All right, so I know the theme of my last post was gratitude, and it's something I have been trying to hold onto tightly throughout some trying days over the last few weeks. Nothing major or life-changing, but just minor annoyances that don't feel so minor when you are going through them.
First of all - the rash is back. Now the rash in and of itself isn't a huge deal; it's itchy as hell, and I find it embarrassing, but rationally, I know it's nothing that makes people stop and stare. It just looks like I am chronically sunburned on my face, upper arms, hands, and chest. And once it starts, it tends to spread. But the real problem with the rash is what it represents - a dermatomyositis recurrence.
I never know if I have days, weeks, or months before the real problems start; the muscle weakness and pain, and/or the fever and fatigue that hit me in the face so hard I can't get out of bed for love or money. Literally. Every twinge, every morning I wake up tired, I wonder if it's starting again.
So what does it mean? It means returning to IVIg infusions, and/or steroids until the symptoms resolve, on top of my other immunosupressants, Imuran and Plaquenil at their respective maximum doses. Unfortunately, my rheumatologist would prefer to keep the IVIg in "reserve" for emergencies or severe relapses. Which, so far, this is not.
So prednisone. Now, I am a pharmacist, and I knew all about the side effects of prednisone, just like I know all about the side effects of blood pressure pills, antidepressants, etc. However, in my experience as a patient - the difference between prednisone and other drugs is that most of the side effects you are warned about aren't a "might happen" but a "will happen" scenario - it's just a matter of when. For most drugs, common side effects happen in less than 10% of people. So really, most people don't ever experience side effects from most drugs, or if they do, they are often transient. Or there is another alternative to switch to. None of this is the case with prednisone. I do not know anyone on chronic, high-dose (1mg/kg/d or more) prednisone who has not experienced weight gain, increased appetite and cravings, heartburn, mood swings, trouble sleeping, increased blood pressure/blood sugars, and reductions in bone density. Obviously there are varying degrees of all of these, and a lot of other fun side effects that are common too, but I have yet to talk to a rheumatic disease or cancer patient who does not develop at least these while on prednisone.
I am one of those patients who REALLY does not do well on prednisone. Specifically mood issues - anxiety, depression, sleeplessness. I am a bit of a perfectionist to begin with, but the prednisone brings out my latent OCD in full force. Example: I was lying in bed, still awake of course, at around 3am one night, and all I could think about was the fact that all of my mugs were not facing the same way in my cabinet. Finally, I had to get out of bed and fix this. While I was at it, I cleaned and organized all of my cupboards, and was still at it at 9 the next morning when my husband left for work.
In short, me and prednisone do not get along. Needless to say, my husband is also not a fan of me taking prednisone. So IVIG is always preferable to me.
Not that IVIG doesn't have its own drawbacks. For two working days a month, I have to lie in a hospital bed for 6-8 hours like a sick person, doped up on Benadryl and painkillers to stave off infusion reactions. Generally, my IV site hurts because the solution is very viscous (also, if I have been on prednisone my veins are shot and it takes a few tries to get a good site. Each leaves massive bruises). So for two days a month, I am entirely out of commission, which is not convenient at best. I do this for three months - but usually after 1-2 months, I am almost completely better. It's miraculous. So those awful 2 days per month don't seem like such a huge price, when it means I get to keep my health and my sanity.
Now unfortunately, this isn't always the easiest thing to coordinate. First of all, I have to convince my rheum that I need treatment, which isn't always easy, because as I said she likes to keep it in reserve. Fortunately, she agreed to it this time with only minor cajoling on my part. Also, my rheum has to be on-call both days I am getting the infusions, and they have to be two days back-to-back. Unfortunately, my rheum is away the rest of this week and all of the next - and I am away the week after that. So I can't get in for treatments until June 7th! Which means - prednisone and praying that holds the rest of the disease at bay. And that I don't lose my mind completely in the meantime. Wish me luck!
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