The Never-Ending Sinus Infection
Living with a chronic disease is a bummer. Taking medications that leave you immunosuppressed is a bummer. But when those medications keep the chronic disease from progressing, that’s PRICELESS!!
Sometimes those priceless meds can keep you from getting well as soon as you’d like when you get sick. That’s my story of last year. I’m only now sharing it because it’s taken months for me to feel like the ordeal of the never-ending sinus infection is finally past.
A series of problems
Mid-July, I got sick. It was basically an eye infection accompanied by a UTI. The urgent care doctor prescribed some antibiotics and I started to feel better within days. A week later, I had my Rituxan infusion without complication.
A week after the infusion, I traveled to Oklahoma for a funeral and developed another infection. This time it involved both eyes and I was congested. Fortunately, both cleared up enough to get my 2nd Rituxan infusion of that round on schedule.
A sinus infection that refused to leave
Then just a few weeks later, the real ordeal began. I developed a sinus infection. It refused to be tamed in August, in September, and in October. By November, my primary care doctor advised that I see an immunologist. This was getting out of control. If allergies were the cause of my problems, yay, I could do something about that. If a wrecked immune system was the cause, well, that might be more challenging.
Testing for allergies
First, we tested for allergies which involved getting pricked with pins laced with different common allergens. The doctor did this on my back and then on my arms to see if my body would have a reaction. The good news = I was allergic to NOTHING. (That was a total surprise, to be honest.)
A test to measure immune function
Next, the immunologist ordered several laboratory tests to measure immune function. No surprise, my CD19/20+ B-cells were at zero which is what they should be while on Rituxan. My overall immunoglobulin G levels were low, but not low enough to be of great concern and definitely not low enough for IVIG (intravenous immunoglobulin replacement) therapy.
Antibiotics & steroids for treatment
After all of this testing was complete, my sinus infection proved that it wasn’t yet gone and I started round 5 of antibiotics. The immunologist ordered a CT scan of my sinuses once the antibiotics were complete then referred me to an otolaryngologist (i.e., ENT doctor).
Several rounds of antibiotics
This new doctor prescribed two types of steroid nose drops to reduce inflammation. He took a swab of the gunk in the back of my nose to culture and subsequently prescribed antibiotic round #6. Apparently a very common bacteria had taken hold of my nose and just wouldn’t let go.
I thought that, finally, things would be good...unless the infection yet again proved that it was still there only about a week after I finished this antibiotic. I called the office because the infection was not gone! My new doctor was on vacation but his colleague prescribed antibiotic round #7. This time, we went with 14 days of Levaquin (basically 2 rounds back-to-back).
Levaquin is a scary med and one which my rheumatologist later told me that she has NEVER prescribed to a patient. The medication is well known for powerful side-effects such as the risk of spontaneous tendon rupture. Not exactly the type of medication those of us with RA should be taking lightly.
Was the infection starting to clear?
My next round of Rituxan got bumped as I was still taking this antibiotic. My rheumatologist insisted that the infusions be postponed until the infection had resolved. My first thought was, “Gosh darn it, it’s been since July and this infection is still not resolved. Why should I have any hope that it will be gone before the month is out?”
Continuing to place my RA treatments on hold
After living through the aches and pains of the antibiotic (trust me, there is pain involved with this med) and while putting my Rituxan and methotrexate on hold, I finally started to begin to feel better. I finally got to get my Rituxan, but I was still on edge wondering if the infection was still lingering.
Once I finally made it 14 days after finishing the antibiotic without noticing an obvious festering of infection, I felt free at last!! A month later, the pains from Levaquin started to subside as well.
Immunosuppression and infection risks
Throughout this whole ordeal, I had all sorts of concerns regarding the level of immunosuppression that Rituxan and methotrexate may have caused after being on the therapies for 10 and 12 years, respectively. I was worried that my immunoglobulins would have tested so low that I would need IVIG therapy.
Worse yet, I was worried that I would have to stop taking either of my favorite RA drugs that had made such a positive difference in the course of my rheumatoid arthritis since diagnosis.
It’s amazing how attached we can become to the therapies that keep our diseases at bay. I was almost to the point of tears when the infusion nurses told me that I had to go home in January and come back later.
Have you experienced a situation that threatened to turn your RA management on its head?Immunosuppression, insurance coverage change, lack of access to healthcare services, etc? Please share in the comments.
Thanks for reading!
Lisa
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