Unusual Methotrexate Side Effects
Many patients take low enough doses of methotrexate that they don’t even have side effects…
But, some strange methotrexate side effects are for real
No one ever told me methotrexate could have side effects. I’m not complaining! I think that worked for me. I didn’t approach the treatment with fear.
Don’t get me wrong – there was drama. But it was based on other things: Wean your baby. Swallow these pills for the rest of your life. Hope it helps you walk. Give up occasional beer and wine…
Without any fears of methotrexate side effects, I didn’t set myself up for failure. I didn’t have to worry about whether the side effects were partially psychosomatic or not. I was more likely to talk myself out of side effects than into them. And more likely to give the treatment a chance to work.
What are some weird methotrexate side effects?
This is not about the common side effects like nausea and minor hair loss. There are some more odd side effects of methotrexate that have either been described to me or I’ve encountered myself. I have not had all these myself, but the ones that I did have were not until my dose reached the maximum amount for my body mass.
- Metallic taste
- Breast tenderness
- Menstrual changes
- Mood changes
- Lower GI cramping
- Brain fog
- Rashes or blisters
Some methotrexate weird side effects probably aren’t
I don’t think that I’ve ever seen an Oxford Journal abstract titled Weird Methotrexate Side Effects, have you? But patients talk about it. There are plenty of places online where you can find some pretty extreme lists of side effects. Some are more realistic than others.
It can be difficult to isolate which medicine is responsible for which side effect. Often prednisone is to blame. But don’t rule out the Rheumatoid Arthritis itself. Going off of treatment when RA is flaring can make it obvious many problems are actually caused by the RA.
Recommended reading:
- Methotrexate and Rheumatoid Arthritis: Is Alcohol Consumption Safe?
- More common Methotrexate Side Effects
- 7 pages of straight talk on mtx: Methotrexate and Rheumatoid Arthritis
Pingback: Tweets that mention Unusual Methotrexate Side Effects | RA Education | Rheumatoid Arthritis Warrior -- Topsy.com
I thought I was losing my mind when I took Methotrexate. I was just not myself. I couldn’t make a decision, I was depressed and every little thing I did was a major undertaking. The Rheumy doc put me on injections and due to some oversight on her part I ended up doing injections and taking 6 methotrexate pills once a week. It was horrid and it didn’t even help. I kept getting worse, with more inflammmation, more mouth sores and when I would complain she refused to change to something else. Needless to say, I found another Rheumy doc who put me on something else and I felt much better, but still continued to have pain and stiffness. If you can handle it take Methroxate, but if you are having trouble talk to your doc and find something else. I’m just thankful my husband didn’t leave me during the time I was on it.
Wow, Arlene. That is an unusual side effect. I’m glad you figured out you were taking double doses of the mtx! How long did that go on? Did you end up throwing up like a cancer patient? :sick:
I was exactly the same way – totally lost my mind on methotrexate. The irony is that I think it did help my symptoms, but I was suicidally depressed taking it. Even through the worst/longest flares and constant daily pain, I never got depressed before. I stopped the meth, and my mind returned. Yay! Glad it helps a lot of people, but not for me, unfortunately!
After becoming diagnosed with RA in 2005 and being on Methotrexate 15mg for only a few weeks, I started having really strange dark thoughts that seemed to come out of nowhere. I would sit and stare into space, totally fine one minute and then telling my friends I felt like killing myself and didn’t know why the next minute. 3 months later, after I’d seen several psychologists and psychiatrists, I ended up in the mental hospital after a suicide attempt. I never put 2 & 2 together and realized it was the medication UNTIL then. Once I got off the medication, I had 1 more crazy thought and then poof, all mental symptoms were gone. I understand that this medication helps some, but side effects really really really need to be studied and people need to be warned that this COULD happen. Because all my RA doctors (2 of them) insisted that methotrexate doesnt’ case mental issues, I didn’t make this connection soon enough. I will forever have to live with that happened to me, and I will never ever ever take methotrexate again. Not even if it’s my only option.
So sorry Arlene, how terrible for you!
I get the nausea and have sores in my mouth——-not in my mouth yet!
To my other RA Warriors,
During my Remicade infusion this past Monday, another patient told me that you should allow at least 4 days between your MTX and Biologic, or else it will scew the lab results. My Dr. checks my blood before every infusion————so guess my results will be inaccurate. I take my MTX on Sunday nights. Am I the last one to hear this, and is it true?
Beautiful and creative flower, did you do that Kelly?
Connie, I have not heard that about blood tests or separating treatments. Which lab results did she mean?
The flower – yes, it is with methotrexate pills!
Wish my MTX pills had been as pretty as yours! Mine were dark orange – reminded me of one of the meds I was given when I had a miserable UTI – and they colored my urine bright orange!
My rheumy also instructed me to allow several days between mtx and blood draws. I take mtx on fridays or saturdays and will get my blood drawn for testing on thursdays or fridays.
Otherwise liver enzymes may measure farther out of a normal range than they really are.
That is a good idea. I honestly hadn’t heard that. It makes sense.
Dear Lisa,
That’s a new one for me too. I don’t think methotrexate increases the liver enzymes for a few days after you take it. You can take the blood test at any given point of time after taking methotrexate.
The same thing for methotrexate & biologics too. Both can be taken on the same day provided the reports prior to the infusion are normal.
Honestly, I do not recall the specific serum element which my rheumatologist was concerned MIGHT be temporarily altered after each dose of methotrexate. Perhaps since I take the maximum 25mg weekly, this is more of an issue?
All I know with certainty is that she has asked me specifically if I were waiting to have my blood drawn until just before the next dose. This is her recommended protocol and I took it for granted that this was widely accepted.
I trust my rheumatologist. She has always been forward-thinking and even used ultrasound to confirm/make my diagnosis on our first visit. She also told me recently that she pushed the benefits of vitamin D 25-30 years ago when other doctors thought she was a “quack” for it. Now the medical community can’t get enough of vitamin D information.
Anyways, it certainly doesn’t hurt anything to wait for the blood draw. And perhaps the result of those tests could be altered by other medications a patient is taking for other diseases. Just a thought. 🙂
She might be establishing a routine that ensures the results are all comparable – maybe for a paper she is collecting data for?
