There are heaps of scary stories about methotrexate out there - massive nausea problems, hair falling out, bad ulcers, pneumonia and bronchitis, and big liver problems (especially if you drink).
It’s nerve wracking to someone just starting on it, especially after an allergic reaction to sulfasalazine.
I’ve just taken my second tablet - methotrexate tablets are usually taken once a week.
I’ve been very cautious.
Better to start when inflammation is controlled
Ideally, I would have been on a controlling dose of prednisolone when starting MTX. But, with the few ‘wasted’ weeks of sulfasalazine, the prednisolone has been tapered to a level where my pain is back, and there’s loads of inflammation visible in my blood tests.
Be 'healthy' when you start methotrexate
First, I got over the flu I picked up in the hospital, quarantining myself doing anything in public that wasn’t absolutely necessary - no gym, no water aerobics, no shopping, no social outings, no visitors.
This was to clearly recognise any flu- or pneumonia-like symptoms, as this could mean you can’t tolerate MTX.
For a week after taking the first tablet, I stayed in my self-imposed quarantine.
Support the liver and kidneys
No alcohol - The info pamphlet and so many websites said don’t drink before and when taking MTX. Some countries guidelines are a bit more flexible. But I decided to make my liver as clear as possible to see what the methotrexate did in blood tests. Once the liver shows no problems and is stable, then I’ll reintroduce a glass of home-made mead in between the tablets.
No pain killers - Supporting the liver function also meant no paracetamol-based pain killers (the only one I had left - ibuprofen and novamin are both to be avoided on MTX). This has been very very, with the climbing pain from prednisolone withdrawal and the headaches (now a constant 6, with spikes to 9). Again, once the liver shows it’s stable, I’ll carefully restart pain control.
Not being allowed to take novamin will be tough - nothing else has had an effect. Plus it really helped the endometriosis pain. Bah.
Drink lots of water - For the migraines, I had been drinking around 2L of water per day, so my kidneys are doing well.
My dose is one 15mg tablet, with no tapering up.
The pharmacist said to take methotrexate an hour after food, and nothing milky when or after taking it.
The doctors all recommended to take methotrexate at night so that if you do feel nauseous, the worst will pass when sleeping. I have only felt my ‘normal’ level of nausea, thankfully. Although, I am noticeably less hungry.
They also recommended no folate for 24 hours before or after - folate blocks methotrexate and vice versa. So no multi-B vitamin for those two days. After 24 hours, a 2mg dose of folate is meant to lessen or stop many of the common side effects.
Some people prefer to take it on a Friday so they can sleep the weekend and side effects away. Others prefer it mid-week, so they are ok for the weekend. As work is nonexistent at the moment, and family visits are usually on weekends, I chose a Wednesday night.
First methotrexate tablet - side effects
I didn’t sleep well the first night, but I think that was mostly anxiety.
The day after, the fatigue hit.
I haven’t felt this exhausted since starting gabapentin. I can hardly even think straight, and even struggle to finish sentences. It blasted away the residual prednisolone energy and turned me into a zombie.
For the next 4 nights, I slept long. Without waking up during the night. Unfortunately, normal insomnia returned before the second dose.
I can’t tell whether the accompanying bad and constant headache is a side effect, or if it comes from my neck. Physio hasn’t helped, so it might be a side effect. I’ve had a few strong migraine-like spikes in the temples and extremely blurry eyesight, occasionally with sparkles clouding my vision.
My balance is iffy at the best of times, but is much worse at the moment.
Nerve pain, numbness and tingling in extremities has made a surprising return. 2008 and 2011 were the last times it was so obvious. No idea if this is a side effect of methotrexate, or perhaps from prednisolone withdrawal (rising inflammation).
Bowel cramping has been much worse. But that can also be due to anxiety, uncontrolled inflammation, withdrawal of novamin or endometriosis playing up.
For a day or so after taking each methotrexate tablet, the thirst has been overwhelming. Normally, I have to force myself to drink to meet that 2L daily quota, but it’s easy to power through 2-3L in the 24 hours following the tablet. Good for the kidneys.
My mouth has been showing signs of developing ulcers, irritated skin throughout. I had ulcers constantly as a teen, so I know I’m susceptible. At the moment, I’m just swishing salt water.
Pain + exhaustion means I haven’t gotten anything done. Writing is impossible. Even crochet is difficult! I have been reading a lot, or rather, listening to audiobooks. And skipping back to listen again and again - what concentration?
Continuing on methotrexate
My first liver and kidney blood test results come in soon. Tests will be weekly for a bit, then fortnightly, then I get to see the rheumatologist.
Providing everything looks good, I’ll be continuing, and hoping that it will stop the permanent inflammation of spondyloarthritis.
Update: first blood test looks good, raised white blood cells from the prednisolone and inflammation markers, as usual. I seem to be subconsciously stressing, so this is welcome news.
How did you react when you started methotrexate?
Did you get any good / bad side effects? How were your blood results?