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.
OK-the methotrexate side effects you have experienced & wrote about are for me in a simple word: DITTO!
I hate this stuff…but I understand the necessity-hence the marriage illustration is apt. The weekly methotrexate roller coaster ride is NO freaking fun. And once you ‘recover’ from the week’s ride, it’s time to board the train for another episode.
I went from from the tablets to the injection. The injection is ugly. Sticking yourself for health’s sake seems counter intuitive. Anyway-Kelly et al-thanks for sharing.
FYI-I have shared this site with my ‘rheumys’ @ Duke Rheumatology. I hope they read it. Shalom.
new to RA, new to MTX, scared me to try it, but was willing to take a swing. Super thirsty within 12 hours of first dose. Started with FA a few days ahead, took your advice and went to bed after taking MTX. Anyone else feel dry after MTX? Metalic taste too, but was expecting that. I do feel the fog…
I have been reading your post about a year I am thankful for the great info. I have taken mxt for 7 years with humira they worked so well I forgot about how bad it can be I was normal for about 5 years. The drugs are not working and the mxt is making me so sick for 3 to 4 days I vowed never to take it again this was last Tuesday and tomorrow I start actemra I love how u say its a marriage love hate. These posts give me a lot to think about and know that I am not alone. Thank u
I have read of one other person with nodules here. I too have them on elbows and one on under forearm. I know 30% of RA get nodules.
I have a large one on my spine measuring 6″ x 3.
Am reading that Methotrexate makes nodules bigger and can be the cause of nodules in first place ?
Anyone else ?
I need this meds. to help my kidney cancer
are there any foods to avoid when taking menthotrexate? I have 1 cup of coffee and sometimes have a couple of cups of black tea is that ok to do?
Kelly,
I can’t find any methotrexate injectable anywhere in Santa Rosa, CA. Is there another push by the drug co’s. to force us off this medicine? I need answers because I’m due for my treatment and I can’t find the med.
I’m recalling when ZELGENZ came out and the drug co’s slowed production even though they never admitted it in an effort to sell us something else. Nothing else works for me.
Please answer,
Love the post-I myself have the same fight each week with methotrexate. I have bargained with myself (1x) to take a half dose because I was visiting my son and wanted to enjoy our 1 day I had with him in the last 4 months. So that is a partial win?
I so far have always won the fight. Although I did bargain today with my Rheumatologist and we decided to drop the dose to see if the side effects would be less intense. Since I was at the maximum dose recommended for RA (by injection) this means I just dropped to a little bit lower. Hate to do this because my current cocktail of drugs is working!
I have difficulty eating, nausea and the kicked in the stomach by an elephant feeling 2/7 days per week every week. Yes, you have to take methotrexate with the biologics to maintain the activity with them, but you don’t necessarily have to take the big whopping dose. For me-it did seem to get worse with time. I have been on MTX for a year and biologics for 6 mo.
Great as always to read i am not alone.I have been taking methotrexate for 5 years and i have recently had it increased to 15mg orally.I thought i had a stomach bug and then realised it was the small increase that was the culprit. I also was given the wrong dose of folic acid by the chemist, same looking bottle, didn’t look at the dose, close to finishing the bottle, i discovered i was only taking 1mg of folic acid as opposed to 5mg! I was extra tired and as i said stomach upset but i have been taking the right dose for 10 days now and still feel yuk, so i guess it is the increased methotrexate dose.So thanks for everyones tips and i will battle on.
Pain ought to be enough to deal with, i feel like moaning myrtle from Harry Potter at present.
Am I one of the ‘lucky ones?’… nausea is NOT a side effect for me… being wobbly, feeling like I am walking in outer space is another one…. and pain is the third…. I had no effects whatsoever on 10mg, so doc doubled it then WHAMMO……. I hate PILL DAY, and know I will be off the planet for two and a half days at least….. but I am NO BETTER……….. Boo Hoo
2/27/15
This is my second try at mtx. The second try was worse than the first. I was started on 25mg sq once a week. The side effects were on the odd side so I rode the storm until I simply couldn’t deal with it any longer. I had joint pain, increased temp (100) and severe tendinitis. Those were easy to handle compared to the extreme mood swings and depression. My rheumatologist told me in her 8 years of practice she had never experienced anyone who had these symptoms. I felt overwhelmed and defeated and did not know what to do. So, I changed rheumatologist and she tried me on a lower dose of 12mg. Same symptoms but this time add in forgetfulness and anger into the mix. Mtx is simply not an option. I guess I want people out there to know that mood issues do occur with mtx and they can be extreme and severe.
