The Power of Chemo

Methotrexate is one of the most commonly used medications in the treatment of rheumatoid arthritis. It is a disease-modifying antirheumatic drug (DMARD), so in addition to helping with pain and swelling methotrexate is also supposed to slow the progression of RA over time. For most people, methotrexate is one of the first medications they try after being diagnosed with RA.

That was true for me. After my diagnosis and some anti-inflammatory medications to get my immediate pain and swelling under control, methotrexate was the first RA treatment I tried. Unfortunately, it was never enough to keep my RA symptoms under control by itself. But, with the addition of a biologic medication, the methotrexate helped me get my RA under control enough to graduate from law school.

However, because methotrexate can cause serious birth defects (and is even purposely prescribed to terminate ectopic pregnancies) I stopped taking it about six months before my husband and I got married. That was four years ago. And though my RA has definitely not been as well controlled without the methotrexate, my hiatus from this medication did allow us to bring two beautiful little boys into our family. But now, after almost three months of breastfeeding my second little boy, my RA has gotten so bad that I can barely hold my baby (let alone my 30lb two-year-old!) I knew it was time to wean and go back to properly treating my RA.

So I recently started back on the methotrexate. I know that this drug is not a quick fix, so I didn’t expect to see any extra relief from my RA symptoms for the first few months. But I have to admit that I also didn’t expect the intense nausea I’ve been experiencing over the past few days. I knew that methotrexate had the potential to cause nausea, but I didn’t think it would happen to me since I didn’t remember feeling very nauseous the last time I took this medication. But I guess that was four years – and two babies – ago! And my body is obviously very different now than it was then!

I already talked to my rheumatologist about the terrible nausea – he’s increasing my folic acid and decreasing my dose of methotrexate – so hopefully I won’t feel as bad when I take the methotrexate next week. But I still found myself at a party last weekend feeling unexpectedly queasy. When my friends asked me what was wrong, I told them that I was having bad side effects from a new medication. And, to help them understand why the medication was making me feel so nauseous, I told them that I was taking a chemo drug. And that is how I discovered another interesting “side effect” of methotrexate: the power of the word chemo.

Methotrexate was originally developed as a chemotherapy drug to treat various types of cancer, albeit at much higher doses. But even though I explained to my friends that I was taking a much lower dose than a cancer patient would take, an interesting thing happened when the word chemo was added to the conversation: it got more serious.

Although I’d like to think that I have been very open and honest with my friends about my RA and the challenges it brings to my life, I definitely noticed a change after telling them I was taking a chemo drug. Suddenly it felt like they were taking me more seriously. They were more attentive. They were more concerned. And it wasn’t just one person – after noticing this reaction with the first person I told, I used the word chemo with several more friends and the same thing happened every time. After hearing I had to take a chemo drug, my friends almost universally reacted as if my RA was much more serious.

I suppose my friends had this reaction because most people are familiar with cancer, how scary it is, and how terrible the drugs used to treat cancer make you feel. Almost everyone knows someone who has dealt with cancer – or has at least seen it in the movies. And I am certainly not trying to compete with cancer. As I said in a previous article, “At Least It’s Not Cancer”, cancer is scary. Cancer is serious. And I am very glad that I do not have cancer.

But I do think that it is unfortunate that RA and other autoimmune diseases are treated as so much less serious. Because, though the impact may be more invisible and (hopefully) less life threatening, RA certainly has a serious impact on my health and my life. So if I can use the word chemo to help my friends understand the seriousness of what I am going through then I guess I will. Because, though the doses may vary, I am actually taking a chemo drug to treat my RA.

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 (21)
  • Sabine
    4 years ago

    Pity about the differences in cost of injectable vs oral MTX.

    I have been told that oral intake of MTX is less reliable as availability can be restricted/interfered with by other events during metabolisation, e.g. in the intestine.

  • Christy
    4 years ago

    I definitely recommend taking methotexate with food. Eat a little and let it hit your stomach before swallowing those pills. I’ve also taken to spacing my 6 pills out over the course of a meal. I always felt worse taking them all at once. You could also try half at breakfast or lunch, half at dinner.

    I’ve also heard that the injectable is easier on your stomach but have been really hesitant to switching as it costs more (on my insurance anyway) and I’m already injecting Enbrel once a week.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Christy ~ Great advice, though weirdly for me the nausea hits the next day. And I didn’t think about the injectable kind potentially costing more! I’ll have to look into that if I consider making the switch!