Thank you! So that is what this constant nasty metallic taste is from. I’ve been going nuts trying to wash it out of my mouth without success.
Steph, should I say youre welcome? LOL :O
Since I am obsessive I always read the patient insert for a newly prescribed medication and I highlight the most common side affects & contra-interactions. I may not remember everything, but it’s easy to re-read if I do have a problem. I also check online since sometimes other effects or warnings are listed. Luckily, I am not overly sensitive to drugs and I try to only use ONE NEW thing (drug or food or activity) at a time so I can quickly figure out what is causing a new symptom. What confuses me are the meds we take for RA that list joint pain or swelling as a side effect – – how in the world would I know if it was the med or a flare? – Teri
Teri, what helpful tips. Thanks. I agree with the one new med at a time – I do that also.
Yes, it can be hard to tell the difference. I have had to go off meds for illness, so I feel pretty sure about distinguishing the side effects from the RA. RA is so bad & so strange, I think we might rather blame a medicine than our own bodies! LOL ;O
Kelly, I wrote in a few wks ago asking about mood changes and mtx. After talking with my doc, I came to the conclusion that it was just the fatigue and nausea from the med making me cranky. I’m now more patient with myself the day after I take it. I try to plan less and even let myself take a nap 🙂 I guess I was having a hard time admitting the fatigue. I’ve spent quite bit of time trying to ignore my symptoms and move past them, I guess it sometimes catches up to me and bites me in the butt. I was afraid to talk with my doc about the side effects… but he was very understanding and helpful. We increased the folic acid and it seems to be helping. Fingers are crossed!!
Hi Kari, I remember you. I had a special friend called “Kari” when I was young. I’m glad you hear you are working through this stuff a bit. It is a lot of adjustment-learn-repeat…
I get quite heavy night sweats and when I am on MTX any coloured bedsheets get bleached where I lay. I have been off MTX for over six months now and no more bleached sheets. but starting again soon.
Good luck Richard.
Started on MTX again and first week on 15mg feeling sick all the time until the next jab (on 5mg Folic Acid as well). Second week, three days of feeling sick followed by intense tiredness for the rest of the week. Week three, realised about 20 mins after the jab that something was not right. Hot flush arrived (nothing unusual about that), then shaking, followed by muscle spasms and intermittently loosing the ability to talk !. Trip to Hospital followed…. Thank goodness things have got better although I am not 100% yet and have a appointment with my Doctor tomorrow. The rash that appeared seems to have cleared as well.
Richard, I’ve never heard a story like that before. What are they saying? Do they think you better stay away from that treatment?
I’ll update you further tomorrow after my visit to the Doctor. I have managed to track down some info which does list what happened to me as rare side effects.
Saw the Doctor yesterday and having a week off, then starting back on 5mg for a couple of weeks then up to 10 as a maximum to see how I go. Called at a chemists and was given a sheet of information from one Manufacturer, which again lists what happened to me in the rare symptoms section. One thing to check is that you know what to do and where to go if you suspect you are having side effects as I was not impressed with the Hospital staff I saw. Also note as well that these can appear to happen at any time during your treatment, not just the first time you take it like one Doctor I saw at the Hospital said it would, research later shows otherwise.
True that side effects can start at any time. Good point. They can also go away (be temporary), depending on the medicine. That’s been true for me with mtx. I hope you are doing better. Doesn’t surprise me hospital staff didn’t know about RA / medicine side effects.
Just a final update on my problems with Methotrexate. After further discussion with the Nursing staff and my Doctor who suggested an initial 5mg up to a maximum of 10mg it has been decided to discontinue and try an alternative option.
I had a similar reaction one night after I injected my 20mg MTX. Later, I remembered the site bled a lot. I concluded some of the fluid might have gotten directly into my bloodstream in a small, but significant, bolus. Since then, I’ve made sure I press firmly on the site for a good 10 minutes, then put a tight bandage on it. Haven’t had that reaction since. But I still inject in the late evenings – that way if I react, I can just go to bed and sleep it off.
We all cope differently…
Cheerio!
Elizabeth
Kelly – I have a friend whose daughter had a childhood cancer (Wilm’s Tumor, I think). She was on high chemo doses and had all the usual problems (hair loss, mouth and recto-anal sores, probably vaginal sores, but 2 year olds have difficulty calling attention there). My friend did a lot of research and put her daughter on a regimen that reduced or “cured” her sores. I share it here to help others. And, yes, I follow a modified version of it, myself.
ChemotherapyDiet
Diet to reduce mouth and diaper area sores:
“Vitamins A, all the Bs, C, and E, and also [the minerals] chromium and zinc are crucial to maintaining skin health and healing. I don’t think that I forgot one….. that’s what I remember. DD was at her most able to eat at breakfast time, so I decided that if she was only going to eat one meal a day at breakfast, I’d pack it as full of nutrition as I could, making sure to give her big doses of the vitamins I listed above.
“Therefore, I made her oatmeal every single morning, cooked VERY creamy. I think I cooked her 1/3 cup of oatmeal, using milk to cook it.
“I also used to whiz a carrot, dried apricots and mangoes to mush in the processor and add about 1/4 cup, maybe a little less, while cooking. Once it was super smooth and creamy, I’d add 1/3 cup of whole dry milk, a couple of spoons of vanilla flavored soy protein powder, the same amount of nutritional yeast, one pulverized vitamin C tablet, and enough sugar or blackstrap molasses to make it palatable. This filled an adult sized soup bowl, and she would eat most of it most days, with relish. it didn’t taste bad, actually. I kind of liked it. Most days, this was all that she ate.
“On this diet, she maintained her weight – if she had lost just one more percent of her weight, she would have had to get a feeding tube, and that would have not worked – she had already pulled out two at the time of her initial surgery. Also, after a month or a little more, her mouth sores almost went away, and her diaper area did not look like a pizza any more.
“I [also] used to whiz organic blanched almonds with the dried fruit, too. And, I used to put one pat of butter into the hot cereal.
“Everything was organic. I fed her only organic food at that point in time.”
