Have posted recently about my latest diagnosis of Rituximab-induced Hypogammagobulaemia. Now require immunoglobulin infusions x 3 three weeks apart to treat immunosuppression caused by Rituximab, metho and steroids. Had private appointment to talk to my Rheumatologist about repeated infections including Shingles X 3 in 18 months, numerous chest infections and UTIs and latterly a severe bout of Campylobacter.
Consultant rang me today to ask me to go for a blood test tomorrow to check levels of IgG. Apparently level was 4 in Jan 2016 when last measured. Told me he wants a level of 6+. Have looked back in my medical records, got a copy when we moved 3 years ago, and found that as far back as 2012 my IgG was only 5.4. So have been below desired level for at least 4 years. No record of IgG level in my notes prior to this though have been on Rituximab since 2008, metho for 30 years and prednisolone for 40 years.
Just want to emphasise the importance of monitoring one's own condition as in my experience we can't rely on the docs to do this. Immunosuppression is a complicated issue and not well understood by many GPs. The repeated infections reduce the quality of life and can be avoided. If you are on immunosuppressants. Ask about your IgG level and keep a record of any infections and make sure you report them to your Rheumatologist. If we don't report them then they remain in ignorance of the prevalence.
Don't regret taking any of the drugs that have induced this condition as they have kept me going for a long time and improved my quality of life. However, am disappointed in the care I have received under the NHS in this respect. Surely someone should be responsible for monitoring the IgG levels. In future I will take responsibility. Have always done this for regular blood tests I have due to metho therapy.
Best wishes all.