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Carol Eustice

Methotrexate: Incorrect Dosing Can Cause Serious Harm

By August 3, 2004

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Britain's National Patient Safety Agency (NPSA) has stated that oral methotrexate tablets are safe and effective if taken at the right frequency and the right dose. The drug is normally taken weekly, not daily. Confusion over the correct dosing schedule can cause serious harm. England is focused on making changes to eliminate human error in prescribing and by adding warnings and more information. Over a 10-year period in England, there were 25 deaths and 26 cases of serious harm linked to methotrexate.

Methotrexate belongs to the drug class known as DMARDs, or disease-modifying anti-rheumatic drugs. DMARDs slow the progression of rheumatoid arthritis and other rheumatic diseases, and help prevent joint damage. Methotrexate was developed as a leukemia drug in the 1940s. The drug was considered experimental in the 1970s. Methotrexate was approved by the U.S. Food and Drug Administration to treat rheumatoid arthritis in 1988.

Photo by Garrett Bautista (iStockphoto)

March 2, 2007 at 1:47 pm
(1) Cindy says:

My uncle in hosptial 2 months dieing most likely according to the MAYO CLINIC, as a side effect to Methotrexate!

September 18, 2008 at 9:57 pm
(2) Teresa says:

Oh my God, what is going on with your Uncle if you don’t mind me asking. I just started Methotrexate and need any info I can get. Thank you and may your Uncle have a God given recovery.

September 20, 2008 at 3:01 am
(3) Amie H says:

Methotrexate is an awesome drug, I’ve been taking it for my RA for about 17 years and I’ve never had one side effect or bad reaction. I have taken both oral and injectable methotrexate. It is a powerful drug, but if you just follow the instructions, you’ll be fine. Millions of people have used it safely.

January 9, 2009 at 8:43 am
(4) KIm says:

My mother has taken methotrexate for RA quite successfully for 15 years with only minimal side effects (canker sores in mouth, mainly). On 10/23/08 she went to the hospital after suffering a TIA. Six days later she was transferred to another hospital for PT to strengthen her limbs. In the transfer, the Dr. wrote her methotrexate order as a daily dosage rather than her normal (6) tablets weekly. He meant to write (1) 2.5 mg tablet daily and it came out 12.5 mg daily! The error was not caught for 11 days. She is currently fighting for her life in an LTAC with a vent and a trach. We had given the hospital a print-out of our mother’s meds and thought that was clear enough–now we know…question everything! It’s sad that we can’t trust our medical professionals. A patient almost has to have someone with them every minute in the hospital to ? every dose!

January 9, 2009 at 1:20 pm
(5) Carol says:

That is truly sad. I hope your mother can recover. There seems to be a lot of confusion over methotrexate dosing…as you said….even when spelled out on a medication list. The “once-weekly” schedule really stops nurses in their tracks because it is unusual. Your last sentence is so true….even though not always practical or convenient…you do need an advocate there for you when in the hospital. Thanks for sharing your story.

April 5, 2009 at 4:26 pm
(6) Jay Cravens says:

I have just started taking methotrexate once weekly, 6 – 2.5mg pills. This is my third week… hopefully i will have luck with it, as i am only 27 years old with moderate RA. So far so good, i haven’t seen any side effects of it. So sorry to hear about the misfortunes of it’s misusage :( condolences to all.

April 13, 2009 at 8:20 pm
(7) grace says:

I have been on methotrexate for 1 month and after 3 weeks I experienced extreme dizzy spells/vertigo…could not function for 3 days. Has anyone who reads this had this same reaction? If so, send me a response. Thanks,Grace

August 31, 2009 at 10:37 am
(8) Alet says:

I was on 13 tablets a week. Google methotrexate lung disease and see why I spent 101 days in ICU and but for the grace of God, almost died.

September 17, 2009 at 9:50 am
(9) virginia says:

I am on my third week dose yesterday. Was taking 6 2.5 tablets of methotrexate for fist two weeks, but have been told to take 4 now as i experienced nausea, diareea,also feeling giddy and half drunk, and neck and head pain.