  • Sabine
    4 years ago

    It’s strange, isn’t it, how the mention of chemo gets attention? I admit that I have used this at times, esp. with people who said behind my back that surely I am a hypocondriac or maybe a bit neurotic or whatever.

    I have been on MTX for a bit over 4 years. The nausea was gruesome at first, but with the step by step lowering of the dose and the whole business somewhat losing its drama, I can handle it now.
    I use a subcutaneous injection which is also available as a pen (as used in diabetes) and I am considering switching since the needles seem to cause bigger and darker and ugly bruising now.

    Three things did help with the nausea, all were suggested by my doctors, who warned me that it may not help all the time and everybody. So be warned also.

    1. Coffee. Drink a cup of coffee or espresso when the nausea hits you. Some chemical in the coffee apparently docks onto the same brain receptors that react to MTX with nausea. It helps me but only when the nausea hits me during the following day, not if it starts at night. Plus, if I drink coffee at night I can’t sleep.

    2. Inject after a good sized warm dinner. Not a huge one but not a snack either. The food processing somehow overrides the nausea stimulation in our brain – not entirely, but to an extent. I found this difficult at first but MTX nausea is a brain induced nausea and has nothing to do with what you eat.

    3. Inject after dinner just before bed time. This was the standard advice I got everywhere, assuming that you can sleep through the first heavy wave of nausea. I can do this now but it was hard going in the first couple of months.

    Other bits of advice I got but found not helpful – although I know it works for others – include pineapple juice (at least 1 litre/day) and plenty of water, up to 2-3 litres on the nausea day.

    I don’t have RA, the volcano I am sitting on is called Wegener’s granulomatosis. It’s equally nasty and unpredictable. But what the heck, let’s get on with life.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Sabine ~ Thanks for the great advice! The coffee one is something I’ve never head but for me the nausea definately hits the following day, so maybe I will give it a try! And pineapple juice sounds like another delicious option! Thanks!

  • Connie Rifenburg
    4 years ago

    MTX – my love and hate drug. MTX was the first drug tried along with steroids. It worked. No side effects, but soon I needed more, so we tried adding the regulars, we all know them. plaquenil, arava, sulfasalsadine, and then the biologics. Mine were Humira and Enbrel.

    As I developed allergies to all the “added” drugs, usually hives or side effects to my eyes (plaquenil), severe diaherria (arava), hives (sulfasalsadine), the MTX stopped working.(pill form)

    So I went on the injectable MTX. whala! it worked again. Stayed on that and steroids, but had to keep going up in steroids to keep the inflamation down.

    Since the injectable MTX was working, I don’t remember why, but my RA dr. decided to go back on the MTX pill form. About 3 days later, I was getting ready for work and my tongue felt funny..fuzzy sort of, and I had to make a conscious effort to swallow my saliva.

    I had never experienced anaphylaxis – your throat closing – from an allergy before..but I knew something was wrong. Stupidly, I tried to drive myself to a nearby ER. I barely made it – left the car running and couldn’t speak by the time I ran inside.

    Luckily, they knew what was happening, and took care of it, but I was never so scared in my life. Of course I didn’t know what had caused it. Not thinking the change from pill to injected and back might be the source.

    So, I had to go off all meds. Painful, horrible, for about 2 wks. Then we started adding one at a time. Steroids first. OK. Next pill form of MTX. BAM! This time I knew what was happening when my tongue began to “feel funny”.

    What I found interesting, and I’ve never been able to confirm what the ER doctor told me that day, was he told me that my RA dr. “should have known”, that this is a common side effect of going from injection to pill for MTX. Those were his exact words. “she should have known” it’s in all the literature.

    It was news to me, and obviously to my Dr. But it was a tough lesson to learn twice. I now carry two epi-pens at all times.

    Has anyone else been told that going from MTX injection to pill form will cause anaphylaxis? Maybe it’s not WILL, but CAN cause?

    Since all of the people here are MTX users, I’d sure like to hear if anyone else had that reaction. I am now on 750 ml Orencia, 5mg Prednisone, 75mg Lyrica (for Fibromyalgia), 40mg prozac, 80mg protonix (stomach), 100mg aldactone (BP), 5000mg Vit D3, 30mg oxycodone, .5mg Klonpin, 81mg baby aspirin (TIAs), pramipexole (for restless legs), Preservision vitamin for my eyes, Avastin injection into my eye(chemo) for Wet Macular Deg, and Brimonidine drops 2 day for Glaucoma – recently added Lasix and Potassiam along with Binosto for osteoperosis.(the last 3 aren’t working very well, so I think they will be a no-go soon).