My modifications: I do eat 3/4 c of oatmeal – creamy – every day. I don’t make it with milk, or add fruit or the pills – I make it with water. I take Vit C, extra Vit B, 5 mg Folic Acid (3 in am, 2 in pm), 60 mg Zinc twice a day, 500 mg L-Lysine twice a day. After the first few MTX doses when I was taking 2 mg of Folic Acid a day, I DID have mouth sores, I started this regimen, and haven’t had a mouth sore since.
It didn’t occur to me that the constant metallic taste in my mouth is caused by methotrexate. Thanks!
I had a horrible time with mouth sores when I first began taking methotrexate. It was a miserable situation…there were stretches of days when I couldn’t eat at all, and had to settle for drinking Instant Breakfast through a straw. In April, I upped my folic acid intake to 2,400 mcg per day. I also use Listerine Essential Care toothpaste instead of Aim or Crest, and I rinse my mouth after every meal with Listerine. I cut potato chips from my diet {sob!} because they’re sharp, and it seems like any tiny cut leads to a sore. It’s amazing; I haven’t had a mouth or tongue sore since! Maybe this will work for some of you, too.
Thanks for the good tips, Laura. 🙂
To others reading about the taste side effect: With all of the yuckiness from the mtx, it at least helps me to be able to eat at all. The jaw RA can make that impossible.
How do you control the diarrhea that comes with methotrexate?? I take Folic acid everyday 3 pills. I inject the methotrexate once aweek and end up with diarrhea off and on most of the week. Will hit without warning sometimes after a meal doesn’t matter what I eat. Will last for a few hours then it is over with until the next day. I don’t know which is worse the pain or the diarrhea. Hard to have a normal day with either.
Pam, personally, I head it off most times this way – at the slightest queasiness, I take a pepto bismol & arm myself with more. (The box says you can take up to 16 a day.) Usually if I stop it right away that helps. I know people who use prescriptions like phenergan, also if otc is not sufficient. In your case, I hope you talk it over with the doc since it sounds pretty severe. Did you read over the folic acid versus folinic acid thing? Some people require more than others to tolerate the mtx. Also, for me the side effects come & go. let’s hope they go!!
Hi there, I take 1x motillium (prescribed anti-nausea pill),3x a day on the day of my jab (fridays), and the same again on the saturday and this seems for the most part to quell the nausea, I don’t know if this would conteract the diahorrea though.
Dear Kelly,
Nice one! (as is always the case…)
Brain fog is a weird but a not so uncommon side effect of methotrexate.
One more weird side effect of methotrexate is the occasional worsening of joint pain on taking methotrexate. This may not be the case with the first few doses but can happen even later with every dose. So, once the weekly dose of methotrexate is taken, the joint pain worsens for 1-2 days & then settles! The only solution in that case is to stop methotrexate & start some other DMARD.
This is not really mentioned in most of the books, but there are quite a few RAers who complain about it.
I would be happy if someone who has experienced this would share his/ her experience here.
Wow, that is unusual. Can you think of the reason why that would happen?
This “association” has just been slowly “gelling” in my mind, more recently, but probably over the last 3 years at least and I’ve been on MTX for over ten years.
The beneficial effects seemed to last from weekday to the next weekday that I took it until about three years ago. Then it seemed the benefical effect was wearing off a while before the next week’s dose was due. I don’t know if this was my disease slowly becoming more active, so we increased the dose, but still the effect was not lasting as long as it used to, so then started thinking perhaps I’ve started building tolerance, or becoming a bit “immune” to it’s effects. But I did start finally noticing that I still had RA effects the day after taking it also, as you said Doctor. This would pretty much ruin my weekend. So I recently started trying to switch my MTX day to a day or two before my weekends, in order to try to feel better for my full weekend. It’s only very recently that I’ve done this and can’t say for sure yet if it might work.
It may be that some of us are just much slower metabolizers of the drug via various pathways (liver, kidneys, gut transit time), and it might be that other, even apparently unrelated digestive problems developed along the way may cause that effect with later doses. It is certainly worth several studies looking at it from various angles.
I have recently started MTX and noticed an increase in joint pain/muscle pain the day after. I take MTX at night while I am completely asymptomatic and wake up hurting much more in the joints that are affecting me-knees, hips, shoulders, feet, ribs (costochondritis). This is week 5 of MTX at 17.5 mg (first 4 weeks were at 10 mg). It has occurred every week with the only amelioration to the pain being low dose prednisone.
I hurt for 1-2 days and then it calms down until I have to take MTX and repeat the cycle.
I mentioned this to my rheumatologist who made no comment on the validity of this observation or if they had noticed this in other patients.
I would like to hear from other people with this experience, what they did, and if these adjustments worked as it is difficult already to take a drug for one problem (joint pain and swelling), only for it to serve to aggravate that problem.
I must add that I am a bit of a diagnostic conundrum–I show multiple autoantibodies in high titers along with +anti-ccp and rheumatoid factor as well as ANA. I have been told I have an inflammatory arthritis that may or may not be RA given the more predominant large joint involvement. I did have a period where I met criteria for RA, followed by lupus, and then followed by polymyositis. All my symptoms go away with prednisone. I at the moment have pain and swelling in my knees, hips, shoulders, wrists, and right sided costrochondritis. I have tried every single natural remedy without relief (dietary changes, food intolerance testing, elimination diet, supplements, tumeric, fish oil, enzymes, garlic, ginger, homeopathy, acupuncture, ldn) and have decided to give a DMARD a try.
(btw….I am graduating from medical school in a few weeks)
Dear Dr. Akerkar,
I have been on 7.5 MTX together with Plaquenil once a day for more than three months. Large joints are under control now, but my hands and feet are getting worse and worse. What do you think?
I´ll give you yet another weirdo to wonder about.
Normally we rheumatologists don´t talk much about sexual drive (libido), that´s more the field for the psychiatrist, psychologist, or also the endocrinologist. But I encountered a few men among my patients being treated with methotrexate for rheumatoid arthritis, who complaint about a dwindling of their sexual desires, leading to maritial problem. With one patient adding/adjusting folate was sufficient, but in two patients we hat to change the medication.