September 24, 2009 at 6:42 pm
(10) Brittany says:

I’ve been taking methotrexate for 5 years now. I take 8 pills a week, and my doctor said I could divide them 4 one day, 4 the next, to ease side effects.

October 2, 2009 at 4:29 pm
(11) Diana says:

Hey people, I have a question. Can taking Methotrexate for over five years do alot of harm to you when you don’t even HAVE RA?

November 6, 2009 at 2:48 am
(12) Diane Schaefer says:

I have been on methotrextate for about a month. I have been experiencing some nasty side effects. I have had shaking, severe naseua, vomiting and dihareah. Not pretty and I take 60 units once a week and the next day the voniting and the rest of the fun begins. Is there any hope this will lessen?? My arthuritis is bad, but not sure the med is much better.

April 3, 2010 at 4:11 pm
(13) millie says:

I am currently taking care of a patient who had taken Methotrexate injectable and then switched to the oral form. She is fighting for her life as the medication has destroyed her stomach. She can not eat, she is on a liquid diet and can barely tolerate that. She also has a gastric tube and receives formula feedings. There are many times throughout the day that gastric acid leaks from the gastric stoma and has caused extreme skin damage. There are certainly many other problems that she has due to Methotrexate. I encourage anyone taking ANY medication to research the benefits vs the risks. Quality of life vs quantity of life…pain management vs adverse side effects. Not every patient will experience the same side effects. ALWAYS, talk to your doctor, more importantly, your pharmacists should be able to help you. You should do your own research so you will be able to make an informed and educated decision.

October 9, 2010 at 3:00 am
(14) smita says:

iam on methotrexate 15 on weekly basis,in 1 dose itself iam suffering fron stomach upsets, pain and bloating in upper abdomen,frequent motions, before and after meals, low grade fever, nausea, mouth sores,giddiness,chest pain, stiffness in the upper abdomen, pain in the jaw as i am suffering from lupus, RA n sjogren’s syndrome.

October 20, 2010 at 8:09 pm
(15) Jenny says:

Five years ago my mother was put on methotrexate 12.5mg weekly to PREVENT RA (she didn’t have the symptoms or markers for RA, but her mother had had RA). She developed anemia during the first year of treatment. About 2 1/2 years ago my mother’s anemia was so severe that she required iron infusions periodically. The hematologist suggested to my mother’s rheumatologist that the underlying cause might be the methotrexate. The rheumatologist said methotrexate wasn’t the problem, and he told my mother to remain on methotrexate so she wouldn’t develop crippling RA.

My mother’s RBC’s, WBC’s, and platelet count had been decreasing since late 2009. It wasn’t until July 2010, that my mother’s hematologist told her to stop the methotrexate ASAP. In August a bone marrow biopsy (bmb) was performed twice (not enough of a sample was taken the first time), and the diagnosis was acute myeloid leukemia (AML). Due to her age (81), the only treatment option proposed has been Vidaza. My mother has completed two cycles. Another bmb will most likely be completed in the next week or two. The oncologist said that methotrexate is the most likely cause of mother’s leukemia.

As Millie stated, I encourage anyone taking ANY medication to research the benefits vs the risks. This drug can have some very serious side-effects.

October 21, 2010 at 2:17 pm
(16) jean m says:

I have been on methotrexate for about 3 months and yes the nausia and dizzziness go, but when does the tired ness stop. get confused as to if the pain is side effect or my illness.

March 25, 2011 at 5:10 am
(17) Lynley says:

Having tried many different things fish oil evening primrose oil ( still use this but for day I take “methotrexate” this is meant help your liver ) etc as didn’t nasty stuff specially when had young children about! One is special needs but both were into everything!

