom’s condition.
Thanks
I’ve been on oral methotrexate for 6 years, since my diagnosis. My weekly dose is 20mg at the moment. My Rheumy says 20mg is the highest oral dose she will recommend. I am normally taking 15mg a week, but we increased the dose because I had to stop Humira (that is a whole story on its own). I also take 2mg daily of folic acid. I am also on 9mg daily of prednisone (another long story)
About 3 years ago, I was taking 15mg (that would be 6 of the 2.5mg tabs) MTX once a week with 1mg daily of folic acid, I started having serious nausea/vomiting side effects on a daily basis. My Rheumy said to increase my folic acid to 2mg daily and to split my MTX dose….take 7.5mg in am and 7.5mg pm.
I have not had any nausea/vomiting since then. Worked great for me. I was hoping to get an increase in my hemoglobin, but I didn’t….it’s still around 11.4 which in the scheme of things is good.
My Rheumy has never suggested or talked about injectable MTX.
Methotrexate is deadly stuff and nearly killed me. Just learn all the side effects and that includes the so called RARE side effects as I found out they are NOT so rare afterall.
This is the third time you have commented thus and I feel it’s important to point out that the disease itself is quite aggressive to the lungs in many patients. It is sometimes difficult to know which caused the problem, the treatment or the disease. That is an awful predicament for us.
I currently take methotrexate and the side affects are terrible. I’m on folic acid as well but it only helps so much. On methotrexate I feel sick for days….I go through nausea and vomitting and anything else you can name. Some days my throat and stomach hurt so bad I cant even swollow because of the pain of vomitting so much. Eating at that point is just out of the question because I cant swollow and everything I eat seems to come right back up. Does anyone know if the side effects for the methotrexate tablets or injections are the same. I am currently on methotrexate tabs and I have to take 6 pills once a week. I want children but you cant get pregnant while on this medicine. I just dont know what to do but to deal with the pain and sickness. Will I ever start to eventually feel better because I dont see how the medicine even works besides just making me sicker.
Youre right you would need to stop that treatment about 3 months before becoming pregnant according to most sources. It is a struggle to know if the meds helps sometimes. Sometimes the dose is not high enough to improve symptoms, yet there are still side effects. I just replied to your other post and I’m wondering if the dr realizes all of your concerns. They could increase the folic acid to improve your nausea, etc. Sometimes they split the dose or other tricks. There are some tips on the MTX tab on the menu in the list there. Some do eventually get a lot of improvement from mtx but many others need other meds added to the mtx to improve symptoms. It’s hard, I know. I’m sorry. Your mtx dose is still very low and could be raised if they can get those side effects under control. Also regarding pregnancy in case it helps, https://www.rawarrior.com/rheumatoid-arthritis-and-pregnancy/
Does anyone receive rheumatoid nodules as a side effect?…I also receive nodules under my skin that eventually turns into bruises. I have so many bruises on my body you would think someone was hurting me but its all from RA. Also I have no appetite at all and my hair is so thin and brittle and is constantly coming out. Sometimes my gums get swollen in the back of my mouth. Too many side effects.
Rheumatoid nodules are caused by the rheumatoid disease. They tend to last a long time or be permanent but can sometimes go away. But there are tiny nodules more like blisters that can be caused by mtx. They are temporary. No appetite is also a common effect of rheumatoid disease, but mtx can cause nausea, which can also make it hard to eat. Mouth sores are a common side effect of mtx and can be improved with increased folic acid in most people – make sure you read the folic acid posts & comments. Of course there is no way we can know for sure what’s going on with you and if you are worried, you should definitely show your doctor. Taking photos is also helpful in case you can’t get in before they go away. Are you taking prednisone? That can cause bruising. If not, then I’d definitely talk w/the dr about that one. I hope that helps a little. https://www.rawarrior.com/folic-acid-with-methotrexate-the-debate/
https://www.rawarrior.com/failed-experiment-methotrexate-over-the-counter-folic-acid/
I have been taking methotrexate for 15 years and I was always told the nausea was in my head. They believed me after about 6 years of complaining. I do take folic acid as well. I also had the injections for this but I went into the doctor every single week to get them because I couldn’t bring myself to inject it on my own. I’ve taken methotrexate at all times of the day and the best one that works for me is at breakfast. I eat some of my breakfast and then have the tablets then eat the rest. I rarely get the nausea if I take them this way.