Has anyone tried Otrexup (methotrexate quickpen)?
I have been reading a lot of posts and other information on this page. I have had a very difficult time with finding any kind of support group and though I have read every study I can find on RA and treatments, so much information out there varies or even contradicts others. From what I am seeing here, it seems no one has posted on this site since December of 2014. It is now May 2015, is this forum still active? if so I would very much like to be able to come here and learn what actual patients say and do to help treat their RA.
dear Enola, there are about 27,000 comments here you can learn from other patients’ voices. Please do read even if I am away. Also please feel free to join us on Facebook https://www.facebook.com/arthritiswarrior
I realize this is an older post but thank you for making me feel less insane. I am on a low dose(crazy low according to the pharmacy & most doctors-I believe it’s 2.5 x 4). Maria your symptoms describe me to a tee. I am taking it for RA/scleroderma and am only on week 4 & I can’t seem to handle it. I am hoping I get used to it or at least see some sort of benefit soon! The exhaustion, apathy, inability to focus, depression and tears/emotional outbursts…it’s too much for me & those closest to me. Not trying to complain because I am desperate for relief but taking mtx is making me feel like I am losing my mind. I am not me. Mondays & Tuesdays l sleep through everything. And if I do manage to stay awake then I am in a complete stupor & it’s not just a “fog”. I know many people who sing praise to this medication & it has safely helped them greatly. I understand doctors must weigh the pros and cons when they prescribe these drugs. I just wish my doctors were hearing me instead of making me feel like it’s me & not the medication. I am glad I found your posts and the site because it helps to have as much info as possible. Thank you.
After 7 yrs of complaining about the nausea after taking metho. my rheumy prescribed ondanestron 4 mg tabs. WOW! I wish I’d had that years ago. It has made a really big difference for me.
Hi…new to this and due to start methotrexate…10 pills in one day….im terrified…any tips for taking this dose?
terrified…
Have finally accepted I have RA. Self diagnosed PMR as I tested negative on all tests for RA. I was taking 15mg prednisone for PMR until I needed carpel tunnel surgery and Doc said to stop. Inflamation came back big time. Started back on 20 mg prednisone daily and MTX 15mg a week plus daily Folic 1mg. No question I am losing hair. Used to have it thinned was so thick. Eyelashes diminished as well. No other problems with MTX. Is the hair loss permanent or will it stop falling out eventually. After one week I went to 10mg prednisone daily. Need to get off that stuff as my skin has become very thin. Had an accident that cut a big wound in my shin and thought I was going to bleed to death. The slightest bump and I’m black and blue. Do all RA meds cause hair loss in some?
So I got told at 24 you have RA I’m 26 now and it has been a long road of pain and drug cocktails that don’t work. I have been on methotrexate for almost 2yrs now and it sucks ass everytime I take my 8 2.5mg pills every Thursday. I was put on prednisone for a year and thanks to my first rheumatologist I know have osteopenia. Was on sulfasalazine but not anymore yay me…not really. I take 80mg humira injection pen every two weeks and they hurt more and more. The humira and methotrexate don’t do anything to help I feel worse now than when I was first diagnosed and my hands are starting to look like right angles. I don’t have to worry bout RA killing me…my doctors and these useless drugs are gonna do it for me. Lets hope rheumatologist 4 is smarter than 1,2,&3 cause if she ain’t ill be dead by 30 my body is shutting down and fast
In a weird way I’m glad its not just me that does the weekly bargain with Mtx injections and I’m obviously not as good as you as occasionally I win (?lose) and miss a dose. Not often but some weeks I can’t face the day of feeling crappy. I have tried them at night but I just can’t sleep for the nausea so I would rather have the nausea than be shattered as it makes working impossible, particularly as I usually just feel sick rather than be sick.
I self inject (pen type now) and I wonder, does anyone else experience a really painful burning sensation around the injection site about 30 secs after injecting. It usually passes within a few minutes, though sometimes it lingers for quite a while. It really doesn’t help with my motivation for self injecting.