    It is any wonder that this variety of meds don’t interact?! But what is the other choice? Vicki Heckroth, I can relate to your feelings as I had to go on disability at age 57 after fighting the diagnosis of RA for 7 yrs.

    The latest and greatest in my fight with RA started Oct 1, out of the clear blue, I began to lose weight. I am nearly 100 lbs overweight due to 15 yrs on steroids, but this is not the “good” kind of weight loss. My hair is falling out. I’m itching where there’s nothing to scratch, and my skin has become so dry that it’s cracking and my nails (toe and finger) are showing white stripes and ripples. I’ve lost 20 lbs since Oct 1. Luckily, I knew something was happening and so began to document in my journal. Saw the dr. today… and she is also concerned. I headed to the lab for blood tests. My feelings are: What next???

    Self diagnosis-thyroid. But we’ll just have to wait and see. Prayers from those that do so would be greatly appreciated.

    sincerely,
    Connie

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Connie ~ It sounds like you have really been through a lot, including some scary incidents! I’m so glad that you are ok! The scary reactions you have experienced are definately something you should talk over with your doctor, and if your doctor doesn’t give you a satisfactory answer it may be worth seeing another doctor for a second opinion. It can certainly be difficult when we are balancing multiple conditions and interacting medications, so if you are seeing multiple doctors it is also important to make sure that they talk to each other and work as a team. YOU are the biggest advocate for your own health so ask a lot of questions! And keep asking until you are comfortable with the answers! Hang in there!

  • Kathy P.
    4 years ago

    Wow, Vickie and Connie–that’s a lot of drugs! I don’t know of any drugs that really do more than just take the edge off the pain, and usually that’s because I’m too dopey to care and not something I can do all the time. I also have a fear of addiction because of my family history.

    Connie, I’ve had to discontinue Plaquenil, Arava, MTX and one other that I can’t remember because of allergic hives. Mine never progressed to the anaphalaxis stage, just lots of blisters, sloughing skin, hives in the eyes and swollen lips. I tend to have diarrhea on all of these drugs. I also keep an Epi-Pen and liquid Benadryl handy. I never start a new drug unless the roads are clear (30 miles of very snowy roads to the nearest town where I live), my G.P. doc is going to be in town and available, and I’m actually in town for several hours.

    It’s nice to know others’ experiences, so when we have a weird reaction, we don’t discount it and perhaps jeopardize ourselves.

  • Vicki Heckroth
    4 years ago

    I was diagnosed with RA and Fibromyalgia thirteen years ago right after the death of my son. Since that time I have also been diagnosed with spinal stenosis, degenerative disk disease and osteoporosis. I am 53 years old.

    I was on Humira and Methotexate until about 12 months ago. At which time the Methotrexate was beginning to give me flu like symptoms for a few days every week when I would take it. I tried the injectable version and it also made me sick. Now I am taking Arava instead. It does take a little longer to get into your system and work but the side effects are completely gone. So although Methotrexate can be a wonder drug for those of us with RA not all of us can tolerate it, and there are so many other options out there.

    I cannot believe how fast this disease can take over our lives. I had to have both knees replaced last August, am disabled at 53, there are just so many things I used to be able to do that I no longer can. Even holding my grand children is hard and painful. I am on so many meds that I often feel like a walking medicine cabinet. I am on Humira bi monthly and Arava, morphine,oxycodone, ambien, methylphinadate, predinose, Cymbalta, abilify, calcium and vitamin D daily. I hate this disease and what it has done to me, but I am learning to live with it. Does anyone else have to take meds like this and if not how do you control the pain??

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Vicki ~ I’m so glad to hear the Arava is working better for you. Isn’t it strange how all the medications work differently for each of us, even though technically we have the “same” disease? It can take a lot of time and patience to find a combination of medications that works – but when you do it can make a huge difference in your quality of life. So keep trying! And remember that we are here to support you!

  • Sandra Melton
    4 years ago

    Yes, I also feel like a medicine cabinet. I was diagnosed about four years ago and I can’t believe how much medication I take, plaquenil, MTX, prednisone, hydrocodone, gabapentin, Cymbalta, omeprazole, flexeril and several others for hypertension, elevated cholesterol, and so on.