I stopped the methotrexate last fall because I just was tired of thinking I had RA..>Well, I am back on it because my husband found out. I guess pretending it isn’t there isn’t a good way to deal with it. Anyway, I am having such pain in my hands — I know this is a common RA thing, but it seems it has only gotten worse since the methotrexate. But then again, maybe it is a coincidence? The joints from my toes to my elbows hurt…Kelly I know you deal with a whole lot more pain than I do. But could methotrexate make pain worse? And what should the methotrexate do for me in the ideal situation? Does it have potential to take pain away or get me to stop being so darn tired all the time? I don’t remember the last time I felt rested….I get so darn tired of the weariness.
Hi Jane. I’m so sorry. There are posts here where I say similar things – realizing I really do have this. I still like to pretend it’s not real – even for a few hours or days & refuse my advil. Then it is worse & I eventually give in & get w/the program to take what I need to function somewhat. Denial is a common and at times a useful thing as I’m sure you know.
I have been on & off the mtx & it does help – for me about 15% maybe – a lot less swelling for example. So – a couple of thoughts for you –
Maybe your disease progressed along & it could have done that anyway – no way to know for sure – so that its just worse now. It does take the mtx about 6 wks to show its full benefit – How long have you been back on your dose? Maybe your dr will increase it?
Two, there is a side effect that some people notice of it increasing joint pain for a few hrs after the dose & then it gets better. It sounds like your hand issue is longer lasting so that’s not it probably.
Ideal? I know a guy whose RA affected him all over like mine does & the mtx enables him to run marathons. Most of us will respond as well as he does, but a majority probably get 20 to 50% improvement from it, depending on how severe their disease is – that can be a big help. Fatigue is something that mtx never really took away for me. Again, maybe a higher dose OR check some other things out to be sure you don’t have low thyroid or low B or D levels.
I just started Methotrexate injections last night. I was diagnosed with RA when I was 17 and started oral MTX. After 1 month I was too sick to continue. Trouble between then and now (I’m now 25) with keeping the diagnosis, but it has been confirmed after years of monitoring. I handled the first injection really well. Only complaint is minor nausea/queasiness today. I read I shouldn’t take Zegerid for acid-reflex while on Methotrexate so my heartburn is insane. I’m not sure what antacids are safe to take while on MTX. Only doing MTX and Folic Acid – no other ‘treatment’ at this time.
Jessica, my RD put me on Prilosec. I take the generic OTC, double dose making it the same as the perscription strength, as he told me the insurance company won’t cover it and I’ve had that experience in the past.
I had a horrible time with the side effects of taking methotrexate orally, I was losing weight because I couldn’t eat for 2 days a week. The only thing I could keep down was pretzels dipped in peanut butter and I drank a ton of ginger-ale. My doc switched me to the injectable methotrexate and it alleviated my side effects (other than susceptibility to infection of course), by almost by 100%. I also do my injections at night and I think that helps with fatigue. I would never go back to taking the pills as much as I dislike giving myself a shot.
Thanks Mr. C! I had trouble with Prilosec causing migraines as a teenager so I decided to give Pepcid AC a try. So far so good.
The injections in general are going pretty good! I gave myself the 5th shot tonight. Over the weeks I’ve had less side effects. Unfortunately, I learned tonight if I stay up late on the night I take the shot I will not sleep through the nausea. Ginger Ale and Saltines helped though.
I have noticed that I will randomly feel like the energy has been sucked out of me during that day. Like I turned into Jell-o! Anyone else feel like that?
I go back to my Rheumy in a month, hopefully the treatment will continue smoothly =)
Hey there, I’ve just found this site and it seems to be one of the best resources for information about methotrexate I’ve seen.
I wanted to share my side effects as they seem a little unusual and I’m just wondering if anyone has experienced anything similar. I was diagnosed with RA just before Christmas and started methotrexate at 10mg in January, but I got quite dizzy while I was on it and my doctor decided to stop it for a few weeks then try again at a lower dose so we could determine if it was the pills or if it was something else, like a virus.
