“Methotrexate” or “Chemo?”

Last night was “Chemo Night.” Or, It’s almost time for my chemo. Or maybe, Chemo really kicked my butt today! These aren’t direct quotes of anybody in particular, but I’m paraphrasing some of the things I sometimes see online from other RA patients. But wait a minute, why are RA patients talking about chemotherapy? They have RA, not cancer.

The “chemo” RA patients are referring to is the drug Methotrexate, which is a disease-modifying anti-rheumatic drug, or DMARD. It’s used to treat RA, other inflammatory diseases (psoriasis, Crohn’s, lupus), and several types of cancer–such as breast, head and neck, lung, blood, bone, lymph node, and uterus cancers. However the dosing and drug mechanisms of Methotrexate are different for RA compared to cancer treatments. Methotrexate also belongs to a class of drugs known as antimetabolites. It works by slowing or stopping the growth of cancer cells and suppressing the immune system.

So yes, Methotrexate is technically a chemotherapy drug. I find it interesting to observe some RA patients using the word “chemo” either in place of “Methotrexate” or mentioned along with it when talking about their medications and disease. On the other hand, there are some people with RA who don’t use the word “chemo” at all. Why is this? Does it matter?

In a related article, The Power of Chemo, author Mariah notices the unexpected influence and power the word “chemo” has when she uses it to try to help someone understand her RA. She argues that referring to Methotrexate as “chemo” helps people realize just how serious of a disease RA is–as well as other autoimmune diseases. Better understanding of RA in society as well as correcting misconceptions about the disease is gravely needed. There are still way too many people out there who think that arthritis, in all its forms, is “no big deal.” Perhaps pointing out how serious and strong one’s medications are is one way to do this?

Not everyone, however, agrees with throwing around the word “chemo” so freely–especially by people who don’t have cancer. I’ve had conversations with RA friends and some of them find the use of the word “chemo” in this situation incredibly annoying and sometimes even offensive. Why? They don’t think it’s necessary, or they think using the word sometimes sounds a bit braggy or attention-seeking, like “Look at how bad I have it!” Making comparisons between RA and cancer, even if unintentionally, can be dangerous and trigger strong emotions.

Personally, I’m on the fence about this. I can see both sides of the argument and maybe there’s even another side we’re forgetting. Is the Methotrexate vs. chemo debate no big deal? Is using the word “chemo” an effective and positive way to help others without RA understand the disease? Should RA patients use the word “chemo” with other RA friends? Or, is using the word “chemo” an insensitive and potentially offensive behavior? I’m interested to hear your thoughts and experiences!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (30)
  • tammielyn
    3 weeks ago

    My humble opinion is why is it wrong to tell your truth? Why does telling your truth and your journey dealing with a decades long debilitating, extremely life altering, with no cure disease who for many can come along with other illnesses as well insensitive? Can’t it be said that if others want you to downplay your truth and suffering that is a little insensitive? We need to try to stop judging each other, or attempt to control how we chose to discuss our journey I have so much empathy for anyone with any serious disease that is life altering and severly impacts the quality of your life and those of your family. And my hope is that everyone would care enough for each other to hear their story including the medication they are on without stifling them in any way. Love isn’t judgment it’s compassion. I do chose to use this term and since I have, I find my loved ones are taking my chronic illness more seriously and I’m getting a little more help that I desperately needed. Much love to all of my spoonies.

  • catsady
    2 years ago

    I very rarely mention chemo, but when I do it’s usually because people are pressuring me to drink alcohol. I work in theatre and music in Australia, and this happens pretty much at least once a week. When I say I’m on medication that restricts drinking, people think I mean I’m taking antibiotics for a cold and they go, “so what?” So sometimes I do mention low dose chemo drug at this point, because at least it sounds serious and uncommon enough that nobody will buy me a drink and then be offended if I don’t drink it.

  • noniebevan
    2 years ago

    I was diagnosed at 41 with RA last April…… People seriously do not understand how painful and challenging it is for people with RA every day and night being in constant pain.