I also find my weekly enbrel injections incredibly painful whilst injecting (again pen type) and this hurts for several minutes too. I really struggle to push that button as I know what will follow. Maybe I’m one of those RA people with low pain thresholds they talk about (though as I amazed my doctor at my total lack of response to pain when she fitted a coil just before I developed RA, I’m not convinced…)
I’m on oral methotrexate and plaquenil for my RA along with folic acid. I found an OTC called Nauzene, that works really well for nausea, and it works very quickly. Hope it’s as useful for others.
I just switched from methotrexate pills to injectable methotrexate. I’ve had pain in my knees and ankles for over 5 years due to my RA. Pain meds never helped it. The day after my injection my pains were gone. It’s such a relief but I’m exhausted all the time now. Anyone have a tip to give me some energy? I’m taking vitamins and folic acid. Now I’m not in pain but too tired to do anything. Any ideas?
This is my second week of taking the methotrexate injection and I have experienced a headache but it doesn’t last long how long does it usually take for it to start helping with the stiffness and the joints being inflamed
I have tried the pills (methotrexate)and they made me so sick to my stomach that I couldn’t take any of my other medications so I stopped talking it,I went for a month without taking anything but now I am taking the injection and I pray that after it gets into my system it will start helping
I am on week 6 of mtx injections, it is a small dose of 10 mg. very fortunate as I have had zero side effects….but I can really see no improvement either. Newly diagnosed and have been searching for advice and answers. This site seems to have what I have been needing. I return to Dr. Tomorrow so it will be interesting if he will increase dose.
I know people who take this drug w/out a lot of difficulty. Personally, I was unable to use it. After about 6 weeks I became terribly depressed. I really didn’t even want to move off my couch. I thank my friend whose daughter had cancer 🙁 for telling me to get off MTX and see if the “fog” lifted. My doctor told me it was b/c I was told that I have a disease that will never get better. But I knew that wasn’t right, it’s not like me to give up that way. So I listened to my friend, & stopped taking it. Within a week’s time I felt like someone had pulled a paper bag off my head and let the sun back in. Now I take Arava. It gives me miserable stomach problems, but I’m swing through the pain again. Hope nobody else gets this,but I wanted to put it out there. MTX is a chemo drug, in much lower doses then for cancer. But some ppl can still get the side effects.
Methotrexate gave me RA Lung (intersticial lung disease), my prognosis is not good. If I could go back 10 years to my diagnosis, I’d have refused the mxt. that being said! Now that I am no longer on the MTX due to my lung issues, I never realized just how much it helped, and how much more prednisone I now have to take. Sometimes, I feel like I’ve been given a death sentence, yet given the option of how I want it to happen. Methotrexate, damned if you don’t, and possibly damned if you do. Even still, if I could go back, I think I’d have opted out on the mtx. But I didn’t know any better, and my rheumy at the time, didn’t bother to elaborate on the possible long term and life threatening side effects. I wish she had.
Hi Taffy
I just started back in injectable after 14 yrs ago on the pills, pills first thing it did is cause hair loss I stoped n went on embril now I’m in Orencia infusion and just last week the dr added 10 mg of the methaltraxate injection. My question is how long did it take for you to experience the ill effects n did you have hair loss I can deal with everything else but this.
Best of luck n thank you. Laurie
I just got diagnosed with RA this year started MXT injectable with preservative and using TB syringes MXT 10 mg moving to 15 mg next week. Skin all over been a bit itchy comes and goes, felt tired within 24 hrs and 48 hrs later the nausea and vomiting happened a few times. Hoping this is the worst of it ?
I am about to start injectible methotrexate tomorrow along with Humira. I am dreading doing the injection myself – but I have no choice. The whole RA thing stinks!! Enbrel stopped working so now its Humira which hasn’t helped yet.
I have RA and now on Embroil along with methotrexate and folic acid. I seem ok except I am getting several uti’s. Going to dr today again for antibiotic’s to get rid of the urinary track infection. Has anyone experienced this? Is this a side effect of the medication? I really cannot tolerate the urinary track infections and being tired all the time.
My injectible dose was increased and i’m so nauseated I can’t stand it.
Drinking club soda helps somewhat. Ugh – I am also flaring right now. Miserable. Great to read everyone’s thoughts.
Thank you Kelly.
Thank you for that beautuful positive quote.
I’m only on my 3rd week feel so nausea all the time no energy and feel like my fight is slipping.
I sleep 12 hours a day 8 alarm clocks don’t wake me and still feel ghastly.
