Follow up on Rituximab- induced Hypogammaglobulaemia

[Scorer]

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.

Pam

[Multijo]

Pam. Thank you for sharing. I will add this to my list of what I monitor.

Jo

[helixhelix]

Those are two really good points, so thanks for posting. IgG levels are now on my list.

It would be great to feel that the GP did keep an overview of how one was doing - but those days are long gone I think. And I haven't seen the same GP more than once since last century, and have never seen the person who is listed in my file as "my" GP! So it's a good doctor's visit if they remember my name, let alone anything else.

I take the view that my health is a joint responsibility between me & the NHS, and I need to do as much as I can to look after myself too. Yes it would be lovely to have more comprehensive care, but as long as they respond properly when I tell them about a problem then that's the most important thing.

Fingers crossed that the infusions do the trick for you, and get back into shape quickly.

[cathie]

I agree with you. My gps are usually happy to print out blood test results so with a bit of googling I can work out what is going up or down and if that's important. Drs here are on the ball about bloods but after a hiatus a few years ago I did learn that I need to watch things.