Posted ten days ago about my recent problems with repeated infections, shingles X3 in 18 months, numerous chest infections, UTIs and now campylobacter ( gastroenteritis ). Well, am now on my second course of antibiotics for the campylobacter and still experiencing dreadful symptoms.
Decided to see my rheumatologist privately to discuss my problems and review my treatment. Did lots of research on rituximab and infections so went along well informed. He listened sympathetically to my tale of woe. The last 18 months have been miserable with all these problems plus a right hip replacement last June. He agreed with my assessment of the situation and assured me he would check my immunoglobulin levels on his return to the NHS hospital.
Prescribed antivirals and antibiotics for me to use in case of further infections. Discussed a strategy for me to discontinue my daily steroids as he feels they are contributing to my immune status. Will take 35 weeks to come off them as have been on them for 40 years. He has also recommended vaccinations given to people who are immunosuppressed including HiB and the shingles vaccine. Only 64 so not eligible at the moment for routine vaccination. Also discussed Rituximab dosage. Had read research that indicated half dosage of the drug is as effective as the usual 1 g. He agreed to try this strategy for my next infusions.
Received his letter today which is copied to my GP and Rheumatology Nurse. Letter states that my infections are associated with Rituximab and that I am hypogammaglobulinaemic, i.e.. clinically immunosuppressed after he has reviewed my blood results. These bloods were done April when I had my first of my Rituximab infusions (8th. cycle). So now more blood tests and then immunoglobulin treatment, 3 infusions every 3 weeks then repeat bloods. Has anyone else on this site had this treatment?
Am now feeling rather disillusioned with the medical profession.
I have questions that need answering now about why this condition was not picked up earlier. It is 4 months since the bloods were done. Who is responsible for checking our results?Have been to the GP for these repeated infections so why was there no suspicions about an underlying cause. It seems I had to diagnose myself and resort to seeing my Specialist privately to find the answers.
Sorry for such a long post but wanted to encourage everyone to monitor their own condition carefully. I will make sure that in future I ask for all my blood results and check them out myself. For your information the consultation cost only £100.00 and I feel it was money well spent.
Thank you for reading this post and do take care of yourselves.
Best wishes Pam