Hello. I am assuming the reasons you clicked on this article are because 1) you have lupus and 2) it is affecting your joints. It is reasonable to also assume that your doctor has suggested you try some strange new medication called methotrexate, but you are skeptical and scared. Most likely you have already Googled the drug, and come across the word no one wants to see associated with a new medication… “chemotherapy.”
Before you toss your doctor's prescription into the trash (are there any doctors who are not paperless these days?) please take a moment to read this blog. I hope that it might change your perspective on this widely used, affordable, and effective medication. A drug that I (Kelli) have personally used over my many years of living with lupus and RA and in my opinion, have found very helpful.
“I feel 75% better on it. It definitely helped my vasculitis, psoriasis, and other skin rashes - joint pain is mostly better.” - Laura, Patient
What is methotrexate?
Methotrexate (Rheumatrex, Trexall) is today’s go to treatment for inflammatory arthritis, which is associated with lupus and RA. It is generally considered the “gold standard” treatment for RA by most rheumatologists; in fact, about 90% of RA patients will be on methotrexate at some duration in their illness. Contrary to some patients' beliefs, methotrexate is not a new therapy. It has been used to treat inflammatory arthritis for more
than three decades. However, it’s been around much longer than that. It was first developed to treat cancer (primarily childhood leukemia) in the 1940’s. It is still used to treat various forms of cancer, but in much higher doses and usually in conjunction with other chemotherapy medications. When it was discovered that it relieved the pain, swelling, and other symptoms of arthritis, it was fast-tracked to be FDA approved for the treatment of inflammatory arthritis in the mid-eighties and soon became the treatment of choice for people who had tried and failed other arthritis medications.
“I’ve been too afraid to take it because of the side effects. I would love to hear more about the process of getting started on methotrexate.” - Angie, Patient
Because it was originally designed as a cancer fighting agent, (due to the way it suppresses the immune system and stops certain cells from replicating), people often become fearful of taking it. Patients are scared because the word “chemotherapy” is associated with methotrexate. It is very important to have a dialogue with your doctor, so that she or he can clarify how this medication is prescribed differently for inflammatory arthritis, and works differently within the body than it does for cancer.
How does it work?
Methotrexate is classified as a disease-modifying antirheumatic drug (DMARD). It works by not only reducing pain and swelling, but actually slowing joint damage and disease progression over time. It does this by altering the immune system. But, once again, it works differently when given in high doses for certain types of cancer than it does given in lower doses for rheumatoid arthritis (RA), psoriatic arthritis (PsA), juvenile idiopathic arthritis (JIA), or lupus arthritis (rhupus).
This is where it gets fascinating...well for me, but I am kind of a medical nerd. Methotrexate was discovered to inhibit folate pathways (folate is a form of vitamin B that is necessary for cell survival) by inhibiting enzymes that play a role in the DNA processes within cancerous cells. What researchers discovered was, this “antagonistic effect” that methotrexate has on folate can lower inflammation. Recently, methotrexate has been identified as a JAK/STAT inhibitor, which if I could put into normal people talk, means it gets in the way of overactive immune and inflammatory signals. All of this crazy complicated signaling helps lower inflammation, joint pain, and (hopefully) prevents joint damage.
How it is taken?
If your doctor wants you to take this medication, it is typically given as a once a week dose of 7.5 to 10 mg taken by mouth. If that doesn’t help with symptoms, your doctor may raise your dosage to help, but it is all based on how you tolerate it.
If the pills won’t calm your symptoms, or you are experiencing a lot of side effects, your doctor might give you subcutaneous methotrexate – which is a shot given under the skin, in the stomach or thigh, at home. Many patients favor injections because it puts more of it into your system without increasing side effects. Switching to methotrexate injections may seem scary, but the needles are very small and not painful...I speak from personal experience here.