We can only speculate about the dark figure… 😀
Very interesting stuff, doc. And very interesting that they told you. And that you believed them.
Thanks as always for your contribution to the conversation.
I never read about any brain fog, but I definitely experience it on Thursdays about an hour after I take the Methotrexate. I’ve told my co-workers twice now, and now I’ve read it here. Amazing.
Haha. Hi Cindi, well reading it here does not make it so, but if you and others are having the same experience, it’s good to know you are not alone. It is that “I knew I was not crazy” feeling. 😀
Has anyone had respiratory problems with RA meds? Several I’ve tried lead to bronchitis. I tried Methotrexate four times. After three weeks, I’d have bronochitis. Now taking something else.
yes… it made my asthma worse. Folic acid can cause bronchspasms too.
Yes, after taking it for a year I got fibrosis of the lung. It was horrible I had pneumonia 3 times in less than 6 months and it got to the point where it was so difficult to breathe that I couldn’t sleep. After stopping the medication I can breathe better and sleep, but it ultimately scared my lung and now have a 60% function.
Hi Kelly/ Dr Akerkar.. I have experienced some occasional worsening of joint pain/malaise/flu symptoms usually a day or two after taking MTX..I thought it maybe because i had been over doing it, but now am wondering if it was the MTX.
My doctor has raised the level to 20 mg but didn’t say whether i should also raise the Folic Acid? I take 5 mg twice a week, so thought maybe this had something to do with the unwellness/extra pain.. Can the Folic Acid go up anymore as i had read somewhere that it can counteract with the MTX?
I am generally getting on pretty well with the MTX and determined to MAKE IT WORK!!
Thanks x
I am certain that I have it, but please explain “Brain fog’
THANKS A BUNCH.
Vern
I am grateful for your statement about worsening joint pain on methotrexate. That is my experience. I take 15mg per week. This week will be my twelfth dose. Approximately three hours after ingestion, I can barely move. It feels as though every joint in my body has locked up and is on fire internally. I feel brittle; as though I will break if anyone touches me in the slightest. I cry a lot because there is nothing I can do. It lasts through the night and most of the following day, and then gradually lifts.
It is quite difficult, but the effects the remainder of the week are amazing. I can now walk around the block with some assistance from my husband, and am able to have one or two almost “normal” days at the end of the cycle. Even with the increased joint pain after taking the MTX, the way I feel now is amazing compared to pre-MTX. I have chosen to stay on it and have 1-2 tough days a week, rather than not being on it and having 7 tough days a week.
Does anyone else have short term memory loss taking methotrexate?? I have been having an awful time with memory loss the last few months. My RA doctor told me to stop taking the metho for a few weeks and see if that is the culprit. If it is she wants to put me on plaquenil (spelling).Of which I’m not to sure I want to take. My regular doctor, who I think at one time must have worked with a Rhuematologist said some people have short term memory loss as a part of RA. So was wondering if anyone else has this trouble and if anyone takes the plaquenil, how do you like it? And does it help?
Thanks,
Tammy
I’m not sure if I have short term memory loss exactly, but I definitely have trouble juggling the things. I have always been very good at managing my patients and the paper work that goes along with hospice. However, it seems like I am always forgeting something lately. I forget to order meds, or forget to file reports. Today I was sitting at the office for an hour trying to remember why I even thought I needed an office day before I remembered what I needed to get done. I thing for me, istead of short term memory loss, I would call it a lack of focus. I’m just not sure if it’s from the mtx or from being in pain anf facing life with RA. I guess the only way to be sure would be to stop the mtx?
I have had a lot of problems with short term memory loss after taking MTX/and being dx with RA. I’ve had some people tell me it’s the disease, and some say it’s the mtx. It doesn’t really matter to me as the mtx works good for me. Off the mtx I can’t even get out of bed and go to the bathroom by myself. Because of the memory problems and physical disabilities, I’ve had to quit my 35+ year career as a nurse and go on disability. I have to write everything I need to remember down. My family gets frustrated with me because they tell me things and I swear they never told me. I’m only 56 years old and have always been sharp as a tack, and very organized. Not anymore! Sometimes I feel like I’m going crazy.
Hi, Tammy, I’ve been on Mtx. for SOOO many years (about as long as it’s been available with a short time off and also on Plaquenil most of those years), that it’s hard to remember! (Punny, huh?) But seriously, even together they were not enough, so my cocktail of RA drugs now include Enbrel and low doses of prednisone and Mobic, as well as those two, but I have very few flares and am really saved from having to spend my last decade or two in a wheelchair (I’m almost 78 and have been on Enbrel for 10 years). I take 1 milligram of folic acid daily and have no reaction of any kind to the mtx, as long as I do that. Can’t help you with the brain fog question–how would I know if it was that or just old age? LOL My daughter has lupus and fibro and has a terrible time with brain fog.
Hi Tammy, I take MTX (pills) and have been ever since I was diagnosed with RA in 2008. I really haven’t had any side effects (that I’m aware of) except for the past 6 months or so… the short term memory loss. I couldn’t figure what else could cause it (besides the usual stressors) so I asked my Rheum about it and she said RA nor the meds typically cause it… but I’ve heard of others with RA with this problem. She asked if I’ve been tested for sleep apnea, I hadn’t so she had me do that. I have mild-obstructive sleep apnea which does cause memory loss (among other things) but can go away with treatment. Sorry I don’t have a better answer but I’m still curious about the subject so I’m talking to my Rheum again about it when I see her this month. Take care! 🙂
I had horrible calf pain while on mtx. It started AFTER I started 25mg injectable mtx. I would wrap my legs in ice packs to try and sleep! I would say some night it was a 10 out of 10 for pain! : ( I complained to rheumi, she told me to go to my regular doctor. I mentioned the pain started a few weeks after starting mtx injections. No, she said, that wasn’t the problem with my calves. Went to regular doctor. He said ask my rheumi (feel the run around here?) Had to stop mtx because of wretched nausea and not getting any relief after 8 months on mtx. After two weeks off mtx, I noticed that my leg pain was a lot more tolerable. After 4 weeks off of mtx leg pain gone. Hmmmm….I see a pattern here…hmm… : )
Jacqueline, You just helped me so much. I have never had calf pain like this before. I was blaming it on my knees (which Dr. says is Osteoarthritis-not Rheumatoid), but never had a problem before MTX! I hate MTX so much, I am going to go back to the Plaquinel and Sulfazine and forget it. If the R/A pain and damage comes back in a huge flare, maybe I will try it again. This will be the 2nd time I quit taking it.
