For the past five years, I have been on a combination of medications that has worked, been the most consistent, and lasted for the longest period of time since I was diagnosed with lupus and RA. I can’t explain how grateful I am for that, especially given that it is so much more difficult to find treatments that work, having multiple autoimmune diseases, and trying to find treatment regimens that don’t help one disease at the expense of the other.
But that is all about to change…
When I saw my rheumatologist a few weeks ago, he informed me that Quinacrine is no longer being manufactured due to an import stop by the Food and Drug Administration. As a result, I will no longer be able to take Quinacrine. The only other option is Hydroxychloroquine/Plaquenil, which didn’t really work for me and caused chronically elevated liver enzymes.
My rheumatologist stated that since I hadn’t been on Hydroxychloroquine/Plaquenil with Imuran before, that maybe in combination, it will work better than it did before. But then in the same conversation, my rheumatologist told me that I likely won’t be able to stay on Imuran when I want to get pregnant.
I talked to my gynecologist to confirm this, and he stated that Imuran is a Class D medication, meaning that it has been deemed not safe to use during pregnancy.
So with the Quinacrine shortage and Imuran being out for pregnancy, where does that leave me? Everything is being upended.
It feels like several years of being sick and trying to get a diagnosis, six years of trying to find a treatment that worked, and another five years of being on a treatment that worked, is going up in smoke in a matter of months. It feels like a lot of hard work for nothing.
I’ve struggled through medications working at first and then suddenly not working. I’ve dealt with unpleasant side effects that I was willing to put up with in the name of feeling okay. I’ve suffered through medications that have helped my RA only to make my lupus flare, and medications that have helped my lupus only to make my RA flare. I’ve handled medications not working at all.
And of course, this would all obviously be somewhat easier if it weren’t for the fact that I have multiple autoimmune diseases to contend with.
I know that this is a struggle that most of us with these illnesses share. But honestly, nearly 12 years after my diagnoses, I don’t really feel like the medical community knows more now than they did then.
Quinacrine is off the table. No one has a solution for that other than to take a medication that previously hadn’t worked or to suffer through without anything.
And Imuran is soon to be off the table due to wanting to get pregnant. My gynecologist said that if I can live without Imuran, I definitely should. I’m not going to risk taking it.
So I asked my gynecologist if I should prepare for the longest nine months of my life. His answer? Yes.
So there you have it. I’m back in the same place I was 12 years ago. Back then, though, no one would talk to me about pregnancy because it was “just hypothetical”. Now, at least they’re willing to have the pregnancy conversation, but I don’t really like what I’m hearing.
I don’t know what my life will be like without these medications. I can barely go a day without them before my immune system goes into overdrive. So we’ll just have to wait and see.