On November 7th my Rheumy called me to task and suggested I was in denial about the severity of my Sjogrens disease level.  In fact, she challenged me with an email stating that the “long-term ostrich path is rocky” for the progression of the disease and further organ damage.  If you read my last post on grief, you already know I was in a major relapse. Clearly,  it was time to pull my head out of the sand and move to a more aggressive form of treatment. Last year we had discussed biologics as the next step, so I knew that it was time to begin my Rituxan and Sjogrens journey.

Before I agreed to move forward, I needed to have an in-depth drug conversation with my Rheumy and discuss the treatment experience with other patients. I had real anxiety about the treatment because once it’s in you, it is in you for months. To cut to the chase, I had my first Rituxan infusion on December 8th and my second on December 20th.

Rituxan (rituxamab), also called MabThera

I’m not going to speak much about the actual drug because you need to do your own research and talk with your doctors about how the drug may or may not be appropriate for you.  I will say that the drug is marketed by Genentech as Rituxan in the U.S. and Canada, while Roche markets it as MabThera in other countries. (For my international readers).

I will speak about my personal concerns.

• Concern #1: The first time I try any new treatment I have a little trepidation because I simply don’t know how my body will react. I tend to react either positively, or not at all to most drugs, so I am less anxious than someone who is very drug-sensitive. But with a biologic, you can’t just stop taking the medication! That medicine is in you for a long time, and no one knows exactly how long since every body reacts differently. That’s a risk!
• Concern #2: The drug may activate dormant viruses. The one that scared me is the JC Virus; if activated, it causes a rare brain infection called PML. After I did my research, I did learn how rare this really is and I chose to move forward. However, suppressing the immune system can activate other viruses so it is worth thinking about how you will address this, if needed.
• Concern #3: Money. The treatment ranges from expensive to very expensive depending on your insurance. I wish I didn’t need to consider money, but I do. Luckily, Genentech has a drug payment support program (in the U.S.) for people who qualify with private insurance programs (and I did qualify). So it is still expensive, but it is a price worth paying if the drug makes a difference. If you are considering Rituxan, be sure to talk with your Rheumy about this Genentech program. I do not know if Roche has a similar program for MabThera in other countries…I hope so.

Rituxan and Sjogrens: Other Patient’s Experiences

I talked with three people I know who had Rituxan and here is what they said:

1. My first friend is very drug-sensitive and she had a difficult time with the actual infusion. This friend experiences significant Sjogrens fatigue and has not had any energy improvement since the infusion. However,  she does believe there are other positive effects for her. She explained how it felt to receive the infusion, and how she felt the week following. This proved to be a big help to me. There is research that supports her experience on the NLM/ NIH site. She is planning a Rituxan schedule for infusions every four months, if she sees a difference in her Sjogrens disease level. This friend also told me of someone she knows who had a positive experience and a greatly improved life.
2. My second friend had a positive experience with Rituxan. She had a reasonable infusion experience (slight allergy reaction that was handled). For the first four months she did not notice a difference, but then had a significant quality-of-life improvement at the fifth month and is now into her second year. She had the first two infusions, two weeks apart, and has not had additional infusions. I do want to highlight that this is rare! But it certainly is a good story that a best-case scenario can happen to someone I know. Her Rituxan and Sjogrens journey is the one I’m hoping for!
3. The third person I spoke with had, what seems like, an average experience. Her infusions were fine, her labs were improved, she had some improvement with saliva and tears, but not a huge boost in energy. She does the infusions every six months, and is on a Rituxan and Sjogrens maintenance program.

These three people, plus my Rheumy’s clear advice, helped me decide to move forward.

My Rituxan Infusions

I had real anxiety before my first infusion, so I did my best to prepare. In the past, I would just soldier through any experience, but I’ve learned to ask for help (when I really need it). So I asked a dear friend to come with me. Just having her there alleviated a great deal of anxiety. I had no worries about driving, I had someone to talk with and get my mind off of the infusion, and someone to help the next day if I had a negative reaction. Having another person hear the same information from the nurse was very helpful (for discussion and for knowledge should I have a reaction the next day). She was wonderful.

My experience with the 8-hour infusion was about as good as it can be (no side effects or allergic reactions). It is a long infusion process that began with an anti-histamine, followed by a steroid bomb (to help my body accept the medication), and eventually the Rituxan. The nurses were extremely careful and were watching for any reaction.

To make my experience as positive as possible, I brought along a good book, my computer with movies, and a small electric blanket. And my dear friend.

My second infusion took a little less time, but because I knew I tolerated the drug, I did not ask a friend to sit with me for the day. I did ask a friend to drop me off and pick me up at the hospital. The infusions did make me extremely tired afterwards and it would not be safe for me to drive the hour commute.

How I Felt After the Infusions

For eight or nine days following each infusion, I did not feel well at all. Day one and two I was very tired. On the third day, I felt extremely depressed and ill (flu-like symptoms). Luckily, the first friend/patient I talked with had warned me about the steroid crash, so I understood what was happening. For another five days I felt like I had a mild flu, with added diarrhea for a few of those days. On the eighth or ninth day I felt back to my usual normal.  The exact same pattern happened after the second infusion. So now I know how my body accepts the medication and what to expect in the future.

It has been about seven weeks and I can tell a difference! My inflammation has decreased quite a bit (by appearance) and my joint and muscle pain is much less. I have a little bit more energy and I have increased social engagements (which has lightened my mood tremendously). I don’t feel any improvement with tear or saliva production. But I’m hopeful that my Rituxan and Sjogrens journey will continue to improve.

I’ll write an update on how I’m feeling in a couple of months. I hope I’m doing cartwheels and can emphatically state: YES, it is worth it! But it’s a little too soon to tell…

If you are on your own Rituxan and Sjogrens Journey, please do share your experiences and tips for others.

Update August 25, 2017

I have been remiss on keeping you posted on my progress with Rituxan. Here’s the summary:

I did feel better for 3 months! My pain was reduced and my brain fog was non-existent. My mood was lighter and I even had a little more tears. But I did not get the major relief I hoped for.

As a reminder, I did two infusions in December two weeks apart. After being ill for about 10 days afterwards (each time), I started feeling a bit better. By February, I was feeling pretty good…but I did not get close to relapse level.

I had labs drawn end of May and my Rheumatoid Factor had dropped from 640 to 350. That’s a good drop!  My RF had been around 640 for many years and this level of inflammation is a concern (due to other issues arising like my kidney damage). However, I did not receive a big relief, and we did not see a stronger inflammation drop, so I (with my rheumy) decided that the risks and the costs weren’t worth the small benefit.

Cost had a lot to do with it. I have decent insurance coverage and Genentech helped pay for my drug. I recognize that I live in the SF Bay area and we are expensive here, but the final OUT OF POCKET bill that I needed to pay (after insurance and Genentech benefit) was $6,800.  So doing this procedure two times per year with minimum benefit was just too expensive for me. If it had created a relapse-effect, I would have done it!  But not for such a small benefit.

So I am back to waiting for the new pharmaceuticals currently in clinical trial (and specifically for Sjogrens patients). The Rituxan should be just about out of my system, and I may even look into a clinical trial site available near me.

I know others have had fantastic responses to Rituxan, so don’t let my story scare you off if you and your Rheumy are considering this approach. If I choose a clinical trial and I’m accepted, I’ll write about it.