Thanks to all for the responses.
Dee-This is me to a T. Didn’t know what else to call it expect memory loss. + I do weird things.The other day I went to empty the coffee filter into the trash and luckily looked down because I was just about to pour a brand new large can of coffee in the trash!!! Hubby would have never forgave me. LOL I can never remember where I leave my dishcloth. I have found it in the freezer, behind the milk in the fridge,etc. etc. + like you I sometimes have to sit for a long period of time to try and remember one thing.I read the Bible a lot and before could always remember book, chapter, and verse. Now I’m lucky if I can recall the book or chapter.Never can recall the verse. It is very aggravating.
I have been reading since I was 5 years old,(now 49). I am a HUGH fan of reading. A couple years after reading a book, if I picked it up again I could remember what it was about so would not want to read it again. Now I don’t have that problem. Told dear hubby that I may save him a lot of money as now I can just read and reread what I have. LOL LOL.I am die hard Stephen King fan and have all of his books except 2,so that can keep me going for many years to come.
I had told my reg. doctor the other day about the memory problems. He was the one who told me it was probably from the RA and not the meds.And if so it was permanent. I told him well, I guess I will just wake up in a new world every day. HEHEHE.
I have been taking the mtx for almost a year now, and still sick for 1 to 2 days every time I take it.From reading about the paquenil ,the trouble with it is eye problems. So I guess I am up in the air about which to take until I see if the mtx is the problem. I just stopped taking it this past week.
Thanks again to all,
Tammy
I have been experiencing some short term memory loss and am not on mtx. I was thinking maybe it was the muscle relaxers that I take (24/7) because i don’t seem to have any other side effect to them (fatigue, muscle weakness, etc). I am very easily distracted and forget what I was doing just 5 minutes ago. Now I wonder if it is the RA….
I had problems with it a few years ago and it was low thyroid. Always something good to look into since it’s so common with RA. ?
Thanks, I had lots of thyroid related symptoms back in the spring and my blood work was fine. My pcp did say we needed to keep our eye on it though. I’ll give him a call.
My longggg experience (30 yrs) with thyroid disease says a regular TSH can look “fine” to one doc, but another might think it should be lower. Or that a high sensivity test or a T-4 or a T3 test would help too. Good luck!!
One Dr. says (looking at the same test results) that my thyroid is low and the other says it is in the normal range. What should I do? I have too many symptoms to ignore it.
If you think you have thyroid symptoms, I’d find a good endocrinologist. Low thyroid is not as easy as some make it out to be… a good endo doc will test not only the TSH, but also T3 and T4 levels. Some people have a normal range TSH, because the T4 replacement (medicine like Synthroid) is adequate to suppress the TSH… yet when the T3 is tested, it’s low. They can be supplemented separately. Very small changes in medication can make a huge difference in a patient’s symptoms. A good endo doc will work with a patient until the numbers look ok and the person feels better.
Those do sound strange. Are you SURE you’re not overdosing somehow with the injection? Are you sure you don’t have any of the vials that have been recalled for glass shards in them?
I just started back on mtx (injections this time) and am only on .4mils/week and I’ve had 2 shots so far. I have started having nightmares. I have woke up crying or (hoarsely) screaming twice in the last couple of weeks. I’ve always had very vivid dreams, in color, and some that come true. I’ve had nightmares since I was a kid, but I haven’t had them this bad in quite a few years. I don’t like it. And there are a couple of other people who’ve discussed this on the FB warrior page. I haven’t read all the comments here, but I didn’t see this one in the list. Just thought I would post here. I hope they don’t get worse as the dose is increased or I will have to stop. I cannot go back to sleep after I wake from one of these. I wake up terrified, and THAT is a foreign emotion to me. I DON’T like it!!!!!
Raini
yikes!
I am researching dreams and Methotrexate. I have had to increase my dose because I cannot get Actimera now due to a breakdown in the supply chain. I live in Kazakhstan and the borders are closed. We expect to see Actimera by the end of May 2020. I find that my dreams are very vivid now, and I remember them when I wake up. These usually are related to past work or looking for an apartment, times of stress. I can usually fall back asleep, but I find the dreams and being able to remember them is an asset.
However, I don’t know if these dreams are due to a slight increase in Methotrexate or a reduction in Actimera or more than two months of semi-isolation.
Oh and thanks Kelly for all you do!!!
I was diagnosed with interstitial lung disease in March 2011. In 2 different hospitals for 11 days and also had bacterial pneumonia. Doctors thought it was caused by the methotrexate that I had taken for 4 months. Now the rheumatologist and pulmonologist think it was caused by the RA itself. I take 20 mg of predisone. More than that and it causes fainting, eye problems and inability to care for myself. I’m also on 5 liters of oxygen. Has anyone had this problem and what happened?
Sharon, I’m sorry to hear about your experience. You might want to consider joining the following web forum for folks with interstial lung disease (there are many subtypes of ILD):
http://www.huff-n-puff.net/newforum/index.php
One thing you should do is get copies of all your chest xrays, cat scan reports and pulmonary function tests. Use help from the above forum to begin understanding the terms used in those reports. Knowledge of not only your RA and ILD in addition to the medications used to treat them will be your best “defense”. You also need to make sure you get a pulmonologist who specializes in treating ILD patients, and preferrably a rheumatologist who has some familiarity with treating it also. You need to learn as much as you possibly can so that you can make the best possible decisions regarding which treatment roads to take. At this point your ILD cause is not exactly determined and that might make a bit of a difference in how to treat the lung problem. If you can get second or third opinions under your insurance you should seriously consider doing that also. National Jewish in Colorado is an excellent place for those who might have ILD related to an autoimmune condition. Mayo Clinic is another. Emory in Atlanta. But you need to educate yourself first on some of the basics so you will begin learning what questions to ask in the first place.
