New Chinese Curse: May You Have An Interesting Disease

It has been two months since I started the drug methotrexate for my systemic sclerosis (scleroderma). I put off starting the drug for a few months as I was concerned about potential side effects (well, for one thing, it increases the chance that I will develop cancer. Since I’m now at high risk for lymphoma that kind of gave me some pause…), but struggling with fatigue and other annoying symptoms I finally made the call to my rheumatologist and started on the drug.

The first month was a little hard; nausea, headache, more fatigue, and what I called the dizzy-wobblies. My hair started falling out. By the second month, however, I began to notice that my muscles had stopped hurting. I had more energy. The edema in extremities was definitely much better. I was out of the house and doing much more. Hey, this is improvement. Go methotrexate! I was ready to make the pom-poms and sign up for the cheer squad.

Then more downsides began to emerge in the second month. I started to notice that my knees really hurt the day after I took the methotrexate pills. As always, I checked the Internet to see if anyone else had noticed this. Yep. It’s a thing.  I decided to baby my knees a couple days a week and to keep on with the drug. Then my back started to hurt, I noticed a rash on my arms the same day that my knees hurt, and itching became a thing. My ribs started up with shooting pains. The pain spread to the entire right side of my lower ribs, I struggled to breathe and it was hard to raise my arm. Yikes!! The pain was so widespread it didn’t seem reasonable that it was just a cracked rib…

IV in arm.
Here I am with the IV tapped off so I could make the trip to the CAT Scan machine.

That’s how I ended up at the acute diagnostic center run by Kaiser for we after-hours folk that don’t want to go to the ER. (The ER has sick people. When you are on immuno-suppressants you avoid sick people like the plague!) The nurse was nice. The doctor was great. The words “possible blood clot in your lung” and “we want a CAT scan right away” were said. I would have been more upset if they hadn’t also just said “we’re giving you morphine to get this pain under control”. I would have hugged that nurse if I could lift my arm.

Then she blew it. As she stuck me with the needle to start the IV she said, “I once worked with someone who had scleroderma so I’ve heard of it before. Such an interesting disease. She did develop heart problems though, which was sad since she was so young.” Great. This is sort of like a Chinese curse: May you have an interesting disease. I grumped about her comment to my son who was there with me. “Well, you have to admit, it is kind of interesting,” he said.

Aside: It is an interesting disease. One of the great ironies of my life is that I have a degree in molecular biology and once worked in a rheumatology research lab on a scleroderma project. My boss Dr. Angeline Douvas and I at that time used the auto-antibodies from scleroderma patients to capture and identify the protein SCL-70 (topoisomerase). We spent a lot of time speculating about what was going on in these patient’s genes and why that was manifesting itself the way it was in their clinical symptoms. We were suspicious that it might be triggered by a virus. Here’s the paper: I’m the second author. Angie would find my diagnosis to be so interesting but she passed away in 2000 before I became sick. Yep, it is all so interesting. Anti-centromere antibodies! What the heck is going on here?! This is an important disease that should be researched not just for a cure to help people who have it, but to also gain essential understandings about cells and genes that can be used in the treatment of many other diseases. As it turns out there is a bill in congress right now concerning scleroderma and fibrosis research and you can contact your congressperson using this link.

Still, I found the nurse’s interested detachment from my personal situation to be somewhat appalling. Still in pain I was wheeled off for the CAT scan, and then waited for my chat with the doctor. NOT a blood clot. NOT my liver. They could see old breaks in my ribs (thank you osteopenia) but NOT a current one. It turned out that it was inflammation of the cartilage in my ribcage, a condition called costochondritis. It’s a scleroderma thing, just another bump in the road when you are dealing with a complex medical condition. Fabulous. The Internet tells me that it usually resolves within a year. OMG! A year??!!! That’s a lot of pain killers! Oh wait; that’s a lot of knitting! Best to look on the bright side.

The next morning my rheumatologist’s office called to let me know I should stop taking the methotrexate. Farewell, methotrexate. It was nice getting to know you but you didn’t play nice with my cartilage. I now have an appointment with my rheumatologist on the 20th and he will discuss my new drug options with me then. I’m sad to let methotrexate go, but so glad that there are other drugs out there waiting for me to try them out.

Just another day in the life of an interesting disease.

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

16 thoughts on “New Chinese Curse: May You Have An Interesting Disease”

    1. Today my ribs are sore but much, much better than last week. Looking forwards to the next drug. I hope your JRA is behaving itself as I’m pretty sure it isn’t any fun either!

  1. I’ve had costochondritis and it was the most painful stuff ever! It hurt to breathe, it hurt to move my arms, anything that engaged my chest muscles was agony. Hope you feel better soon and keep up the pain meds! 😍😍😍

    1. It was just not nice! I am still sore today but not dealing with anything like the issues of last week. I’m still taking a pain pill at bedtime so I can get some good sleep. 🙂

  2. I love your humor through all this – even with the grumps. I have Lupus and agree that diseases can be interesting. I hope you are able to keep your spirits up as you go through all this.

    1. So sorry you have lupus. 😦 If we don’t cling to humor it would be overwhelming, wouldn’t it. I’m always shocked how quickly things can take a turn for the worse; OK in the morning, in the ER that evening type stuff. Humor goes a long way when life is so darn unpredictable. I also take my knitting, a book and the essential electronics with me in the car on outings. 🙂

  3. Wow. That sounds like a tumultuous healthcare visit. While I’m glad to hear it wasn’t a clot or any of the other things, and that they are taking you off of the medicine, it still stinks you are sick.

    I am inspired by your positive attitude though- just one reason I follow you here! So thank you.

    1. I was so glad that my son came to help me with it. For a while there it looked like I wouldn’t be able to drive myself home.

      I am trying to deal with this with grace and humor. My mom was a great role model. No matter what she got up every morning with the thought, Onwards! Blogging really helps. 🙂

  4. It’s so interesting that you’re sick and could die of your illness. Lordy lordy.

    For what it’s worth, there was a study published a while back that indicates that: Taking medication to treat lupus (like MTX I believe) does not significantly increase the risk of lymphoma. Link:

    I’m sorry the MTX didn’t work for you after being initially so nice. I know exactly what you mean, I was on several of MTX’s little pals over the years and they all seemed so friendly in the beginning before the side effects introduced themselves. Bummer. I’m on a biologic now, much nicer to me. Hopefully your doc has an awesome trick up his / her sleeve for you!! Keeping my fingies crossed.

    1. That’s what was so appalling! I realized they didn’t understand the potential for life threatening complications. The doctor gave a little pep talk about how other illnesses (lupus) can be much worse or even fatal. I wanted to bonk him on the forehead! That was like telling a breast cancer patient that pancreatic cancer patients are worse off. If I can face down a reduced life expectancy why can’t these health professionals?

      I anticipate the rheumatologist will put me on CellCept, but I would like a biologic.

  5. I realize this is a three-year-old post but I wanted to wish you well. Dr. Angeline Douvas (now deceased) is my aunt.

    1. Thank you so much for leaving a comment. I tried to locate Angie when I was first diagnosed and was so shocked to discover that she had passed away. I’m sorry for your loss; she had an amazing intellect and a wicked sense of humor.

      I am doing well. I had more bumps in the road over the last few years, but am in a better place now thanks to great drugs and caring doctors.

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