    The only way people have understood how serious this disease is, is by making them aware that the drug I take although at a lower dosage is the same drug used to treat cancer…..

    I don’t have an issue using the word chemo if it helps someone understand better what I am going through.

    The other big thing I get all the time is I’m too young to get it and it’s arthritis, they don’t seem to get the difference between Rheumatoid and osteo

  • barbie924
    3 years ago

    As a stage 3 Lymphoma survivor and a newly diagnosed RA patient I believe people have the right to call their meds what they choose. I have been through months of chemotherapy treatments for cancer and achieved remission. I have been on methodextrate and couldn’t tolerate the side effects. I am now on Arava with many side effects, including hair loss..There will be no remission for this unpredictable chronic disease. It is a matter of finding the right combination of medicines to prevent the progression and control the pain. I think if there were more awareness people would know the severity of RA and not question or judge.. Everyday is a challenge and I will continue to say I am on a cancer drug.

  • noniebevan
    2 years ago

    I agree with you and am sending you lots of hugs. It’s a horrible disease and I am also struggling with the side effects of methotrexate.

    It’s a very horrible and powerful drug that completely takes a whole day out of my week due to the dizziness and sickness feeling that comes with it

    take care
    x

  • nothintadu815@yahoo.com
    3 years ago

    The reason I use the term Chemo is because that’s what my Doc called it. I didn’t know the pharmaceutical name until I began reading this Blog!!! I will tell you, however, that I was diagnosed several years ago, being treated with NSAIDS. It was not until I developed a stomach ulcer and could no longer take them that my Doc recommended I start the Chemo… When I began to tell family members and friends etc.. I began to get completely different reactions! Until this time, none of them took my pain or experiences with Ra seriously. When I told them about taking Chemo they all became so attentive and supportive!! I can’t imagine that folks would have that kind of reaction. I think that until then, they must have thought I was malingering and therefore minimized everything I said!! I must admit that it feels so much better to be validated for what I was going through!

  • noniebevan
    2 years ago

    I completely agree…..people seemed to think I was exaggerating and being a drama queen until I told them all the drugs I have to take and what they are….

    it’s important that people know how much pain and challenging every day is for everyone suffering with RA is

  • Loey
    3 years ago

    I won’t judge others’ choice, but I fall on the side of not referring to MTX as chemo When it’s used for RA. The reason is that when people are on chemo for cancer, there are “rounds” of chemo with time periods in between, and at some point it is over. When used for RA, it is life long. People are annoying enough when they continually say things like “hope you get better soon.” but if I were to use the word Chemo, the general uninformed idiot, er, person would then expect it to cure you and you’d get over it. I fully understand the desire to communicate the seriousness of the disease to the thoughtless and clueless who insist they know all about arthritis. but i don’t think “chemo” is a good way to do it. And no, i don’t know of a better one either just don’t want to introduce another misconception to the already confused.

  • chobo15
    3 years ago

    I refer to methotrexate as chemo. If I explain to some one in detail I will say it is low dose chemo. I had very severe side effects from methotrexate. I almost had to drop out of high school (I began methotrexate treatment part way through my senior year)because I was so sick but luckily was able to graduate. I took it Friday and was sick until Wednesday. The rest of yhe week i was very tired and felt mentally foggy. The benifits to my RA were not worth the suffering and to this day I refuse to take it. I would only take it if it was for a limited time and to save my life. Living in horrible pain is better than living in a constantly weak, dizzy and violently ill zombie like state. I couldn’t even focus to read or watch tv. Yes it is low grade chemo but RA patients are forced to take it indefinitely for the rest of their lives. I think it is important people understand just how sick this medication can make you. It takes 3 years to completely leave your body and should not be taken lightly. I have never been so sick in my life as I was on methotrexate.

  • kgirl64
    3 years ago

    I think telling people its a low dose chemo drug for RA does make them understand that RA is much worse than the osteoarthritis most people have.I get sick of people telling me “oh I have arthritis too, your just weak because you can’t take the pain that all of us deal with when we have arthritis” People do not understand how painful and life changing RA is for most people.