The dizziness passed after being off the pills for a couple of weeks. I started again at 7.5mg for a month, then went to 10mg again and I did start feeling lightheaded although it wasn’t as bad as in January – no dizzy spells or “seasickness”. I just went up to 12.5mg at the weekend and am feeling a little worse (though I’m aware my nerves and expectations may be playing a role in that). However, I haven’t had any of the post-dosage nausea and malaise so many people seem to experience, so far at least, so I think overall I’d actually been very lucky. I’ve been awfully tired recently too but I am just getting over a bad head cold so it’s likely as much that as the RA or medication.
Has anyone else had this as a side-effect? It seems pretty constant, rather than something that flares up for a day or two after my dose. The fact that restarting at a lower dose seemed to help would suggest it’s something that might die down after being on the medication a while, and the pills are definitely helping with my pain, even after a few weeks on a low dose. Personally I’d like to go a bit slower with building up my dosage but my rheumatologist really wants me up at 15mg as quickly as possible – I was on 7.5mg for a month but she wants me to jump up by 2.5mg every fortnight now.
Thanks for reading
David
Hi David. I think that is a pretty standard way to raise it. It’s a very low dose chemo still. It could be nerves like you said or hopefully a virus like you said and it will be better this time.
I have just had to come off mtx after 6 months. My ribs have been imflamed/painful and causing breathing problems and recently a dry cough for sometime – my G.P doc said that everything was “normal” and just continue with the treatment.I have just seen my R.A consulant who stopped my mtx immediately and said I may have lung scarring due to mtx. I have had a chest X-ray, due a lung function test and a MRI scan to check for R.A damage to all joints. Please all lookout for any side effects and don’t be fobbed off with a ” you’re ok” like I was.Wishing you love and gentle hugs Jacqui 🙂
Hello, on my quest to find more information on RA I found this site and I am already grateful to have some support and find other RA patients that are dealing with the same problems that I am dealing with either RA or the treatment for it.
Ever since I started methrotrexate my hair has been falling and the fatique is incredible. But lately, I have had some problems with my lower extremities and cellulitis seems to be here to stay.
They took me off methrotrexate while I had cellulits for 2 weeks and my RA has flaired like I never seen it before. I am having a hard time taking Prednisone because I am not sure that the cellulitis is gone plus I hate the weight gain with prednisone. Does anyone have any suggestions? I am miserable. I still work every night but that is all I been doing lately and I want my life back. I am in a battle to not allow RA to take my life. I miss working out twice a week and going to other activities that helped my mental health. I hope you all can give me some support and advice.
Thanks, Nurse Pizza!
Hi there! I am newly diagnosed with Severe RA after the birth of my 3rd child…I have been prescribed a dose of 12.5 mg once a week….My doctor says that I will most likely be on it for two years….Has anyone been on it for that long? Did you symptoms subside/go into remission? I am really worried about taking this med BUT know that I need it as i have over 30 joints (including all the little finger and toe joints) affected. Any help/advise would be appreciated…I am a 32 year old female with 3 kids and all i want to do is be around for them and to not live in excrutiating pain everyday of my life. Thanks in advance for any comments!
Methotrexate made me feel, for lack of a better term, nuts!
Thank you Kelly for this forum! I have to to add my two cents about my experience with Methotrexate in the hopes it might apply to someone else out there.
I did not experience the typical stomach upset that is associated with common side effects of mtx. I took my prescription folic acid and that seemed to do the trick. However, after a couple of months on the med, I noticed that I started experiencing PMS like symptoms all the time, not just around “that time of the month.” I was not my usual smiley self, and could get upset easily. When I was upset, I lost control and started to feel almost “crazy.” I could not control my emotions and even would hit and slap myself without knowing why I was doing it. I talked to my doctor, who just shook her head and said, “I don’t have any other patients with this reaction.” Meaning, I must be making this up? The doctor agreed to take me off mtx, but almost begrudgingly due to the potential for it to help my severe RA.
Within two weeks of stopping the mtx all my emotional symptoms disappeared and I was my smiley self again (albeit fatigued and in pain as usual). I did some research on the internet and found a journal of medicine article and several blog postings regarding this lesser talked about side effect of mtx. It happens mainly in children I found.
The worst thing about this side effect is that the doctors act like there is something wrong with you and not the effect of the medication on your individual system.
I just wanted to post this so that someone else who might have experienced this knows they are not alone, as I felt at the time.
Thanks again for giving us a place to be heard!