I’ve not heard of your symptoms from what is a somewhat low dose of prednisone before, though I suppose it can happen, especially if you have other comorbidities. Are you older or younger? On other non-RA medications?
I have every side effect listed except blisters and menstrual changes (I am post menopausal). The metallic taste is horrid. I have diarrhea daily. Nothing tastes good. I am almost more sick of the side effects than the disease.
Dianne, I’m not sure what you’ve already tried. that sounds awful. 🙁 Has your doctor already tried changing to injections or splitting your dose onto two days or changing your folic acid/or folinic acid supplement? Here are 2 links that might help – along w/the comments – to think of every option. So sorry. Also, it is sometimes possible to lower the dose and still have some benefits, if necessary. Hope something helps soon.
https://www.rawarrior.com/methotrexate-and-rheumatoid-arthritis/part-6-checklist-manage-methotrexate-side-effects-rheumatoid-arthritis/
https://www.rawarrior.com/folic-acid-with-methotrexate-the-debate/
Thank you Kelly, I will research the links. I am taking 1 mg folic acid a day. Not sure if that should increase or not. I am just so tired of feeling sick and my legs not working. I think I just hate MTX and all its side effects. Really trying to rethink which is worse……..Memory loss, calf pain, nausea, metallic taste, diarrhea, etc etc, I could go on forever. I hate being alone, but I am seriously thinking of trying for SSDI, because getting to and doing my job has become so hard.
After taking my methotrexate tabs 15mg Fridays after evening meal, I have a severe headache within 1-2 hours and end up going to sleep. Saturday morning still have bad headaches and now stay in bed most of the morning and after lunch rest on the sofa. These tabs wipe my weekends out and I have a constant niggly headache until I start the next dose again. I am on folic acid but that just stops sickness and ulcers.Thanks Kelly so much for your site, time and effort. I have not found any sites like yours in the U.K
Hi Jacqui, I know we have some different terms for things, but this site is without borders!!
Have you asked about increasing the folic acid? I don’t know how much you take but it sometimes helps. I hope they are taking good care of you on saturdays meanwhile. 🙂
Thanks Kelly,I am on 5mg per day – not taken on mtx day. I see my consulant in April so will see what he comes up with. Oh yes, is it normal for R.A.D in the rib joints? It can be very painful.
It is a very common symptom Jacqui. And I think that is about the highest dose of FA. But some take folinic acid instead so you can ask about that. Good luck!
im 25 and have been on this medication for about 7 months…. i get sick, tired, lose my hair, i want to sleep all the time, alot of the time i dont wanna eat and im only on 3 tablets a week…. ive now started getting the sensative chest and the blisters, im constantly getting chest infections lasting over a month at a time.. i catch everything.
its wierd how i take the medication to make me better but shuts down my system so im constantly ill 🙁
I have a bunch of pin-prick size blisters, mostly on my hands but have one on a toe right now. Some look like tiny red threads under my skin and others are small “normal” blisters. I only realized these were blisters because they hurt like a blister when I run something over them. I also get larger normal blisters from physical activities very easily, my skin simply feels weaker than it did prior to MTX. This started within the first few doses at 7.5mg and hasn’t changed at 25mgs.
They may be the methotrexate nodules / blisters. Which is of course very different from the Rheumatoid nodules. The mtx ones are small and very painful. I don’t know how they are supposed to be dealt with but I was getting tons of them for a while and I would pull them apart with a pin and apply antiseptic / antibiotic topical. Eventually they stopped, just like my hair loss. Maybe you could ask the doc about an increase in folic acid or change t folinic acid. There is a post about that if you search. Also, if it continues, you could show it to a derm doc to see if they recognize it.
“Weak skin” is of course usually more linked to prednisone/steroids & I can’t remember if you’re taking that.. Good luck.
I guess I should add why I did what I did. The mtx blisters would hurt for weeks. But if I “treated” them, they would be gone in a day. So I learned from my experience what worked for me. Making me able to type sooner, etc.
Hi Kelly, to the best of my knowledge I do not have any Rhuematoid nodules and yes I’m on 5mg of prednisone starting about two months ago. The “wear skin” was most noticable since then, but that was also about the time I started to do more things as the prednisone made me feel better. I’ve always left the little blisters alone as I figured I didn’t want to chance infection or just make it more sore, though I have popped plenty of blisters in the past.
I made mention of the blisters to my RD last visit and he looked but didn’t really say anything about them. That is the only side effect I have (that I have noticed) from the MTX so I had thought of upping the folic acid, I’m on 1mg per day, everyday.
that’s the minimal folic dose and works for some, but when your mtx dose goes up, many of us go higher w/ the folic. The blisters will hopefully stop, but the FA may help so I’d ask about it. Of course I wasn’t recommending the procedure I used! 🙂 Mine were just really painful as I’ve also seen a couple of people say on Facebook. I hesitate to admit I broke the skin on purpose, but it worked for me.
Your pred dose is low but I might still blame that for weak skin instead of mtx – just by the observing I’ve done.
Have a good day.
i rmemeber, 1 of the many pill i took was mtx. it gave me little relief. that relief though brief was really precious. but after a while, my body adjusted and the usual realif time span was slowly cut shorter and shorter as days pass by until i cant get any relief at all. my rheumy doc was so amazed in disbelief taht everytime i wenttosee her ill present a new problem or a more complicated issue arising from the last one. i think it’s mtx that totally killed my appetite. mealtime had become a burden. the feeling of pain was horrible. i would force myselt to atleast consume 3spoonfuls of food but i would eventually throwup after a while. i developed a withdrawal syndrome when advised to wean from it. what a misserable period it was!
I have taken two once a week doses of Methotrexate at 5.0 mg each. Tomorrow, Wednesday I start taking 7.5mg. I seem to feel the medicine is making me cold. Not on the outside but inside my body. Does anyone else have this feeling? It’s weird.
Thanks.
Methotrexate can be extremely dangerous especially after 3 years of continuous use as it can deplete the immune system to 0. Same as Arava. So make sure you read and absorb all the adverse effects…..particularly the RARE effects.
Thing is though we with RA need to take something to halt the Rheumatoid. If we don’t take something we may be ‘eaten’ alive by the Rheumatoid instead.