You will notice that when you start methotrexate, you will also be told to start folic acid. This goes back to the whole “folate inhibitor” thing. Most patients are started on 1mg daily, but are often increased to 2-3mg depending on side effects. Personal note: I started on 1mg and was increased to 2mg and it made a BIG difference. There is somewhat of a debate if you should or should not take your folic acid on your methotrexate dosing day, but my doctor is PRO taking it EVERY DAY. But, talk to your personal doctor on that one.
Methotrexate can stay in your system for several weeks and does not need to be tapered off like corticosteroids. However, if you miss your dosing day, take it as soon as you remember, then re-adjust your weekly schedule. Tip: the more regular you are to your methotrexate schedule, the quicker you will see and feel the results of it working.
What are the benefits?
Methotrexate can be given to people with various types of arthritis and related conditions, including:
rheumatoid arthritis
psoriatic arthritis
reactive arthritis
vasculitis
enteropathic arthritis
myositis
systemic sclerosis
lupus.
It can also be given to children who have:
juvenile idiopathic arthritis
lupus (SLE)
juvenile dermatomyositis
vasculitis
uveitis
localised scleroderma.
It is widely used, affordable, effective, and (when taken properly) safe. It can be used in conjunction with other therapies, and can start working in a few weeks after starting it, but can take up to three months for the full effects. Though it is considered an “immunosuppressant” it is actually a weak one compared to other therapies used to treat SLE and even RA.
What are the side effects?
Every person responds differently to medications. In general, some of the more common side effects of this medication are:
Stomach upset
Diarrhea
Increased infections
Lower white counts
Elevated liver enzymes
Mouth sores (rare)
Hair loss or thinning (less than 10%)
"My Rheumatologist wants to start me on it. I just don't know ... doesn't it make a person more immune suppressed?" - Susan, Patient
Things to be aware of:
There are some important things to know when taking methotrexate.
It is generally suggested to not drink alcohol while taking methotrexate. Some studies have suggested small amounts might be okay, but this is really a case by case basis.
Avoid Echinacea, which can interfere with its efficacy.
Make sure you follow up with your doctor's lab orders. It is important to have your complete blood counts and liver function tests checked while taking this medication.
Methotrexate has a high chance of causing birth defects and miscarriages in unborn babies. If you are a female taking this medication, it is important to be on a strict birth control regime to prevent pregnancy.
If you are wanting to conceive, it is suggested you stop taking methotrexate and wait three months before stopping your birth control.
This medication is also secreted in breast milk, so breastfeeding is not recommended.
Methotrexate may interfere with the efficacy of certain vaccines. It has been suggested to temporarily pause dosing if you are receiving the COVID-19 vaccine. Most doctors suggest patients who are stable to pause for two weeks. If you are in a flare, or have severe inflammatory arthritis, talk to your doctor about what protocol will work best for you.
Be honest with your doctor about your lifestyle, what supplement's you take, and all medications you are currently on.
Closing:
I didn’t want to end this blog without sharing my personal experience of taking methotrexate. Having lived with JRA, SLE, and inflammatory arthritis for 30 years, and having tried so many different joint medications, I can say that methotrexate has worked far better for me than any other drug. I first started with pills, taking 7.5mg (once a week) and 1mg folic acid (daily). I noticed some hair thinning, but primarily experienced stomach symptoms and what we call “meth fog” the night after treatment. My dose was eventually increased along with my folic acid. My hair started to thin a little more, so my doctor suggested that I switch to injections. The switch to injections was a game changer. My hair has grown back, I don’t have any stomach issues, and only experience a little of the “meth fog.”
For so many years, I had endured steroid shots in my wrists, knees, and fingers every 8 weeks due to painful joint issues. Not to mention the 4 knee surgeries and two rounds of Synvisc procedures. I also endured taking high dose steroids, NSAIDS that wrecked my stomach, and bleeding issues. I am happy to report, due to taking methotrexate, I don’t have to do those painful shots anymore. I can see a measurable difference in my joints. I can feel a measurable decrease in my pain level. I am able to do more because of methotrexate.
And I will take it gladly...meth fog and all.
Written by,
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.
Sources:
October 2021