  • fairyboots
    3 years ago

    Methotrexate is indeed a chemo drug. However it isn’t the only chemo drug. There are many, many more chemo drugs. Many that are much, much stronger. It is only used for certain cancers it’s not used for every cancer. Sometimes, just like with RA, it is used in combination with other drugs. I worked as a medical assistant in an oncology hospital for nearly 5 years. I know the suffering that cancer patients go through. I’ve also had in the last few years my grandmother, 4 aunt’s, and uncle and my father-in-law battle cancer. I know the suffering that cancer patients go through from the treatments and the disease. That being said, we are comparing apples to oranges. The disease is not the same, but sometimes the treatment is the same. Just because the dosage of the medication is lower doesn’t mean it’s not the same medication. Would you say it’s not penicillin just because it’s a low dose of penicillin? No, it’s still penicillin. I tell people ,when asked ,that I’m being treated with ” methotrexate, which is a low-dose chemo drug”. I don’t stress Or make a big production like I’m “on chemo”.
    What I suffer doesn’t ” take away” from what anyone else suffers. However I’ve heard many times from others that have had cancer and are now in remission or who currently have MS, or psoriasis at least it’s not … Whatever illness they have. All those things are terrible and unfortunate conditions. I would never presume to tell a cancer patient or an MS patient that at least it’s not RA!

  • i551ue
    3 years ago

    I can’t tolerate metho, so I take Arava…same thing, a chemo pill! Chemo Meds are chemo Meds…we still have the same side effects and worries as anyone else….when people ask why I cut my long hair super short or they notice my bald spots ( from the Meds)..I tell them why! Just because I have 2 RA’s doesn’t mean my disease is any less than any other chronic disease. I don’t wish this horrible disease on anyone…Chemo pills , along with my other serious Meds, control my pain and make my life tolerable . I tried a lower dose when I lost my almost all of my hair…my body couldn’t tolerate the severe pain & my markers went up! So YES, I take CHEMO pills for a very good reason! Chemo pills are used for several illnesses, not just cancer, not just RA. Do I want to take chemo pills? NO….Do I have to take chemo pills…YES! The word chemo means it’s origins are “chemical ” as in chemical treatment….Chemo therapy is used for many diseases.

  • AnnieD
    3 years ago

    I often find that some people with cancer have treatment, then they are almost completely better. While I struggle daily with pain, chronic lethargy, and getting sick easily. Sometimes I get upset that they are given so much support, and yet, people brush aside RA. I’ve had people say, “yeah, my joints hurt sometimes too, but I deal with it.” It’s not the same. I wish they would know what my pain/frustration is like. I wish we had the same support that people with cancer could have. I know cancer is life threatening… but, some people with cancer are in MUCH better condition than I am, yet… they still have more support.

  • JJ
    3 years ago

    The truth is Methotrexate is indeed a chemotherapy no matter what we choose to call it.

  • Jillian S moderator
    3 years ago

    JJ,
    Thanks for sharing your comment and for being a part of our community.
    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Deen
    3 years ago

    I have heard that dreadful phrase “at least it is not cancer” more times than I would like. When I first mentioned the word “chemo” and saw the visceral response when I said it was used for RD, I was devastated. Told by friends that to imply that RD is as serious as cancer was insensitive. After all it is just “arthritis.” This response made me shy away from using the word and downplayed the impact this disease has on one’s life. However, after several lengthy conversations and educating all on what RD really is, I started to see change and acceptance for the use of this term “chemo.” For a long time I was on the fence seeing both sides of the argument. Now, after having my hip replaced at 48 and almost losing my vision to optic neuritis at 50, I with confidence use the term chemo to describe MTX. It has slowed (along with remicade) the progression of RD and given me back a quality of life I have not had in a long time.
    Hopefully we as a community can continue to educate so we no longer have to have this difficult discussion on should we say methotrexate or chemo.

