Too good to be true..?

Lees deze post in het Nederlands. This post is part of a series. Start reading here!

Slightly bewildered I shoot upright, flooded by the same uneasy feeling that’s had me in its grip the whole week. Like someone is pranking me and I cannot trust my own senses. Like even if I am not being fooled, this will be over soon. It feels too good to be true and that keeps me from feeling as happy as I should.

I run my hands through my hair and stroke my soft, rash free neck. The effects of years of scratching are still noticeable, but the wounds have disappeared. I expect to feel a wide array of things, but I don’t. No itch on my shoulders, no pain in my hands, no tight scalp. It reminds me of phantom pains. If you are used to experience your body in a certain way for years, it is hardly possible to accept a radical change like this. I just can’t get used to it.

One month ago, I took the first dose of Methotrexate. Nervous for the effects, aware of the weight of my decision and desperate to get rid of the itches. A day went by and then a week, but nothing happened. I knew it was a slow drug, but the fact that I was still struggling and using tar ointment after two weeks was a bit of a downer.

But eventually the effects came, obviously, the negative ones first. An upset stomach, a bloated feeling –read: farting– and a major deviation in texture of my stool. These would later prove to be permanent guests. Then I noticed that my skin was calmer and the itchiness was not as intense. Until I woke up today and, for the first time in years, the eczema had disappeared from my neck. Shocking!

Regular check-ups in the hospital showed that my liver and kidneys could handle the medication, so I could continue to take the pills until the three-month-point on which the effect should be optimal. It is obvious that this does not mean that the medication is not dangerous; the cramps I’m having are no child’s play. I am also retaining water, which explains the abrupt weight change of three kilos.

But hey, my skin is REALLY A LOT BETTER. It almost felt like my eczema slowly melted away. Especially the fact that I (almost) got rid of all the itchiness makes an enormous difference! No scratching means healing wounds, means a stronger skin, means less itching. The right kind of vicious cycle.

What is also epic, is that my big and small coping mechanisms (keeping the house dust free, wearing the right kind of clothes, avoiding negative stimuli, washing the bedlinen, etc.) finally really have an effect. For years, regardless of doing my utter best, I could only hope for less itching. Now I am still spending a lot of energy in avoiding negative stimuli… but at least then the itchiness completely disappears for a short while. And that makes it so much easier to keep up!

Less itching also means less time spent on maintenance, better sleeping and literally spending less energy on scratching, which means that I am also figuratively more comfortable in my own skin. There’s just a fuckton of energy left that I used to spend on being ill. And this gives me the space to really recover; physically, but more importantly emotionally. Finally.

And yes, it is still a very dangerous drug with a lot of risks and a big impact on my life. For example, I am absolutely not allowed to become pregnant, up until six months after I stop taking the medication. Moreover, drinking alcohol is strictly forbidden… like… not at all… which I find a lot harder than expected, especially because I was never a heavy drinker. Something about freedom of choice. And of course, the long-term effects on my liver are still unknown.

But if you don’t mind, I prefer to not think about these things for a while and first enjoy this newly found carelessness.

-Alcohol free- Cheers!


Header image by Hanne Kause, portrait by Abel Planting.


Time for desperate measures

Lees deze post in het Nederlands. This post is part of a series. Start reading here!

So, where were we? Oh, right, my skin has been misbehaving for years, I have tried a tremendous amount of creams and finally, in agreement with my physician, I drastically changed my diet three months ago. Now my skin is better moisturised, but my eczema is still really severe and my desperation even more so. Glad to have cleared that up… But yeah… damn… what now?

Back to the hospital once again. After a long journey, during which my dermatologist continued to be hopeful over and over again, in vain I might add, he finally caved and agreed we could not continue like this. So, he started suggesting other options.

I heard about it… nobody talks about these things in my world… but there are always… Options.

Though no one managed to develop a treatment method that actually cures eczema, symptom suppressing medication is available. Or to be more precise, immune suppressing medication. Because, in fact, eczema is nothing more than a side effect of an immune system that takes its job significantly more serious than necessary. But since the immune system is unbelievably complex, and because it influences processes all over your body, it’s hard to develop a drug that effectively suppresses eczema without it having dangerous side effects.

See, again with these stupid trade-offs

For example, I have been taking antihistamines for a long time to keep my allergic reaction under control. Although this drug has very little side effects, the effect is way too superficial to really do anything against eczema. Of course, there are also less innocent drugs that work much deeper into the immune system, but these come with serious side effects. The most prescribed are Prednisone, Cyclosporine (Neoral®), Azathioprine (Imuran®), Mycophenolic acid (Myfortic® and Cellcept®) or Methotrexate.

My dermatologist gave me two options: Cyclosporine and Methotrexate. Cyclosporine is a drug that works quite fast, but you can only take it for a limited amount of time. Methotrexate takes a bit longer to be effective, but in theory I could take it as long as needed. Both medications are terrifyingly poisonous. To give you an idea, these are the most common side effects:

Cyclosporine: High blood pressure; fluid retention; headaches; muscle pain; increased risk of infections, which could lead to fever, flu, coughing, sore throat, severe shortness of breath and tinea; a light tremor in the hands; stomach and intestinal problems like, nausea, vomiting or diarrhea; risk of liver and/or kidney damage; increased hair growth, especially in the face; burning sensations of the skin; inflamed and bleeding gums.

Methotrexate (MTX): Upset stomach and intestinal problems, like nausea and vomiting, or diarrhea; gastrointestinal inflammation; headaches; rash; slight hair loss; increased risk of infections, like flu, UTI, pneumonia, tinea; disturbed blood supply; shortness of breath and coughing; risk of liver damage.

Shit… these are no Smarties…

You can imagine I was not jumping on the chance to take these. Choosing to take medication like this is a serious decision and I did not want to do it unless really necessary. So, I kept having doubts… for a Really Long Time. I had taken the flyers home months before and had read them numerous times. Again, and again, I decided that my symptoms were not serious enough, that I could wait it out, that my skin would probably improve in the summer, that my diet would hopefully be enough… and time after time, I sank away deeper and got more convinced that the time was right for desperate measures.

So, with a heavy heart, I called the hospital. My blood got tested, my urine inspected and my lungs photographed. Everything seemed in order, so I could start if I wanted to. After a lot of deliberation, I decided to choose Methotrexate. With a small voice, I asked my questions about side effects and interaction with my diet and other medication to the pharmacist. And with a big sigh and lots of hugs from my partners, I took the first dose.

Down it went…
On good luck.

Curious how this ends? Continue reading here!
Picture by Hanne Kause.