I have been on methotrexate 20 mgs for about 16 / 18 years have been up 30 mgs in passed! On this dose my eye sight is worst also didn’t feel like eating Yes I do get nausea, mouth sores, hair loss,shortness of breath, cough etc but take it after food with large glass water! On higer doses I feel sicker and need pill to stop it! Also take folic acid once in middle week awaty day I take methotrexate. Have monthly blood tests rheumatologist started Plaquenil about 12 months ago. Is same family of drugs as methotrexate!

Plaquenil is prescribed as a disease-modifier, in other words, to decrease pain, decrease swelling, and prevent joint damage and disability. Either drug good side effects wise but feel if can’t move because pain and disability you do in end give in!

Have tried once or twice to go off it but walking and using hands became a problem pain everywhere to cut one story short! Have two knee replacements and hip replacement in last six years ( worsted they seen for someone my at time I told they me and they had said I was too young age I am nearly 53 years)
I have Arthritis – psoriatic,osteoarthritis, Psoriasis, strong family history Rheumatoid.

March 25, 2011 at 5:18 am
(18) Lynley says:

I have been on methotrexate 20 mgs for about 16 / 18 years have been up 30 mgs in passed! On this dose my eye sight is worst also didn’t feel like eating Yes I do get nausea, mouth sores, hair loss,shortness of breath, cough etc but take it after food with large glass water! On higer doses I feel sicker and need pill to stop it! Also take folic acid once in middle week awaty day I take methotrexate. Have monthly blood tests rheumatologist started Plaquenil about 12 months ago.

Plaquenil is meant to to decrease pain, decrease swelling, and prevent joint damage and disability. Either drug good side effects wise but feel if can’t move because pain and disability you do in end give in!

June 14, 2011 at 5:33 pm
(19) Sharon says:

started methotrexate 7 weeks ago.Took 4 once a week and was still in pain so theu upped it to 6 once a week.First day of 6 pills became sick with vomiting and weakness.Had to go to my regular DR.Took me off for a week and now experiencing light sensitivity,achy eyes and troubled vision.I am scheduled for a ct scan and will go from there.

July 7, 2011 at 4:00 pm
(20) Isobel says:

i have just started taking methotrexate, this is my 2nd week of taking four 2.5 tablets then next week i start taking six tablets for two weeks then go onto taking eight tablets every week thereafter. i was frightened to start taking these tablets after reading about the side affects, but, was told by the hospital that a lot of people take these without any side affects. Crikey since reading all of your comments i am terrified to carry on taking them, i am due back at the hospital next week for blood tests and i am gonna ask if i can go onto a different tablet. Hopefully they will give me a one because i do need to take something to help the pain in all of my joints and back and hip. Hope everything works out for you all and i,m pleased that i have had the chance to talk to you all. Take care all of you. xxxxxxxxx

November 21, 2011 at 3:52 pm
(21) Jaynie says:

I’ve just gone on methotrexate, in addition to the plaquenil I’ve been on for the past two years. So far, no side effects that I can tell. I’m hoping that this will slow down the progression of my RA, as I’ve already lost both knees and a shoulder from it. (I had one knee replaced at age 45, the other at 47, and the shoulder at 48.) I’m told this is WAY too young for TKR, but my knees were so bad there was nothing else to be done.

In addition to RA, I also have fibromyalgia, degenerative disc disease (spine), three fused intervertebral spaces, microcytic anemia, psoriasis, and severe asthma.

February 8, 2012 at 1:07 pm
(22) Anna says:

I started Methotrexate yesterday (15mg – 6 x 2.5mg tablets) and returned to work today! I felt spaced out, cold, tired, achey and fell asleep immediately on my return home from work at lunchtime. My knee has become inflamed and hot again and I feel a bit nauseous and very headachey. Due to take folic acid tonight after tea, but at moment can’t face eating anything! Kids getting their own tea. Smell of pancakes not a good move!!