Mariza — I knew it! I have turned into a stranger, a raging, cursing woman with PMS X10 (although I’m way postmenopausal). Nothing I have ever taken has affected me in the way this MTX has — so similar to what you describe. Two or three of the days are raging, yelling, slamming around and two or three more are teary. How can that be worth it? None of the reviews or professional information will own that this can happen. If you don’t mind, could you send me info on where you learned about this as a possibility? Thanks for any info and for sharing your experience. Feel better, Ann
I refilled my MTX pills yesterday. When I go to pick them up they tell me, they will look different than my previous scrips because it is from a different manufacturer. I went from tiny round orange pills to slightly larger round yellow pills. My question is, has anyone experienced different side effects from taking different manufacturers generic MTX? At 25mg’s the previous pills didn’t bother me, hoping that the new ones won’t either.
Hi Mr. C, On rare occasion, we have had patients say there was a different level of effectiveness between the two. The manufacturer is allowed to have a slight variance in the level of ingredients – I think it’s something like 15% with mtx – If you notice a difference of one being stronger or weaker you can tell your doc, make adjustments, and try to get the pharmacist to get the one you prefer. Few people can tolerate 25mg doses orally but you have been doing it, so hopefully you can continue the same. The injectible is in shortage so thats another reason to continue. If the side effect is worse than usual you could ask about taking an extra folic acid or what the doc wants you to take for nausea – there are otc & prescription meds so you don’t need to just suffer. Good luck.
Kelly, I just want to say thank you for this site. I live in Canada, have RA (diagnosed in June) and finally will be going to rheumatologist at the end of this month. I am lucky to get in to see a rheumy that quick. It can take up to a year because we have a shortage of Doctors. This site has been such a godsend. I had no idea what RA was, and before I found this site, I was terrified. I am too tired to read much during the week, but I love to come into this site on weekends. I don’t feel so alone and scared now. Thank you Kelly and everyone else who shares.
Hi Louise, I hope the doctor’s appt goes well. I’m sorry the wait is so long. That’s terrible – especially when they say that early treatment is so important. You’re not alone; there are so many of us on the same road.
Take care of yourself,
Kelly
Was really nauseous today and I remembered what you said about Fritos. And they worked! Feel much better. Now if only I could open the bottle of water I just bought…
O wow. I’m so glad. Different things work at different times for each of us. And yes, fritos will leave you thirsty! 🙂
HI RA warriors. YEAH ME. I did it. I gave myself my first Methotrexate injection about an hour ago. I really can’t believe I did it with no problem and I am sooo thrilled. I have been dreading it for a month, terrified of needles, actually made myself sick to my stomach last night worrying about it. The needle is so thin, that it doesn’t hurt at all. What hurt was me pinching the skin on my stomach too hard. I will go back to the pharmacy one more time, just to prove to myself that I am ok with doing this myself and that I’ve got it down pat. If anyone out there is considering going from the pills to needles, take it from me, it is not anywhere near as bad as we convince ourselves it will be. If I can do it, please believe that anyone can. Now I just have to wait and see if I suffer any side effects. I have stocked up on gingerale, ginger tea, peppermint candies and olives and fritos. Thank you so much Kelly for this site. I know that I am never alone with this disease and have learned so so much in such a short time reading for hours on end mostly on weekends. I am so glad that today is over with, I stressed myself out over nothing. Thanks for being there.
Was curious about your use of Pink Bismuth (Pepto Bismol) – the literature on Methotrexate says not to use these two together. I figured it was because the PB has a small amount of aspirin in it. Did you pharmacist say it was OK due to taking a low dose of Metho? Thanks!
Mariza – I want to thank you for posting your experience with mtx. I know mtx helps a lot of people, but medications can affect different people different ways. I am currently experiencing a flare of my RA (which hasn’t been too severe so far, luckily), and my rheumy is thinking of adding mtx (I’m currently on plaquenil). But I am scared to try mtx because of the effects it had on my sister, who is battling a fairly severe case of a rare autoimmnue disease called relapsing polychrondritis (RC). Within a few weeks of starting mtx, my sister became a mental and emotional mess. She was not herself at all, and the change was so sudden and so dramatic, it really had to be the mtx causing it. But her dr likewise said mtx doesn’t cause “mental” side effects and told her to keep taking it. She spiraled downhill rapidly and was eventually hospitalized for a week in the psychiatric ward after attempting to commit suicide. You’d have to know my sister to know this was not her at all! She stopped the methotrexate and gradually got her life back. Unfortunately, it’s life with the RC, which doesn’t seem to have as many treatment options as RA (and after her experience with mtx, she is understandably VERY nervous about trying any new medication). She’s currently on high doses of prednisone. Anyway – I just wanted to let you know you are not alone in experiencing this type of side effect with mtx! Fortunately, it sounds like a rare side effect that the vast majority of people will never experience.
