At my first appointment with rheumatology in early January, I was prescribed two medications for Sjögren's syndrome. I was prescribed hydroxychloroquine to help with inflammation. I was also prescribed pilocarpine to help with dry mouth.
I tried the pilocarpine first, so that I would know if any side effects were caused by it. I wasn't expecting anything awful to happen.
1/10/2025: I took three pilocarpine at intervals throughout the day as directed. They didn't help at all.
1/11/2025: I again took three pilocarpine with no improvement in moisture level. Rashes developed and quickly worsened on my upper left arm, stomach, chest, upper back and neck, one leg, right arm, and lower scalp. The rash consisted of small pinpoint red bumps that itched terribly.
I quit taking the pilocarpine as soon as the rash began.
1/12/2025: I took one dose apiece of four name-brand antihistamines, scattered throughout the day. The rash worsened.
1/12/2025: I decided to go ahead and try the hydroxychloroquine since I figured it might calm my body down. Hydroxychloroquine is an immune suppressant. I took one capsule, which was half of the prescribed dose.
1/13/2025: The itching was not as bad. I took four doses of antihistamines and one capsule of hydroxychloroquine.
1/14/2025: The itching improved some more. I took five doses of antihistamines. I took the third dose of hydroxychloroquine.
1/15/2025: I took the fourth dose of hydroxychloroquine first thing in the morning and more antihistamines. My rash and itching continued to improve until afternoon and then exploded again. Between 4 PM and 5 PM that afternoon, large rashes popped up all over my stomach, chest, entire back, upper hips, upper thighs, neck, and scalp. The edges of my face began itching, and I had intense itching over most of my body.
This rash was different from the pilopcarpine rash. The pilocarpine rash consisted of small individual bumps scattered all over my body. The hydroxychloroquine rash consisted of large solid areas of rash that itched even worse than the pilocarpine rash. It was awful.
I quit taking the hydroxychloroquine immediately.
I cannot overstate how horrific the hydroxychloroquine rash was. On two different days, I came very close to going to urgent care or to the emergency room. The itching was unbearable. I even scratched so hard a couple times that I made myself bleed a little. After around a week, the rash very slowly began to subside.
To be clear, I had no swelling of the throat. It was not life-threatening, just unbearable itching.
As a result of this debacle, I am taking no medication for Sjӧgren's syndrome. I don't want to be on any of the DMARDs (Disease-Modifying Antirheumatic Drugs), since they all sound dreadful.
My main problems are dryness of the mouth and eyes. I do not yet have any organ involvement or neuropathy.
I have been upping my omega-3 intake to try to improve my dryness.