  • Carla Kienast
    3 years ago

    Angela: You’ve written a very thought-provoking article on what is (obviously) a highly charged topic. I personally have avoided the term “chemo” or “chemotherapy” until recently because of its close association with cancer treatment and I was concerned I might cause more confusion than I solved. While I take MTX, I also take a biologic monthly via infusion. When this comes up in conversation, many people don’t immediately get the word “infusion”, so I tell them, “Think chemotherapy” to help give them a visual image of the treatment. I don’t say what I’m doing is chemotherapy, but I try to help them understand that the treatment process is the same/similar. Like you, I understand both sides of the discussion, but from a personal standpoint, I don’t want rumors/misinformation that I have cancer. People don’t always listen and even when they do, they don’t always understand. Telling people that I have chemotherapy can be broadly misinterpreted. Thanks for opening up this important topic.

  • Angela Lundberg author
    3 years ago

    Thanks Carla for your comment and insight! Hearing your personal side of the “story,” as an RA patient yourself who also takes MTX, I think it’s really interesting and valuable for others to hear. Thank you!

    Angela
    xx

  • rtjuliemo
    3 years ago

    I guess I am wondering where the problem is. When I took MTX, people asked what it was. So for a layman explanation I simply said, “It’s a low does Chemotherapy drug.” Both RA and Cancer are life threatening, both come in many different forms, both requires many different treatments or combination of treatments. It is a chemo drug. I don’t say that to down play anyone else’s disease process. It is quite simply a fact.

  • Eilis Smith
    3 years ago

    I don’t think that that the very low dosage of Methotrexate used in RA equates to even a low dose for the treatment of cancer. Personally I would never tell someone I was on chemo. Sadly I know only too well the sometimes devistating side effects of chemotherapy for cancer. My hubby is terminally ill and is on his second type of chemotherapy used to slow the growth and spread of stomach cancer with liver and oesophageal secondaries, the hell he endures post treatment makes my methotrexate side effects look laughable.

  • Eilis Smith
    3 years ago

    Thank you this means a lot.

  • Jillian S moderator
    3 years ago

    Eilis,
    Thank you so much for letting us glimpse into your life with RA. I am so sorry to hear about your husband’s cancer and we will keep him in our thoughts and prayers. Please know that we are here for both you and him if you are in need of any support.
    We really appreciate your feedback on this topic especially given your unique circumstance.
    Hoping to hear from you soon.
    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • 27nw8d
    3 years ago

    Considering that most of us, if not all of us, with RA have faced being told “I have that in my left knee” or “Can’t you just take some Tylenol?” I have no problem telling other that I take low dose chemo for my RA. I feel that it emphasizes the fact that this is not the same thing as your granny’s sore knee. It is not attention-seeking or trying to one-up anyone, it is an attempt to educate others as to the true nature of this disease. Few people know what Methotrexate is, but most have some understanding of what chemo is.

  • Angela Lundberg author
    3 years ago

    Hello,
    Thank you for your comment. I agree, I have also experienced people saying those kinds of comments about RA, and it’s irritating and frustrating. Like I said in my article, I think there’s a great need for a better understanding of RA in the general public, and to correct misconceptions. I also agree with you that most people don’t know what methotrexate is but chemo is usually instantly recognized and has meaning attached to it.

    Thank you again for commenting. I hope your RA is ok and stable!

    Take care,
    Angela

  • suzi2007
    3 years ago

    Chemotherapy is the use of medication (chemicals) to treat disease. More specifically, chemotherapy typically refers to the destruction of cancer cells. However, chemotherapy may also include the use of antibiotics or other medications to treat any illness or infection.

  • Eilis Smith
    3 years ago

    Yes absolutely, steroids and antibiotics are frequently part of the chemo regime. Good point.