Just now taking third dose of MTX I do have some nausea but nothing to bad. I have found candied ginger to be very helpful. I hope to see results from MTX soon. I had pain for about nine months so bad I could hardly move my elbows and fingers for the first couple of hours each day. Never thought Picking up a pillow could be painful. My fingers feel a little better but elbows are still quite sensitive, still have days when it seems like everything hurts. Doc gave me prednisone also to use for flares but not quite sure how bad I need to feel before I take that to. Thanks for all the info. At least I know where to go for great support
I had been on methotrexate for 2 years. I added enbrel 1 year ago. I have had nausea ranging from mild waves to an hour or two in a death grip. I also had other transient symptoms, fatigue, weak muscles and “spaciness”. I came down with a nasty virus about 6 weeks ago. My internist told me to stop the mtx and enbrel for a week. I did. However I have only continued on enbrel.So far I have not had any return of RA symptoms after 4 weeks. But, I feel great. Methotrexate sucks. I hope this continues because I don’t know if it’s worth going back on mtx and feeling like crap. This is only my experience. Each one of us has their own experience with this disease and meds taken to treat it. I’m not preaching, just sharing.
thanks, Doug.
Hi
I inject 25mg Methotrexate weekly, and do the following:
1. I take a high dose of vitamin B at least 24 hours before I inject;
2. When I inject, I take an anti-nausea pill immediately beforehand;
3. 24 hours after injecting, I take another high dose of Vitamin B.
I used to “lose” my whole Sunday to side-effects, but it has really improved since I started doing this.
Just thought I’d share.
Best regards,
Norah
Hi: I have been on metho shots since nov 2012. I have only seen my reumy twice. My question is, will I ever be able to come off the methotrexate or is this a lifetime sentence? I am not complaining, I have the disease, but do not get sick from the needles. Just the exhaustion and stiffness. I am only 61, but my knees feel like I am 81. It scares me when I can’t get up and down from the toilet without holding on to the towel bar. Last week I was on the floor playing with the dog and I couldn’t get up, had to call husband to help. It was like I had no strength left. Is this the RA, or just getting older?
I agree it can be scary. It is probably the RA, Louise. But don’t assume either that it will stay the same as your worst days. There will be ups and downs for most of us. For some, it almost goes away at times.
The mtx is usually taken as long as you can tolerate it – it’s the med with the best track record for this disease – for helping reduce damage. Docs also like it best since it’s usually tolerated well.
A doctor at the Cleveland Clinic suggested taking Leucovorin to help with the major fatigue I get from taking MTX. It does help some. I still get fatigue, but at least I don’t sleep most of the weekend like I used to when I didn’t take Leucovorin. Now I can continue to function even though I’m feeling worn out.
I started on my first injection of Methotrexate last night. My first dose was 3 cc, next week will be .4 cc and the following week will be .5 cc. I started taking the folic acid a few days ago. The only side effect I’ve noticed so far is bad stomach cramps. I’m hoping it subsides today.
Good Morning warriors! I have a MTX question. I have been on MTX since Sept 2012, changed to injections and added Cimzia, in Feb 2013. My RA symptoms have been 80% better for the past month or more. YAY! But today I got a call from my Rhuemy, she said stop the MTX, my liver and kidney enzymes were too high. How scared should I be?? The combination is working so well for the RA, but I do not feel so good. Still very tired etc… Any thoughts?
Hi Kelly and other Fellow Sufferers,
After taking Oral Methotrexate I’m now having to inject Methotrexate.