Horrid stituation and I thank Kelly for approaching governments and insisting we get better and more specific RHEUMATOID drugs (not something primarily for cancer and other diseases) !
I am now taking my 3rd dose of 6 pills once a week. I am sick for 3 days and dragging the next 4. Just when I think I am feeling better, I have to take them again. It is very difficult to swallow something that you know is going to make you sick. I have had a cough since I started! Don’t go back to the doctor for my return visit until 6/18. Worried about the cough, losing my hair but my swelling and pain have improved with methotrexate. I can type at work without wanting to cry. Still ache and stiffness persists. What else can you do? I am 62 and have 4 grandchildren and I like to play all games…dodge ball, jump rope contests, golf, hopscotch, all that ended a few months ago. I played dodge ball the other day…loved it! Getting my “play time” back with my babies is priceless to me so I will take this to have “quality of life” even if it limits my “quantity of life”!!!
Hang in there…it may take a couple of months for you to get the full effect and by then the side effects may get better/easier. If it doesn’t, ask your rheumy if you can take those 6 pills twice a week, on two different days, a few days apart. That’s what I did and I can handle it better…now I just get a little queasy and tired for a few hours…my RA friends and I call it the “hangover”.
Susan, folic acid helped me quite a bit with the nausea and hair falling out. The levels of folic acid are higher than what you can buy over the counter, so call your doctor and ask for a prescription. I would discuss your cough with your doctor. I have been taking methotrexate for about 8-9 months and do not have nausea anymore. I also started taking a biologic about 6 months ago. Methotrexate and the biologic made a Huge difference for me. I stood on my tip toes and did a small hop recently for the first time in a year. I would not want to do that all the time, but I also did not fall down in pain either. Hooray!!
I have been taking MTX for almost a year now. At first, I didn’t have many side effects, but gradually, I started noticing mood swings. Now, I am often quite depressed the day before my weekly dose. My doc is scaling back the MTX (despite me saying my joints hurt everyday). The week when I start the lower dose is just terrible, mentally. I don’t trust my doc to deal with any kind of mental issues; I don’t really trust him to deal with the RA. However, he is the only English speaking doc I know close by. Is there anything I can do to help with the depression? I am losing myself to this.
I was started on Methotrexate about six months ago and was up to the full dose of 20mg. per week. I was having no side effects and doing pretty well. Then gradually over about 3-4 weeks I began to have shortness of breath. This was very insidious and I really didn’t notice it much. Then it became worse and I was feeling really tired for several days. Then I developed body aches, chills and fever. There was also intermittently facial flushing. I ended up the the hospital with interstitial lung disease and requiring oxygen. Needless to say when I developed the fevers my Dr. took me off the methotrexate. Turns out after four days in the hospital and large doses of Medrol it was determined this was caused by the methotrexate. I am now weaning off the steroids and my CT scan has cleared up and labs are coming back normal. I don’t know what I will do after I wean off the steroids right now I am afraid to take any medication for my rheumatoid disease.
When I started Methotrexate for my RA, in 2010, I was sick 24/7 for most of the week that followed. By the time I got back on my feet, it was time to take another dose & it started over again. The doctor added Folic Acid. Finally, after 8 weeks, I actually had a dose with no nausea & no vomiting. Fatigue is still an issue, but fatigue is tolerable (jammies, blanket & recliner).
I went for months in this state of grace. The rheumatologist told me that my RA was in a “clinical remission” (whatever that actually is).
I do whatever I want to do, 6 days a week. Methotrexate day was just a sleepy inconvenience. I walk my dog 4-8 blocks each day. I feel good. No swelling. No joint pain. No aching or low-grade fever. It was like I didn’t have RA.
About 6 weeks ago, the adverse side-effects returned when I took the Methotrexate. Obviously, Folic Acid wasn’t going to handle the problem (I was still on it). I vomited 15 times in 20 hours. The first prescribed med for the nausea/vomiting didn’t phase me. The doctor felt certain that I’d picked-up “a bug”, despite lacking any other symptoms. The second prescribed med managed to stop the vomiting, but (6 weeks later) I’m still struggling with nausea.
My blood-work showed that my RF factor was still low. I haven’t caught “a bug”. Obviously, after all this time, I’m struggling with Methotrexate again. Has anyone else had this dilemma?
Hi there Kelly
I was diagnosed about two years ago and have been on the Methotrexate, folic acid and plasmoquine since then. Although I dont have much side effects, I would like to give my body a break and stop taking all meds. Do you think it is a good idea. Is there a possibility that my RA could flare up again?
Dear Marilla, I’ve gotten a couple of emails recently that are similar to your question. I’ll answer it more fully in a blog post soon, so please stay tuned.
The answer is that it’s up to you what you do with your body – honestly – and we need to examine the risks & benefits (comparing how the medicine helps you to what side effects you have for example) to decide what’s best for us.
Interesting as no one seems to have my side effects. I have been on MTX for PsA for about 16 months now. I started on the tabs working up to my current dose of 20mg weekly. I recall the first week on 5mg about 20 mins after taking it, I felt really weird. I can only imagine its something like what taking recreational drugs is like, like I wasn’t fully in touch with reality, and very unpleasant, quite nauseous. However the key side effect was despite being tired I was totally unable to sleep for that night. Each week improved but then it worsened again as the dose increased, got better, then worse again with the next dose increase. After about 5 months it was “tolerable”. And for a few months I was able to get a reasonable sleep if not brilliant, and the nausea was bearable. However at about 8 months the nausea got pretty bad to the point just thinking about the tablets in that weird off yellow colour ( not unlike this website background) made me feel really gagg!. I mentioned it to the rheumy and he recommended I try injecting. I got onto the injections about 2 months ago.The first shot hit me much the same as the first tabs did a year before but this has improved week on week. In general the shots brings less nausea, but its now totally impossible to sleep after the shot. Instead of the colour making me feel yuck, the smell of the Alcohol wipes is having the same effect now! I know its in my head but I cannot help it. I generally feel rubbish on the two days after it, I seem to feel sorer and its all a bit pants. As far as my PsA is concerned, as far as I can tell its had zero effect, I certainly haven’t felt any improvement with it. I know that the real proof is when you stop taking it, if the progression gets worse. It has however totally got rid of my previously very mild Psoriasis.My liver readings seem to be a bit up and down, so they have decided not to increase my dose of MTX as they dont think I will tolerate it. I have also been taking Leflunomide and Sulfasalazine alongside the MTX and neither have bothered me with side effects that I can tell, though they have not improved the PsA either. Its not a pleasant experience.