    My family is not supportive and I hate my Rheumatologist. My symptoms aren’t controlled and I am currently in a flare but my doctor refuses to try any other medications for the RA stating that would be more harmful than helpful at this point. I am 46 and single so I feel pressured to continue working even though I don’t feel able to. I am not on disability but it is a question that is constantly looming over me, when will I have to give in. I am a nurse and find it more and more difficult to hang on to my job. I am constantly weak and tired. Any suggestions?

  • Kathy P.
    4 years ago

    While I was on oral MTX, I lost over 40 lbs., which was okay since I had gained 53 lbs. due to heavy steroids. But still I was tired of being sick all the time. I switched to the injectable MTX, and no more nausea ever.

    You can use such a tiny needle, you really can’t even feel it go in, so if you’re having problems with the oral, just go ahead and switch. I was on the maximum dose of MTX.

    As far as the Enbrel user: I’ve used both MTX and Enbrel, and the Enbrel is pretty painful for me, so the injectable MTX should be a walk in the park for you.

    For anyone having problems with the oral MTX, definitely try the injections. Even though it might seem scarier, it’s much better than dealing with the constant nausea and vomiting, which causes other problems from putting your body through that misery.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Kathy ~ That’s a great point about the size of the needle! Thanks!

  • Teresa
    4 years ago

    I have used methotrexate for RA for 15 years and I couldn’t take the pills because I am susceptible to stomach ulcers. So I have always been on self-administered weekly injections with folic acid and never have nausea. I’m on a biologic as well. Hopefully if you try that, it will help.

  • Mariah Z. Leach moderator author
    4 years ago

    Thanks for the suggestion, Teresa! Best of luck to you as well.

  • Debbie
    4 years ago

    I was diagnosed with Lupus almost a year ago after a major surgery. I have suffered with symptoms for many years but went undiagnosed. After being but on plaquenal and short term steroids I too began my journey on my “chemo” drug methotrexate. My inflammation and pain have yet to lessen so an increase of my dosage began two weeks ago. I also have experienced nausea the day after taking methotrexate. My rheumatologist recently suggested injections rather than an oral dose to lessen the stomach issues. I take my next dose tomorrow. Working 10 hour days it’s difficult to take my “chemo” drug during my work week since I never know what to expect. I would love some input on the injections verses the oral doses. My lupus hasn’t changed my outlook it has just changed my understanding of this disease and the people that suffer silently. I always push forward and focus on my future for the day my Lupus and RA is the furthest thing on my mind!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Debbie ~ Unfortunately it can take quite a while to determine whether or not methotrexate is going to be effective in treating your RA symptoms – that was the reason I never bothered to go back on it between my babies. And it can be frustrating to find a time to take it with the day after side effects. I hate to ruin my weekend but I usually end up taking it so the side effects happen over the weekend when I have my husband home to help. But you are right that all we can do is push forward! Hang in there and remember that we are here to support you!

  • Kimberly
    4 years ago

    Mariah,
    Have you talked with your doctor about injections versus pills? I’ve found since making the switch the “stomach” issues I had were much better. As much as it does suck to have to give yourself a shot…

    Best of luck,
    Kim

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Kim~ So far I’m doing better on the pills with a decreased dosage and increased folic acid, but I will certainly keep this suggestion in mind! I’m already stabbing myself once a week with the Enbrel so it really wouldn’t matter too much to add in another needle, would it? ~;o)

  • Ali
    4 years ago

    I love your post. I feel the same way as you in that people don’t understand the daily challenges of RA. I’m glad you filled in your friends and explained to them just how serious the medication you are taking is. Support is what gets me through all of this.

    When I was on methotrexate for over a year — stopped it last January… I was nauseous and never hungry. I had days when I would vomit for no reason. Even with the RX folic acid I felt this way. I also had bacteria overgrowth that I was treated for this summer and perhaps I had it for a long while and the combo made everything worse.

    When I do feel sick and need to get something down an apple, pear or walnuts usually helps. I hope you feel better soon and I hope you are able to be pain free and hold you boys.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Ali ~ Methotrexate is certainly a mixed bag, isn’t it? ~;o( Did you happen to try the injectable kind? Many people seem to think that it has fewer stomach issues and it is an option I will keep in mind if I continue to experience issues on the pills. And thanks for your kind words and support – I appreciate them! Hope you are doing well today!

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