Like a lot of you I too suffer from side effects… I go hot and cold which is rather annoying when trying to sleep. I also get very lethargic and very down extremely tearful and very snappy. My poor hubby looks to see what my face is like before he opens his mouth bless him he’s got the patience of a saint. I was taking 1 folio acid tab the day after but this didn’t have any effect. So after two years of crying (to myself) when due to inject as I can’t stand the horrendous feelings I get after my RH Nurse suggested I take FA 3 times weekly I’ve just started this so I’m crossing everything, just hope this works as I hate myself at times for the way I speak to my husband. Also the effects it has on my body. After injecting last time I have a red mark on my upper leg which has reduced was the size of £2 coin now slightly smaller, I was wary to inject this morning, and within 10 mins my side was throbbing and yet again a red mark appeared this looks more like a bruise were 1st more like birth mark??? Has any one else experienced this am but worried as never had this till last week!! I’m starting Golimab in couple weeks time has anyone else tried it/on it?? Bit apprehensive about this as was on inflicimab and took bad reaction.
Kelly love this site x
You have a great web site and your faith in methotrexate as a disease modifying treatment has apparently been well placed for yourself and many others.
My own experience with methotrexate was extremely negative. Subsequent to increasing difficulty with RA I had a bad shoulder that was painful on exertion and I was determined not to need surgery for. 6 months of weekly physical therapy sessions, and endless workouts later my shoulder was almost back to full strength and motion, and didn’t hurt any more, but there was continuing progressive damage to other joints and also an enteropathic component to the arthropathy. I tend to be the guy who gets the rare side effect, and I brought it up, so my rheumatologist, who teaches at one of the nations best medical schools, did all the blood work twice before starting me to make sire there werent any liver function anomalies vitamin deficiencies or other known contraindications and had me start methotrexate with 1 pill of the lowest dose available. With some trepidation but more hope for stopping the destruction of my joints I took my first dose the next day..
After that single dose I had a little achiness, a little fatigue, nothing notable, I assumed I’d overdone it the day before with the long drive to/from the doctor, errands in the city, and visiting people there on top of my usual routine. I shouldn’t have. Less than an hour after the second dose began two weeks of excruciating joint pain, high fever, extreme muscle ache, intense debilitating fatigue, etc. Worse than post operatve pain and more widespread, and without anesthetics. I lost 1/3 to 1/2 of my strength everywhere, my shoulder was destroyed, 6 months of PT erased in days, and the other shoulder trending the same way, and my enteropathy was suddenly much worse (GI inflammation and bleeding from the gums all the way to the other end). The acute symptoms subsided on their own, which is good because apparently there’s no specific treatment for methotrexate intolerance beyond supportive care. Another 6 months of physical therapy made no improvement in the shoulder’s range of movement or pain. The only result of arthroscopic surgery (pain and PT aside) was the surgeons advice immediately in post-op that despite his best efforts I wasn’t likely to get much relief from the pain or improved function without joint replacement, but that I shouldn’t have it because I’m too young and too strong so it wouldn’t last more than 5 or 6 years and they can only replace it a couple times and then I’d really be up the creek without a paddle.
Eventually the insurance people were persuaded that a second trial of methotrexate really wouldn’t be appropriate case management and they let the doctor prescribe Humira, or rather they agreed to cover it. The arthritis is pretty much well enough controlled not much recovery, but no more progression of the disease and i have much of my strength back,… but my shoulder is a constantly painful reminder of the damage modern medicines can inflict despite the best precautions and the most cautious and skilled practitioners.
Naturally, because of my own experience I am less enthusiastic about methotrexate than you are. I’ve read enough comments here to understand that you tend to reply to anecdotes with adverse effects with some defense of the rarity of the side effect and the possibility that RA caused the problem attributed to methotrexate, or that the side effect would have been mitigated by taking folic acid. While I too would have expected some protectve effect, I was taking a daily vitamin that contains 400 mcg (100% of RDA) of folic acid. In this instance, there’s really no chance that the underlying disease caused the adverse reaction, this particular side effect is, although not unknown, quite uncommon. The onset of escalating symptoms with each dose points to the causative agent. While I wouldn’t encourage anyone to avoid methotrexate because of my unusual experience, I would urge patients, particularly new patients, to be cautious before dismissing adverse reactions.
I don’t think we dismiss adverse reactions. There are 31 articles on mtx on this site & hundreds of comments, so I hope nothing was taken out of context by mistake. Here’s a page about adverse responses to mtx: https://www.rawarrior.com/unusual-methotrexate-side-effects/
My own experience with mtx should not be assumed either. I have also written about experiencing hair loss, feeling like an elephant kicked my stomach, and other side effects of mtx.
