Detours on the Road to Healing

If something rare and difficult can happen, it usually finds its way to me.

First, I was diagnosed with a rare condition that affects about 75,000 people in the U.S. Then, after starting a treatment protocol that seemed to help, I finally got back to being more active last year. Things were looking up—until the treatment stopped working.

From there, a new plan was put into place: IVIG infusions, which have a high success rate for people with my condition. I had my first two infusions on April 25 and 26. At first, the side effects were pretty standard—flu-like symptoms. But then, the day after my second infusion, a rash appeared on my arms. It slowly spread to my legs, sides, stomach, and neck. It looked dramatic, but thankfully didn’t itch or hurt.

I reported it to both my local doctor and my team at Vanderbilt. Neither had seen this type of reaction before. I was referred to dermatology for a biopsy, but by the time it happened, the rash had mostly cleared and the results came back inconclusive.

Rheumatology scheduled me to be seen virtually on May 28, but I refused to wait that long to receive answers. I found out—through a casual MyChart message from the nurse—that my treatments had been stopped without any prior discussion. No call. No heads-up. Just, “You won’t be going to those appointments.”

Naturally, I had questions—lots of them. I asked for the appointment to be moved up, and had a virtual visit this afternoon. I explained that I’m active in multiple Facebook groups for people with myositis and for those on IVIG. One of the groups is moderated by a nurse with 40 years of experience, trained at Johns Hopkins (which happens to be the top treatment center for my condition).

Through that group—and research—I’ve learned that skin reactions to IVIG are documented and not typically a reason to stop treatment. In fact, I even sent my doctor some of those articles. I told her I didn’t want to give up on IVIG just yet.

To her credit, she agreed to refer me to an allergist/immunologist to help determine if it’s still a safe option. Often, skin reactions can be managed by slowing the infusion rate or spacing treatments out over a week. What likely happened in my case is a hypersensitive reaction, which often improves with continued treatment.

In the meantime, though, all IVIG is on hold. One of my current meds is being increased, and we discussed adding another if needed. For now, I’m stuck with the pain and weakness until we sort this out.

I did not see this coming. I had so much hope for these infusions—and despite all of this, I still do. But this week has been one of those where I just want to scream “FFFFF*CCCCKKK!!!”**

I’m exhausted. Exhausted from advocating for myself constantly. Exhausted from having a condition so rare that most local doctors don’t know how to treat it. Exhausted from my doctors not communicating with each other. Exhausted from having to rely on Facebook groups for accurate, helpful information.

At this point, I’m seriously considering going to the Cleveland Clinic or Johns Hopkins if I can manage it. They have top-rated myositis centers, and I’m starting to think that level of expertise may be the only way to truly move forward.

Thanks for letting me vent. I needed it.