Rung up nurse today as had enough and she told me to miss the pills for 1 week and to take folic acid every day.
I also suffer with fibromalgia,dysfunctional movement disorder and it has all gone crazy in the last 8 months.
Can walk with stick, pain and jerks
Can’t drive anymore due to jerks and my depression and anxiety obviously situational has gone 10 times worse.
But was told the steroid could make me emotional and mad
I’ve lost all my friends my job my life feels that way anyway
So sorry for going on ????
I’m just desperate xxx
Hi, here is a list, what I tend to do advice my patients to avoid methotrexate sickness. I have enlisted 7 ways how you can reduce sickness with methotrexate. Hope it helps. Best wishes. http://www.arthritisindia.net/7-ways-decrease-methotrexate-sickness-rheumatoid-arthritis/
Hi,
I was diagnosed last year with moderate RA and have been on MTX (injectable 25mg)and Plaquenil only for about 6 months. I was originally prescribed oral 10mg but am now in a clinical trial of the VectraDA blood test, which bumped up the meds, and the new meds have greatly improved my symptoms. (I far prefer the injections too – far fewer side effects).
I have recently had some mild nausea after the injection (from maybe 2 -20 hrs after) and looked at some of the recommendations made here for relief of nausea.
I noticed that there was a recommendation in your advice on MTX for relieving nausea to use chewable Pepto Bismol. I have used it pre-MTX to reduce risk of food borne illness when traveling overseas (it works). I did a little research on its use with MTX. Pepto Bismol is Bismuth Subsalicylate and it is noted on many medical reference sites to have severe interactions with MTX (as in definitely do not mix). Apparently, it impacts the processing of the MTX and can create toxicity-related side effects caused by higher levels of MTX in the bloodstream, even at the lower doses used for RA. (I think the same risk exists with aspirin (4 or more adult per day) which is also a salicylate. Do you have any additional info on this or other recommendations? I think I will skip the Pepto and use ginger tea and candies instead – they taste much nicer too. Thanks!
I was diagnosed with RA in March and on MTX inject. They recently bumped me up to 25mg and I have had a severe headache ever since. I also have absolutely no energy. My doc had me stop the MTX all together for at least a week but my head is still throbbing. I take folic acid as well but nothing is helping.
I also started seeing what looks like bug bites on my arms however they are not bug bites. Perhaps hives? I’m at a loss 🙁
I’ve never heard of hives from mtx but show them to the doc. And take pictures.
My headache can last days or weeks from the inflammation in neck joints due to the RA / RD. If it’s not the med, it could be the RA. It does affect the neck in most people.
Hi Kelly,
I thought I was one of the lucky ones – I’ve started taking 10mg mtx over a year ago and it helped my symptoms, for a while I felt almost normal, no side effects except for more brittle hair. But about 6 months in I started having new symptoms – lots of nerve activation in my legs and arms (zinging down the length of my left leg, at times could barely lift my arm, but because of the nerves, not swollen joints (which I had also had before), a “weak back” which also feels nervy. I assumed this was just RD & the rheum. increased my dose to 12 mg. However I went to a osteopathic visceral manipulation workshop this summer where they did some light work on the kidneys – I felt *immediate* and total relief – felt 100% for 3-4 weeks except for continued shortness of breath. Then the back pain started to creep back, I’ve also realized my body is constantly tense, I can’t relax – wake up at night with my shoulders tense, I can’t sleep well. Could this be a very low-level reaction to the mtx overloading the kidneys? The osteopaths say that stress in the kidneys can cause the connective tissue around them to tighten up, which puts pressure on the nerves in the leg and can affect other organs/tissues… just wondering if anyone else has ever brought this up. I’ve already cut out alcohol and any OTC pain killers, noticed that without thinking about it I’ve greatly reduced the amount of meat in my diet over the last 6 months. Psychologically the tension is related to depressed/weird mood – didn’t answer calls a few days this week which is not normal for me. Pretty sure my rheum will say it’s just the RD, last time I mentioned fatigue she just said I should exercise more (??!! Yeah, that would be great if I could!).
Dear Anne,
This is one of the hardest parts of fighting RD – sorting out the cause of symptoms. It can be very hard to know for sure – you can take tests or try stopping a med to try to prove it’s a cause.
It’s possible the kidneys are the cause as you mention. But in research for my book, I learned the kidneys can be affected by the disease also. And mtx would usually affect the liver.
