Last week, I met the Chief of Rheumatology at Long Beach Veteran’s Hospital.. She seemed cool. She had some great ideas. One of them was changing my medication from Remicade to Humira. That’s a great idea, however, not one I’m on board without some research.
Remicade has some nasty side effects; one of them is Lymphoma. Humira has nasty side effects; one of them s rheumatoid arthritis. If I take neither, scleroderma ad sarcoidosis will progress and eventually kill me.
Remicade appears to be working, so why change? I received a phne call fom the Fellow who saw me in rheumatolgy and she was ready to replace my remicade with humira as soon as this week. Well I’m not ready, and here’s why:
Like most autoimmune diseases, scleroderma is different for every patient. I’ve been blogging since 2009 and I have yet to meet another patient with scleroderma and sarcoidosis. When I started taking remicade in 2007, I did it without hesitation because I was newly diagnosed, and any new treatment option was better than none. After starting remicade I noticed a great deal of improvement right away and since that time, have progressively gotten better… Or have they?
I could be a frog in the preverbal hot water and might be boiling to death as I write this. What is a “frog” like me to do? Research, ask questions and be patient.
I stated earlier that autoimmune diseases are different for anyone. And I like my new doctors, but I am not ready to trust their recommendation without further research. I have been seen at UCLA by the same doctor since 2005, who has been managing my treatment by the Veteran’s Healthcare System. My new doctor had known me less than 20 minutes and recommended treatment change, which I would have welcomed if I had currently been receiving no treatment. I need my medical team to get to know me more before making much a big change, not only because the new medication may fail and my symptoms come back quickly, or I have a reaction to the new medication. Something that tipped me off to thinking I needed to wait was how the attending rheumatologist voiced concerns about my shaving. Yes, shaving, like wit a razor, because I could cut myself while shaving. (Yes, I’m laughing as I write this.)
If I was a doctor, and read that a patient I was seeing that day has had scleroderma and sarcoidosis for nearly 20 years, I’d assume they were frail and shaving might would dangerous for them. I know that we all make assumptions based on our experience and doctors are no exception.
There are so many variables that can effect how a patient will respond to treatment for anything. Here are some of mine:
Maybe I had more MRSA infections in 2009, because of Remicade. Or maybe it was a coincidence, because I was hospitalized in 2005 for two weeks because of MRSA infections, before I was even taking Remicade.
Maybe I will start doing even better because I live near the beach. Environment plays a big role when it comes to my health. Depression can cause my symptoms to get worse because I will crawl into bed and talk myself into staying, when I’m unhappy. Muscles atrophy, lungs do not get worked and atrophy. My health (and I know I’m not the only one) is more than my physical condition, my mind plays a big role in determining my overall health. It;s not mind over matter, it;s working with what I;ve got. Chris Dean f Life Your Way, explains this well in her post today about creativity. We can take back what we’ve lost by adapting.
Look, I know that someday, Remicade will stop working and my treatment will have to change, but I have no interest stopping Remicade if it’s working for me. If I can find data that will show me that Humira is better, I’ll definitely agree to changing. I know that I have used at least four of my nine lives. The side effects for both medications are brutal. Cancer sucks. So does scleroderma. I see statuses on Facebook sometimes that read that one disease might be easier to handle than another. My position is, they all suck. I would never take scleroderma over cancer, nor would I take cancer over scleroderma. I would choose none of the above, but oh…. that’s right… we don’t get to “choose”. So, I’m having my Remicade infusion this Friday, but not before getting tests to see if the Remicade is working or not. Then I will talk to my doctor at UCLA and discuss changing treatment options. If I was not working to be my own best advocate, I’d be worried I might cut myself shaving.