Am seeing my rheumatologist privately next week for a chat as I am becoming increasingly concerned about the number of infections I am experiencing whilst on rituximab therapy. I have been on rituximab now for ten years and it has proved to be a wonderful treatment for my RD of 43 years. It has improved my quality of life tremendously and reduced the pain and further damage to my joints.
This said I am now becoming worried about the frequency of infections. The past year has been very difficult. June15 UTI requiring antibiotics, R Hip replacement July 15 (successful), Oct 15 another UTI(attended GP and told her I had a UTI) but she admitted me to Addenbrooke's with suspected appendicitis. Discharged 3 days later with antibiotics for UTI! November - February problems with left knee which cleared with steroid injections. March shingles again for second time, treated with antivirals. March - April rituximab infusions. May severe respiratory tract infection which required 2 courses of antibiotics.
July went on holiday to Portugal and developed gastroenteritis. Saw doc in Portugal who wouldn't prescribe antibiotics. On my return went to GP when I developed shingles for 3rd time and put on antivirals. Told him about gastroenteritis. Took in sample following day. Had to visit GP again 2 days later as I was very ill with symptoms of gastroenteritis. I was refused antibiotics until results of sample were known. I told doc I thought it was campylobacter as I had this about five years ago. Two days later results returned confirming campylobacter and started on antibiotics! Just to emphasise this wasn't just a tummy upset, I have lost 6 kgs in 21/2 weeks and felt absolutely wretched with that and the shingles.
This isn't just a tale of woe, I am interested to know if others are experiencing the same problems. Do you ever get asked at your rheumatology appts if you have had had any infections? Are the experts aware of the prevalence of so called minor infections? If any of you a have had shingles or campylobacter would you describe them as minor infections?
Think it would be useful if our GPs were more aware of the implications for patients who are immunosuppressed who develop viral or bacterial infections and perhaps listen more closely when we tell them what we know is wrong with us. Don't get me wrong, don't want to put the medical profession down. I am an ex health care professional, was a nurse and graduate psychologist & feel competent to evaluate my own health.
Would appreciate any response about your experience of rituximab or other similar drugs and infection.
Best wishes Pam