Shortness of breath sounds like the RD – it can be either lung or CVD related. But it – and the fatigue – could also be anemia or another deficiency, common in RD. Nerve pain can come from the inflammation in the neck or other spine joints, usually not visibly swollen.
Constant tension of soft tissues also makes sense with the RD, and is commonly mentioned by patients. Some take muscle relaxers especially at night.
Do you have another osteopath who can try the same thing that helped you last time?
Final thoughts – it’s possible the 10/12 mg of mtx was enough to help then, but the disease progressed, so now it’s not enough.
Yes i was wondering if im giving my mtx injections right? I gave it im in my thigh last night, first time on injectable as id been on pills for 9 months and extreme nausea the next day. Much less today. Im on.8 mtx once a week. Thanks i just found this site and would love the link to your page please!
Hi Ronda, I have been having IT infections and yeast infections often as well. On MX for 3 years. If you have any suggestions I would appreciate it. Thanks
Hi everyone, My name is Christina and I’m 31-years old. Recently diagnosed with RA in 2017. I finally caved and took my first 6 pills of methotrexate on Monday, a total dose of 15mg. On Thursday I was vomiting and couldn’t hold food down. Today, Saturday, I have a fever of 101.4 with chills and a tingly sensation all over and can barely lift a finger. Is this a normal side effect? It’s the weekend, so my doctor isn’t around. Hope somebody can weigh in! Thanks RA Warriors <3
I have been using MX for almost 2 years not and was wondering if anyone else has the side effects of a rash similar and could be shingles. I was diagnosed with that but never had this happen until I was on methotrexate. Any one else? And if so, did you do anything about it?
I am vinitha from India. My mother is a RA patient and she is on methotrexate and medrol since 8 years. She did well till recently. But about since one year, she is suffering with fever, vomitting, indigestion and other side effects. When consulted MD, he asked to discontinue the tablet Methotrexate. But, it is essential for RA patients. I dont understand what to do now. I am unable to understand how she developed side effects now when she was doing well all these days. Please some one help me
Vinitha,
It is possible that after tolerating the methotrexate for several years, she cannot now.
This medication is also given by injection. She may be able to tolerate a lower dose than before or an injection. Also, it may help to increase folic acid or change the dosing pattern. You can talk to her doctor about these things.
Thank you Kelley for this very informative article about Methotrexate. I have been on the Drug now for over 6 months, and I’ve always been queezy the next day, but lately I’m shaky and weak most of the time. Doesn’t matter if I’ve taken my dose recent, or last week. I’m also taking Enbrel in between battling infections that make me come off the Enbrel until I’m better. Not to mention the scratches and cuts that take an eternity to heal now!! I am getting concerned about the shakiness and weakness. Almost like its an effort to lift my arms, and almost a icy feeling in the veins, but not quite, all the while the stomach is feeling blah. I do drink alot of grapefruit juice, and I’ve read conflicting reports online about MTX and drinking grapefruit. So I don’t know. I’m saving your article and gonna check out your other information here. Thank you a buschel for the information!
Cheers,
A fellow RA warrior
Jim
My daughter followed her heart and moved to Italy to be with her fiancé. She has suffered for years and just recently been diagnosed with RA. Because they live in a fairly remote area her access to medicine is limited. She has connected with a Dr who was trained in France now living in Italy. My fear is because the Dr is not a rheumatologist I worry she is trying drugs and not really fully on point. I admit my fears are heightened because I am a nurse and know a little more than the average person. She has been put on Methotrexate injections daily not weekly which worries me. Now she has terrible mouth sores that are not healing after three rounds of antibiotics. Have you and similar stories? As a mother so far away I really worry she is getting the right help.
I am new to this group and have had RA diagnosed since 2014. I am on plaquenil and MTX from the beginning. My pain is tolerable and comes and goes. I find if I walk on the treadmill everyday I feel better. Frequently have to change my shoes as the disease is in my feet. It has actually been all over. My Dr wants to change me to Arava but I’m reluctant. Had anyone have anything good about it!?? Side effects look awful.
I think the side effects are similar. Some people tolerate one better than the other, but mtx is used most often. Feet are affected in most people so you aren’t along Toni. If you do well with the mtx, maybe talk with the doc about whether your dose could be a higher or you’ve already reached the highest dose (usually 25). Good luck to you.