My experience with IgG4-RD treatment has been positive overall

Note: This column describes the author’s own experiences with Rituxan (rituximab) and Uplizna (inebilizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I have immunoglobulin G4-related disease (IgG4-RD) that presents in the orbits. I had eyelid swelling from 1990 to about 2000, but that seemed to burn itself out. Then I started to experience double vision. I was on high-dose prednisone for about five years, but abandoned that treatment due to lack of results. After I was officially diagnosed with IgG4-RD in 2015, I started Rituxan (rituximab) infusions.

I had to get my infusions done at the local hospital. I was pretty nervous the first time, but the nurses were great. They told me that Rituxan was considered “liquid gold” and was being used to treat many different autoimmune conditions.

I tried to make the best of it. I was put in a semi-private room and was able to order “room service” — whatever and however much I wanted. So, I ordered a full breakfast and hydrated myself pre- and post-infusion with miso soup and tofu. While the process took all day, I was pleasantly surprised that the only side effect I experienced was fatigue for a day. I thought to myself, “Well, that was not bad at all!”

I later learned that, like any drug, Rituxan has pros and cons and some possible side effects. However, after 10-15 infusions over 10 years, I feel positive about the drug. My serum IgG4 levels had decreased from 600 to 150 mg/dL (normal levels are generally under 135 mg/dL) and remained stable. I had less pressure in my eyes, and the swelling had not returned.

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Late last year, my rheumatologist recommended Uplizna (inebilizumab), which had been approved by the U.S. Food and Drug Administration in April to treat IgG4-RD. I was excited to try something new because, although my IgG4 levels were stable, they were still slightly elevated.

I was also starting to experience severe dry eyes. I had to lie down and close my eyes at times because it was too painful to keep them open. Some days, it felt like there was a big grain of sand in my eye; other days, it felt like cotton balls were rubbing the inside of my lids raw. My eyes were bloodshot, and my acuity was becoming an issue on top of the double vision.

Last December, I took my first dose of Uplizna. The infusion took only 90 minutes compared with the four to six hours required for Rituxan infusions. With Uplizna, the initial dosing required a second infusion two weeks after the first, and now I need only one infusion every six months. Rituxan involved two infusions, administered two weeks apart, every six months. Uplizna has been a game-changer in terms of time.

In addition, I haven’t experienced any side effects other than fatigue, similar to my Rituxan treatments. The day after my infusion, I was totally fine. Since starting the new medication, my eyes haven’t been as dry, and my acuity has improved.

Because Uplizna is relatively new, and there are no generic biosimilars available, the treatment is much more expensive than Rituxan. Most health insurance plans also require prior authorization, and not all doctors are familiar with IgG4-RD or Uplizna, which can make access difficult. In my case, I had to fly from Hawaii to California to access the treatment.

Another note of caution: My infusion provider’s contract with my insurance company did not include Uplizna. Though I began treatment last December, we are still working to resolve insurance coverage and payment. I hope to get this taken care of soon.

It’s crucial for everyone to work with their healthcare team to find a treatment regimen that works for them. Comfort and insurance coverage are important to consider, too. I’m at the age where I have to start thinking about Medicare. While I know of one person who got Uplizna covered under Medicare, I need to vet that myself.

I wanted to share my experiences with the different medications I’ve tried. I invite you to share your own experiences with IgG4-RD treatment in the comments below.

Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.