March 21, 2012 at 1:59 am
(23) laura says:

1st time I took it = it worked great but got strep throat, stopped
2nd time= pneumonia, stopped
3rd time = strep again.
Docs didn’t feel it was related to methotrexate

3 years later, my RA was very painful. Tried methotrexate again. 6 pills 1x per week. Immediately picked up a couple of colds. At the 3rd week, got so sick I got to stay in the hospital for over a week,most in ICU. I’m young and otherwise healthy. Couldn’t breath. Couldn’t stop coughing. Had pneumonia and missed basically the last 6 weeks of my life. I’m allergic.

July 7, 2012 at 8:53 am
(24) Gary says:

I start 6×2.5mg tomorrow.. Do I spread them out during the day or all six at once?

July 27, 2012 at 3:12 pm
(25) Eric says:

I have been on these tablets now for six weeks for my skin problems. I would like to know is it natural to be so tired and lethargic 24hrs after taking meds.

January 4, 2013 at 5:29 pm
(26) Tim says:

My mother died from a relatively rare side effect of methotrexate. It is on her death certificate.This risk is thought to affect less than 5% of users.
The drug damaged the gas exchange membranes in her lungs causing scar tissue damage that grew steadly worse until she died after a month in ICU on a ventilator . They turned the ventilator off because the scar tissue in her lungs got so bad that even on 100 % oxygen she could not get enough oxygen into her blood to maintain life .

If you get shortness of breath on this drug go streight to your doctor as this was my mums symptoms . They thought at first she had pnumonia but antibiotics did nothing . scaring had already started and there was not pnumonia present. Please act fast if you get any breathing / lung problems after a few weeks on this drug . Go to your GP and tell them about this rare side effect .

January 20, 2013 at 4:22 pm
(27) Lin says:

I was diagnosed with RA about 12 years ago and have been on methotrexate for over 10 years now. I started having dizzy spells about 4 years ago. It got so bad I couldn’t leave my house because I never knew when a dizzy spell would hit me – no warning – and would last from seconds to hours. Noone associated it with the methotrexate until recently. If I go off the methotrexate, the dizziness seems to subside but the pain increases so much I go back on it. I recently started having shortness of breath but didn’t connect it to the methotrexate either. Will definetly ask my dr. about this. I don’t know what the answer is. Can’t live with the meds or the pain!!!

November 3, 2013 at 4:57 pm
(28) Rusty says:

After taking methotrexate for five years, I lost 20 pounds w/ out trying & had no energy. I went to my p.c.p. In tears thinking the worst. Blood work showed my kidneys were not functioning properly. My p.c.p. Sent me to a kidney specialist who in turn lowered my methotrexate dose from 8 pills a week to 4 pills a week . That seemed to do the trick, I stopped losing weight & got my energy back. After another two years , I lost another 40 pounds w / out trying , had bad canker soars in my mouth & esophagus. This time , blood work showed the methotrexate supressed my bone marrow. I ended up in the hospital requiring blood transfusions. I have stage 3 kidney damage , which no doubt is due to the methotrexate. I can never take methotrexate again. Unfortunate that patients are not fully informed of possible side effects. I consider myself lucky that more damage was not caused by the methotrexate.

January 14, 2014 at 5:48 pm
(29) cindy says:

my son is takeing this hes 31 just truned 31 this month he stays so sick all the time when he takes his dose once a week hes allways voiting for 3 days later and hes on folic acid all week long doesnt seem to help any hes had sores in his mouth and peed blood doc tells him this is all normal

March 1, 2014 at 6:06 pm
(30) june mayle says:

My friend of years, bled out following “sores in the mouth ” official diagnosis DIC, in her early thirties leaving small children. My neighbour, granted older has now been diagnosed with leukaemia, sure it is to do with the methatrexate.

Just don’t take it, it just isn’t worth the risk.

March 1, 2014 at 6:10 pm
(31) june mayle says:

Didn’t seem to work so here goes again.

I lost my friend, early thirties with RA, taking methatrexate. She had a virus and “cold sores”. Next thing we knew she deveolped DIC and bled out, dying and leaving young children.

Latest is close neighbour/friend, taking methatrexate for RA, now has developed leukaemia, ironically needs chemotherapy.

Just don’t take it, not worth the risk.

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