Sick Days, No thanks!!

Vomiting is one of the many side effects of Methotrexate

Vomiting is one of the many side effects of Methotrexate

Being part of a support group, I check daily posts written by fellow RA sufferers. In a recent post called “MTX questions” a person asked what others do in regards to taking their MTX, (Methotrexate). Do they take it Friday and feel sick on Saturday or do they take it Sunday and feel horrible for Monday? This is a common question and it gets addressed often. For those of you that don’t know, Methotrexate is a chemotherapy drug, also known as a DMARD and it works by suppressing the immune system. For those of us with an autoimmune disease, the common thought is that an autoimmune disease means an overactive immune system. I have found information that states autoimmune diseases are simply the body confusing healthy tissue for non-healthy tissue, meaning it’s not a system that’s overactive as so much it is an immune system that isn’t working correctly. Suppressing the immune system does not make it work correctly. Instead, it keeps the body from destroying itself, kind of. Methotrexate may cause damage to the liver, intestines and sometimes the lungs, just to name a few. Although it doesn’t seem like methotrexate is a good option, doctors don’t present many other options when you get diagnosed with RA. And you can’t go on living with uncontrollable inflammation. Inflammation in itself, if left uncontrolled can cause cancer, intestinal damage, organ damage, other diseases and with RA will most likely cause joint erosion and deformation. So although taking a toxic drug like methotrexate seems out of the question, not taking it is just as scary.

It’s no wonder I kept searching for alternative options. I was tired of dreading my weekends. On Monday and Tuesday I still felt like I was a little bit “sick” from the methotrexate. If you haven’t taken this drug and it hits you hard like it did with me, this is what I experienced: The next morning after taking methotrexate I would feel more swollen, more painful and more stiff. My kidney area always felt like it had been kicked in the night and this would last until later in the evening. I would feel extremely fatigued and as if I had slept on rocks. Imagine you haven’t slept in 2 days. That’s how fatigued I felt. Or imagine what the flue feels like. That’s exactly how it was, resting both Saturday and Sunday so I could prepare for the following work week. Even running a low grade temperature wasn’t out of the question, of course this could have just been my RA at work. My hair would always fall out in mass amounts on Saturday and it would lessen as time went by. My eyes would be somewhat bloodshot and I would generally feel less hungry than normal for a few days. I wouldn’t exercise over the weekends. Instead, I would try and “recover” until the week started again and try to summon up energy to get myself to the gym after a few days of shaking off the methotrexate side effects. Heck, I was one of the lucky ones that didn’t throw up after taking methotrexate, a common side effect. As time went on having Rheumatoid Arthritis, I found myself becoming weaker and weaker. Workouts were less effective. My resistance level became less and less on the eliptical machine. I no longer did weights because the swelling of my wrists and fingers made it impossible. I continued to at least work hard at strengthening my knee joints. I figured that was the most important-being able to walk, so I made it my top priority.

When I finally freed myself of the methotrexate hangover, I felt like I was on the right path. And speaking of hangover, being on methotrexate meant you couldn’t drink a drop of alcohol because the drug itself does a # all on it’s own to your liver. Being off the drug meant I could drink again. Though I know alcohol is a poison, I tested my theory out on my own liver….just how bad can it be compared to methotexate? I was getting monthly blood tests because doctors have to keep track of how your liver is functioning and I would closely monitor my tests. At one point in time, just 10mg of methotrexate (a very small dose) elevated my liver enzymes. Yet when I went off this drug, one weekend I purged on alcohol. I came in for my test and didn’t tell them I was off of methotrexate. When the results came in, my liver was functioning better than it ever had while I was on methotrexate. Go figure!!

So truly, the reality is methotrexate is hard on your body. For those of you that take it, I feel for you. If your side effects are bad, giving up your weekends to a drug is a horrible thing to experience. I wish you all the best of luck in your journey with an autoimmune disease, or if you know someone who has an autoimmune disease please be compassionate as I’m sure they could use the support.

8 Responses

  1. I for the most part do ok. on Methotrexate. I take 6 pills ..I used to take them on Fridays at work and found that I could not get through the day easily so I started taking them on Monday nights…yes Tuesdays are a little rough but I eat a good breakfast ..drink my Spark ..and it passes. I take the Methotrexate for my psoriasis and yes it does help…but I am so tired of being tired the next day. :(
    I have MS and and psoriasis so I deal w/ a double dose of auto immune misery.

  2. I would also like to specify- I don’t hate reading the complaints about methotrexate- I hate that so many people have such a bad reaction to it, (and there’s no real alternative out there) when its literally my miracle drug.

  3. I hate reading all the negative ways mtx effects everyone so badly.. It is a very strong drug, and I myself have told the doc straight up ‘no its not necessary’ and low and behold, about 6 months later, I was so flared I needed cortizone in both wrists and elbows in order to function and take care of three kids under 5. I have tried all sorts of mds, salfasalizine, and another one that starts with a p… Not prednizone tho, and they had way worse side effects for me (brittle thin almost see thru skin). So I am back on methotrexate, 2 pills weekly, and take 2 plaquinil every night, and a 5mg folic acid the day before and the day after my mtx. I used to also take B12 shots to help with the nausea and they made me feel great!! I’ve been on mtx since I was about 6 and I’m 27 now and still get mild nasea the day after. But I will take a bit of yuck over complete immobility ANY DAY!! I wish everyone luck in finding a medication or dosage that works with minimal discomfort!! I know my levels are much less than others, but I’ve had a lot of recipe tinkering the last 21 years to find the right combo of meds for me.

  4. This is my15th week on it. I”m now up to 70mgs..I take 10 pills on Friday. I thought it was me. I am down for the count today..Saturday, and have been losing all of my weekends to this. I can’t stand it. I feel hungover every Saturday. It helps to know it’s not all in my head.

  5. I feel like my knees swell up more after taking metheltreaxate too, its so weird???

  6. I agree its an awful drug, I just started taking it a few months ago. I feel like it made me feel sort of down in the dumps. I have had RA for awhile but only recently after a hysterectomy did I try metheltrexate.
    I am eating on raw fruits and veggies and this had been the only ting that has worked well for me. I started with a few days of juicing fruits and veggies. I watched “Fat, Sick and Nearly Dead” The man has an AI disease too and gets better after just juicing for 60 days.
    Take care

  7. This is great info…Im goin thru this but my symptoms are lasting 5-6 days of feeling sick and week, feels unbearable, I am not the same bright bubbly person.

    How did you manage to come of this toxic drug ?? I would love to know…I refused to take this drug at first…I was on steriods, which my doctor refused to allow me to take after 6 months.

    Look forward to your response.

    Best wishes from someone who has hope !

  8. I’m sorry you had this reaction to methotrexate. I have been on 20mg once weekly for three years and it has never made me sick or made my hair fall out. My liver enzymes are normal. It really changed my life in an amazing way. I thought I was never going to get better, but I did! It was because of the methotrexate.
    It’s not for everyone. People react to it in different ways. It made my good friend’s hair fall out. Obviously, it makes other people very sick. But people, don’t be afraid to try it. Keep trying different medications and don’t give up. It took 8 years to find a medication that worked for me. This was the one. For you, it may be something else. I hope you find something!

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