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Hypogammaglobulinemia

Hypogammaglobulinemia.

It’s a mouthful to say

It’s basically another word for antibodies.
This is the root cause of the last years ill health, my never ending pneumonia, my tiredness and all the other stuff that’s wrong with me. This is a side affect of my rituximab maintenance treatment so the consultant has stopped any more infusions.

I being urgently put onto immunoglobulin replacement therapy

What is the process for having immunoglobulin replacement therapy?

Most people who need immunoglobulin replacement therapy have the procedure as an outpatient. You do not usually have to stay in hospital overnight unless you are already an inpatient.

Immunoglobulins are usually given as an intravenous infusion (by a drip into a vein). This is called ‘intravenous immunoglobulin therapy’ (IVIG). The length of time it takes to have the infusion depends on how much immunoglobulin you need and other factors like your weight. It usually takes a few hours to have the infusion. The first treatment might be given slowly to reduce the risk of side effects.

Some people have immunoglobulin replacement therapy as an injection under the skin. This is called ‘subcutaneous immunoglobulin therapy’ (SCIG). The needle is attached to a pump so the immunoglobulins can flow slowly into your body. It can take up to 90 minutes to give immunoglobulins by subcutaneous injection. SCIG can be given in hospital or it may be possible for you to give the injections yourself at home after training by your medical team. Some people have more frequent injections of small doses of immunoglobulins given by syringe at home after training. These injections are given over around 2 minutes, usually around 5 times per week.

There we go, so for the next year it looks like I will be having this done.

It could take several years for the damage done by the rituximab to be reversed but at least we are moving ion the right direction now.

The other thing is that I going to be, probably for the rest of my life, on preventer antibiotics. which I will be taking 3 times a week.

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