serious as a heart attack

When I tell people that Mo is taking short-term disability they ask me if he’s sick like before. I don’t know how to answer that, because he’s been sick the whole time since before. It’s what people forget about autoimmune diseases, they don’t go away. Unless they come up with a cure for myositis, Mo will technically be sick for the rest of his life.

“Remission” – Our doctor told us he doesn’t like to use this word because it is misunderstood. We’ve used the word out of convenience, but it has confused people. What we should say is that Mo has been “flare free” for the last seven years. When you think about cancer going into remission, you visualize the tumor dying or being removed from the body, and that no cancer cells are regrowing or spreading into other organs or tissue. In the case of myositis, your immune system more accurately goes into “suppression” because your immune system can’t go anywhere. It’s part of you. You suppress the immune system, you don’t get rid of it.

“Flare” – A flare is a severe or sudden onset of symptoms of your autoimmune disease. Flares can be caused by stress, environmental factors, or changes in body chemistry (think big body swings like pregnancy, stroke, etc). Your immune response to those changes spikes, and like Nigel’s amp in Spinal Tap your flare goes “all the way to 11”.

 

Mo takes drugs every day. Every single day.

When I tell people about the drugs that Mo has taken ever since he was first diagnosed, they don’t quite get how the drugs and disease affect each other. So let me try to explain:

When he was sick in 2007 he went through different drugs to find the chemical balance in his immune system to suppress it’s reaction to the disease. Those included, Prednisone, Imuran, and eventually Rituxan. The trick was finding the right balance of the drugs to kick his immune systems into “suppression”. He was on high doses of Prednisone in the beginning, then tapered that down as he added Imuran. Then he got big blasts of Rituxan (by infusion) when the mix of the other two drugs wasn’t controlling his symptoms. Once his immune system was back in check, he was able to eliminate Prednisone and Rituxan from his treatment and control his disease with a fairly low dose of Imuran.

Now that Mo is in flare we are going back to the big guns. Previously Rituxan, but this time the drug is Acthar.

When I explain to our friends what that’s like, I use the analogy of a heart attack. Here’s how it goes – When you have a heart condition:myositis, you might take a baby aspirin:Prednisone/Imuran every day to help prevent a heart attack:flare. But when you are having a heart attack:flare, you need to use nitro glycerin:Rituxan/Achtar to handle the reaction. Hopefully the nitro glycerin:Rituxan/Achtar is enough to shock your heart:immune system out of the heart attack:flare and you’ll be able to go back to your daily maintenance routine of the baby aspirin:Imuran.

It’s not a perfect analogy, but it gets the point across. And I like it because Mo’s autoimmune disease is as serious as a heart attack to me.

 

 

 

 

 

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2 thoughts on “serious as a heart attack

  1. Hi Nicole. You make an excellent point that no one with any form of Myositis goes into remission. With Dermatomyositis and Polymyositis, your best hope is that your doc can find the right balance of meds to control the disease. With Inclusion Body Myositis, you can only hope that the progression is slow since there is no treatment for it. In my case, I was initially misdiagnosed with PM in 1990 and put on a fairly heavy dose of prednisone. After a few years, my CPK readings dropped to fairly good levels (they continued to be above normal but never too high). My rheumatologist at that time told me my PM was in “remission” and tapered me off the prednisone. At that time, I figured I was “cured” and put the disease out of my mind. Several years later, I noticed that my arms and legs were slowly getting weaker in spite of working out with a personal trainer at a gym. In 2006, my primary care doc sent me to a neurologist who ordered a muscle biopsy which confirmed that I have IBM, not PM. There is no such a thing as “remission” or a “cure” with IBM as well as with DM and PM. John

  2. Thanks, John. We want to believe Mo’s better when he gets the meds down, but myositis is always lurking. I think it’s hard to think of someone as sick when they “look” alright. Our good friends and neighbors are going through treatments for lung cancer right now, and when people tell Terry that she’s looking good she thinks “yes, but I feel like sh*t””. Kinda the same thing with us right now.

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