Jo Olsen has secondary immunodeficiency due to taking rituximab, a medication used to treat rheumatoid arthritis. She kindly shares her experience with us and has some helpful advice for others living with immunodeficiency. Jo is a member of the Pro Ability Network at her local hospital, where she supports disabled staff who have invisible and visible illnesses.
My hypogammaglobulinemia diagnosis was surprising
I’ve had rheumatoid arthritis for over 20 years, collagenous colitis (a condition that affects the large intestine), high blood pressure, coeliac disease, osteopenia (low bone density) and recurrent iron deficiency. I was surprised that I had hypogammaglobulinemia. My diagnosis was quick, so I was never left in the dark, but I’m aware that many people wait years for a diagnosis.
Rituximab is used to treat rheumatoid arthritis, and the medication is linked to the development of hypogammaglobulinemia.
I had recurrent chest infections and pneumonia in 2016
I was admitted to hospital for two days, then I was sent home to recover. I met a thoracic consultant, who diagnosed bronchiectasis and referred me to an immunology consultant in Southampton because of my blood results. My immunology consultant initially thought a few infusions of immunoglobulin (IG) might do the trick and bring my bloods back to normal, but over time we realised I will need infusions for the rest of my life.
Privigen (a form of intravenous immunoglobulin (IVIG)) didn’t work for me and I had an anaphylactic reaction. Doctors put me on another type of IVIG, but I had a similar reaction to that too. Then, they decided to switch me to a subcutaneous immunoglobulin (SCIG) product, which I could administer at home after some initial training at the hospital. I haven’t looked back. I inject myself with Subgam three times a week.
Fatigue has been the main issue
When I was first diagnosed, I made myself a fatigue chart. A scale of 1 equated to being able to walk downstairs and sit on the sofa all day. A scale of 2 meant I had the energy to perform tasks such as mowing the lawn of my small front garden. I had to have a year off sick from work to build myself up. Recently, I had a setback, which entailed two visits to A&E. But I am recovering from my chest infection now, and need to increase my IgG levels to restore my energy.
My hopes for the future
Once I build up my energy levels, I am going to volunteer as a radio presenter at the hospital where I work. I also plan to go cycling with my eight-year-old son.
Here are some thoughts for people who might be in a similar situation to me.
- Our bodies are unique to us, and what works for one person might not work for another. Learn to listen to your body.
- Continue to infuse the amount of SCIG advised by your health professional, otherwise your IG levels will go down and you will struggle to fight off a cold. I am learning the hard way! My immunology specialist nurse told me that if I stop taking Subgam for one week, then it will set my IgG levels back by 12 weeks! I stopped my Subgam infusion for one week after receiving each Covid vaccination. I then injected two vials instead of three vials a week to gradually reintroduce Subgam to my system, just in case I had any reaction to the Pfizer Covid vaccination, but this action caused my IgG levels to drop.
- SCIG offers greater flexibility than IVIG because you are in control and can do the infusions at a time that suits you.
- Join a hypogammaglobulinemia social media support group.
- People don’t understand invisible illnesses, and hypogammaglobulinemia is an invisible illness
- ‘Spoons’ check out the website butyoudontlooksick.com. Pace yourself.
- You will be in denial most probably and carry on as normal and then wonder why you are exhausted a few days later.
- Sometimes you have to choose between doing the housework and meeting up with friends. You won’t be able to do it all. I would do the latter!
- Asking for help is one of the hardest things, but do it.
My top tips
- Rituximab is connected with hypogammaglobulinemia. Be aware of the link if you have rheumatoid arthritis and take rituximab.
- If you have bronchiectasis, then exercise your lungs by walking each day.
- Be kind to yourself.
- Hydrate while infusing your IG. I also take an antihistamine, but you should check with your immunology team to find out if that is appropriate for you.
Posted June 2021