Everything happened really fast when I was first diagnosed with scleroderma and Sjogren’s Syndrome. I had been referred to the rheumatologist after the results of bloodwork that my PCP ordered up. The rheumatologist did an exam and some tests, told me that I had the form of scleroderma called limited systemic sclerosis, and was evasive when I asked him what this would mean for me in the long term. What would my life be like in five years, I asked. He said he needed to run some more tests and would get back to me. He also told me to stay off the internet.
Well, that was kind of ominous, don’t you think? My first clue that this might be rather serious…
I was given a prescription for a disease modifying drug (DMARD) called Plaquenil, a handful of pamphlets, and referrals for additional testing. Lots of testing. Waiting for my prescriptions to be filled I went to the lab to get blood drawn and then sat down to call to make appointment for the additional testing I needed. It was hard to not feel like the sky was crashing down on me.
After 6 months of the drug Plaquenil I was feeling better, so I was a little shocked when the rheumatologist told me that it was time to add additional drugs and that he was going to give me the choice of methotrexate or CellCept. He handed me information on the drugs, ordered more blood tests to determine the state of my liver, and told me to call back in a week to let him know which drug I was comfortable with.
Of course I went straight to the internet. Hello. Science girl here. How should I make a decision without more information? Time to put all that chemistry and molecular biology to work!!
Ugh. After researching both of these drugs it didn’t look too good to me. Methotrexate is actually a chemo drug, given in a lower dose to rheumatology patients to suppress the immune response. I would need folic acid to try to minimize hair loss and other side effects, and it would knock me on my butt for a day or two each week. CellCept also suppressed the immune system by another pathway, had fewer side effects, more risk of cancer, and was really hard on the stomach. Both drugs had definite downsides. I would need to stay out of the sun to prevent DNA damage. My risk of serious infections, including PML, a fatal brain infection, would go up. The side effects of methotrexate seemed to be worse to me, but the CellCept would be awful on my gastritis…
If I chose to remain untreated with either of these drugs my chance of developing a fatal complication from scleroderma went up. I was already in the early stages of interstitial lung disease and pulmonary arterial hypertension, both of which could be fatal, so I really did need to try to slow things down with a drug…
Ugh! I was feeling pretty helpless about making the decision. What should I do when the future was unknown? Everything was a gamble and I didn’t have any really good choices.
I called my rheumatologist and told him I wanted to try methotrexate because I was pretty sure that I wouldn’t be able to handle CellCept. It was done.
This whole process was kind of awful. Just knowing how these drugs worked and their side effects wasn’t enough. I needed more info. I needed to hunt down research studies.
7 thoughts on “Science and the Scleroderma Girl: Hard Choices”
Have fun at the festival!! Hug sheep and buy loads of yarn:)
I think it’s awesome how you’re doing this series b/c it may ring with or help someone out. You have been through such a journey that morphs into different paths over time. I’m really impressed with all that you have done to live the best life you can.
Have a blast at the festival; I’m looking forward to reading about it.
That’s my hope. There is so much false information out there and so many desperate patients I feel that if I can empower even one person to feel more self-confident in how they handle their chronic illness it will be worth the effort. 🙂
All such a shock
It was, but that is life. 🙂