I have rheumatoid nodules on elbows and one under forearm.
Now I have a large 6″ nodule on my coccyx.
Looks likely cause is Methotrexate and sitting in my wheelchair all day.
Anyone else ?
Surgeon wants to cut out the big one but am at great risk infection. Also read the nodules come back after surgery if still on Methotrexate.
I had not heard that. RD causes nodules so I wonder how would they know whether it was from the medication or the disease.
I have been experiencing brain fog and my rheumy completely shut the thought down saying there can be headaches but this is not a side effect. was wondering how widespread there are others experiencing this and what are long term consequences as also short term when I have three young children and if I forget the immediate – like going to a room and forgetting what i went there for or leaving a grill on, it could be more serious.
Was on MTX for 6 yrs. Guess I was fortunate to not have a lot of SE, except the usual brain fog. Then one day on a refill the pharmacy gave me a pink MTX and did not inform me of any change. After my six pill dose the next morning I awoke with room spinning and the bed felt like I was on a roller coaster, so I squeezed my eyes shut and laid there until the felling went away. I checked, and the different pharmacies said it was MTX, just a different maker. I changed to another pharmacy, and told them I could only take the yellow pills. The injectable I tried a few years earlier did not work since a lot of the needles were not good, so went back to the pills. I tried Humaria, but seemed to have worse symptom’s and lung problems and worse joint pain. I quit the Humaria. Kept on the prednisone, and MTX. Moved back to our area and away from the doc who advised me to take the prednisone with a full glass of water each morning. Fortunately my pharmacist told me to never do this and was glad I hadn’t. I had many questions about that RA doc, and was glad we left the area. As I mentioned earlier the spine destruction sent me into a whirlwind of pain. Through this I found horrible side effects to many meds that others might not experience. I also tried 2 DMARDS at different times to get off the MTX, which I could not take, and no pain pills due to SE. As I slowly improved the MTX no longer seemed to work. I had one day of relief. My RA doc said it was okay to go ahead and not take the MTX, but to stay on my minimal dose of prednisone. My brain fog appears to have improved w/o the MTX. Sure, I still have days where my joints scream, but feel overall better. With my being on the Forteo to rebuild the back damage my RA doc hasn’t prescribed any biologic, but with my problems with meds I think I understand. Guess I just happen to be one of those people with weird side effects that throw doctors off guard. The one pain med that I could take-Propocet without dire consequences they took off the market, as with the Hismanal for allergies.
I was diagnosed in April of 2014. I just turned 22 in December. Been on methotrexate, sulfasalazine, hydroxiquine and folic acid as well as iron tablets bc I am anemic. My hair is falling out and it sucks balls. Lol
My Wife has RA and takes methothrexate weekly. My daughter wishes to get pregnant in the coming months. While the info here says that taking the drug while pregnant is dangerous, is it also dangerous for my wife and daughter to be near each other. Can my wife’s methotrexate use affect my daughters pregnancy while they are in close proximity etc?
Any thoughts would be helpful.
Bill
no I’ve never heard of that being an issue
I just joined this site, but all these posts are years old, so I don’t know precisely where I am supposed to post.
But I am having possible bad side effects with mex. Went to my heart dr. today & he thinks there is a good possibility that the extreme breathlessness after very little exertion could be from the mex. Also VERY, Very tired.
Does anyone else experience this breathlessness?
Lung x-ray negative. Heart seems fine, but having a echocardiogram soon to double check.
I cannot post anything . Help is needed.
Well now it seems to work. I saw my post. This is my story. I was diagnosed January 2015 with 2auto immune disease R A plus Sjogrens . I was put on the injection methotrexate 25 1ml per week . The first one was 0.6 the 2nd one 0.8 then every week 19 injections in all. I developed a bad taste in my mouth and also a vinegar body odor . This started in late September. My rookie thought it was caused by the meto.,so Dec. 3rd was my last one ..My family doctor with a blood test determined this was caused baca use I was positive for h-pylori. On December. 10 I started a new pill Arava 10 mg to start once a day This I took until December. 29 . I discontinued because of a severe rash back,chest ,arms legs very itchy . I saw 2doctors and they said drug related,. This rash lasted 13 days. Now I will start methotrexate on Jan. 28 but a lower dose 15 .
I was on Methotrexate for approx 1 1/2 months, taking it as a lead up to starting Remicade for crohn’s disease, and it was the only medication I was taking at that time (along with folic acid). I have been on many meds before but have never experienced anything like the psychological effects of methotrexate. I became very depressed, had dark thoughts, was anxious and almost suicidal (never experienced any of those before), the change in me was very evident, I had no choice but to stop taking it and will never take it again. I returned to my old self soon after stopping, tho when I think of its effects today I still get shivers.
Hello all! I was recently diagnosed with RA on December the 31st (great way to start off the new year huh?). I am looking for some answers from mtx users that have been on the drug awhile and some of the side effects i should expect. I have currently been on mtx for 6 weeks. I take six 2.5MG pills once per week normally on Friday night so that i can sleep off the extreme exhaustion i feel. I once took my dose early Saturday morning and by the end of the day i was exhausted and staring off into space (wont be making that mistake again). I also take one 1MG FA pill every day. For the first three weeks after i was diagnosed i was also taking 5mg prednisone pills. while on those pills i felt great and the swelling in my hands and feet went almost completely away. However, after stopping the pills my swelling and pain has gone back to before i was on medication.
so in recap:
1. What side effects can i expect from real users of mtx.
2. Are the injections better than the pills?
3. The mtx seems like it is doing nothing!?! (the prednisone was the main thing helping me)
4. Any encouragement/tips/personal wisdom that you could give me would all be gladly accepted!
Thanks,
-D