  • kingjer
    3 years ago

    I am trying to remain calm as I write this. Your statement, “Or is using the word “chemo” an insensitive and potentially offensive behavior?” makes me so angry my head is reeling. Rheumatoid Arthritis is an incurable disease that leaves us broken, fatigued, deformed, and in constant pain. To imply that we might offend cancer patients by use of the word Methotrexate as “chemo” implies that their diagnosis is more severe than ours. So, having a “potentially” deadly disease is more serious than having a diagnosis of a lifetime (which will be shortened by our disease) disease process which is no less debilitating than a cancer diagnosis. I do not, by any stretch of the imagination, mean to make light of a cancer diagnosis. I have lived through the process with my father-in-law and I am intimately aware of what chemotherapy does to a human. I was able to help him with some of his symptoms and be aware when he was in crisis. That being said, please know that a real understanding of the severity of RD (I was diagnosed 34 years ago) is what I desire and if using the word “chemo” to describe one aspect of my treatment can impress upon someone the severity of my process, then neither you nor anyone else has a right to imply I am being “braggy” or “attention-seeking.” It is a drug used in chemotherapy and has just as many adverse effects on me as it did on my father-in-law. People are too easily offended today – find a real reason to be offended.

  • Eilis Smith
    3 years ago

    While I fully understand your arguments and sympathise with your illness. I too have RA, but my poor hubby was diagnosed last June with terminal cancer, with a life expectancy of 11 months without chemo, and a maximum of 2 years with chemo. I have watched what he has endured with chemo and personally would refuse treatment if it were me. I don’t think we can compare like for like between a long term all be it totally life changing illness such as RA to terminal cancer. The levels of side effects in the treatment of life limiting cancer cannot remotely be compared to the methotrexate used in RA. But I know what you mean and do not mean any disrespect to you or your point of view.

  • f5wpkp
    3 years ago

    Sorry I hit reply by accident

    What I was saying in the last piece was that I was speaking to an extended family member that her battle with breast cancer. Thankfully she was winning and was pretty much in remissive stayed at that point. But she had apologize to me because she felt bad that in her words ” yes her disease is horrible and scary but she’s able to beat it and MoveOn and obviously be cautious for the future, but I would have to battle my diseases for the rest of my life, and the types of drugs that I am on, will inadvertently and most likely take years off the end of my life. So it’s a double edge sword. I either take the drugs now to slow the progression of my diseases as much as possible or let my immune system destroy my body.” I will say I was floored and someone embarrassed because to me the risk of cancer taking her life is much scarier than me being on low doses of chemo for the rest of my life. Inevitably I think you’re going to find people on both sides that feel hurt no matter what you say or how you classify methotrexate. Anyone who’s taking any form of chemotherapy is obviously going through one of the hardest times in their life. So the emotion that’s connected to that word is extremely powerful.

  • f5wpkp
    3 years ago

    I have to COMPLETELY agree with kinger. I do have multiple overlapping on any diseases so not only return through this but Lupus with raynauds and also a Fibromyalgia Dx. And I’m only 33 with the three and a five-year-old . My doctor was actually the first one who referred methotrexate to me as chemotherapy. The only distinction she used was that it’s a lower dose versus someone who has cancer. But it’s still category X and an extremely toxic and potent drug. a drug I will be on indefinitely to help manage my autoimmune diseases. I have a huge pet peeve with people who feel the deed to make everything a competition. I’m not sure who wants to play who is sicker or who has the worst disease, because no one wins in either scenario. I’m extremely sensitive to those who have and are battling cancer Because so many people in my family has gone through various forms and it’s just the ugly and awful disease. So I my mind Busing the phrase chemotherapy doesn’t diminish what cancer patients are going through. I will agree with the statement of the article that for the general public use of the word chemo or chemotherapy, does give a better understanding or grasp on how severely RA and other autoimmune diseases impact our lives. Everyone has their battles of their journeys, and I don’t see how calling methotrexate what it is is hurtful to cancer patients. I’ve had too many family and friends battle various forms of cancer and consider myself highly sensitive to their feelings. In talking to him extended relatives with breast cancer

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