Finally, as I’ve written, treatment decisions are personal. https://www.rawarrior.com/rheumatoid-arthritis-treatment-decisions/ And while I do host this public forum, we must also each respect one another’s choices.
I know this is an old post so maybe no one will see this, but wanted to share my good news in the hope that it might help someone else. I’ve been on injectable MTX (25mg/week) for 8 months and had daily nausea for most of that time. I tried (on doctor’s advice) extra folic acid (10mg/day), changing diet, ginger tea and finally ended up having to reduce the dose of MTX – so it wasn’t working as well, and still had the nausea. The only thing that helped was Gravol and that made me so sleepy! Then my rheumy said he’d seen a conference presentation that suggested Vitamin A might help. Totally experimental, he didn’t even know what dose I should take but said it was worth a try. The pharmacist ordered some for me and two weeks in, the nausea is GONE. It’s super cheap ($2/month) and has NO side effects. May not work for everyone but it did for me!
thanks for the advise Gerda, I will certainly give that a try.
Hi! I love this site but have never posted here before. I am a 42 year old woman and I’ve been diagnosed and undiagnosed with RA over the past couple of years. I certainly do not have a severe case as of yet, and we are trying to figure out if I have RA or OA (I can’t afford the MRI). My first rheumatologist diagnosed me with it about 2 years ago and prescribed oral methotrexate. Then I had to switch to a new rheumy and after redoing my tests and listening to my reports that I really couldn’t tell if the mtx was working or not, she took me off of it about 8 months ago to see what would happen. Over the next several months I began to have the worst hand pain I’d had so far and in addition, I began to feel awful, tired and crappy in general. My back pain elevated, my migraines seemed worse, everything seemed to be bad *most* of the time.
Lately it has been my mission to figure out what is going on and get rid of all of these awful symptoms, so I went back to the rheumy and since I couldn’t get the MRI and since my blood tests still weren’t showing anything significant, she said that she wanted me to try injecting mtx to see if that made anything any better. And I also got back on the daily Folic acid 1,000 mcg.
That was 2 weeks ago. The past 2 weeks I have felt wholly better than I have felt in a very long time. I am full of energy, and I want to exercise and be physically active all of the time which is very odd for me since I have always been much closer to the couch potato end of the spectrum than to the highly active end. I keep thinking it must be the mtx. Is that insane? After reading everything here and other places online, it seems like I must be wrong, but I don’t know what else it could be.
Has anyone ever heard of this happening?
Help! Someone tell me the medications HELP?
They sound as bad as the RA symptoms. I seem to be getting worse every day, but I can still walk; I’m reluctant to take such side-effect causing drugs.
Does methotrexate help?
Thanks, Laura
hi Laura. I’m sorry about how that feels when it seems to be getting worse all the time. It doesn’t stay that way for most people – things level off or improve for a while. So hopefully, that will happen for you. The different medications (including methotrexate) do help most people at least somewhat, and some respond really well. There is no way to know if they will help you unless you try – there is some research to try to identify those more likely to respond to drugs, though.
Side effects do not happen to everyone, and there are usually ways to manage them as well. I’ll paste a link that might help you find more information https://www.rawarrior.com/methotrexate-and-rheumatoid-arthritis/part-6-checklist-manage-methotrexate-side-effects-rheumatoid-arthritis/
Hi:
I do know what you are going through. I was on the methotrexate pills and then to the injections. After taking the injections for about 5 weeks I started to have chills, loss of appetite, fatigue and finally a fever of 103 before I realized I was really sick from one of the “Rare” side effects. I had to be taken off of that immediately and then onto another one leflunomide which only last for about 4 weeks due to high liver enzymes so it’s been rough. But it sounds like you are having some of the “Rare” side effects that comes with the injections. Not sure but check into it anyway, just keep a check for any other symptoms and I hope you get to feeling better soon.
My nurse has me take dm cough syrup the day before and day of the mtx. It does seem to help with the blah feelings and vague stomache problems of the injection. I notice if I don’t take it.
I have Psoriatic Arthritis & take Methatrexate.I started on tablets then changed to injections because of the sickness & just down right ill feeling.I also feel the same as you,It was beginning to take two days out of my week.In the end at my last hospital check up I requested to have it reduced a little due to the side effects & I have felt a lot better since with no effects to my arthritis so far.
I found your post very helpful thank you. Cynthia