My husband had his appointment with his new consultant on Friday and is still in remission, but felt he should see an Immunologist as he had a number of infections lasting 4months. Today my husband has received a letter from him stating that he has done a referral in view he is pan-hypoglobulinemic.
We have no idea what this means but in the copy of the letter says that he would benefit from intravenous immunoglobulins. and azithromycin 3times weekly as prophylaxis. He is 3yrs 1month post-FCR.
jenny uk
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no idea what the medical term used for the referral means ? I am sure someone far more technical, like JM Jackie will be able to answer that. But rest assured that monthly IVIG ( I have been on for two years for sinus infections ) will be a great help with your husbands frequent infections, as will the azithromycin. Something I also have been prescribed.
Even though the malignancy may have been tackled with treatment, we can be left with an immune deficiency for which we require intravenous infusions to try and halt the frequent infections. This explains;
A reduction in the circulating levels of all the major classes of immunoglobulin. is characterized by profound decreases in all classes of immunoglobulin. Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi.
Many of us (including me), are on monthly IVIG (intravenous immunoglobulin therapy) to supplement this deficiency because depleted antibody/immunoglobulins are quite normal for many of us CLL’ers. This is because CLL interferes with the way healthy B-lymphocytes mature into plasma cells that make them. CLL cells disrupt this process by interfering with the way healthy B and T-lymphocytes work together to create hypermutated B-lymphocytes that make antibodies for a specific bug. (This is why vaccinations don't work that well for us.)
The immune system rests on two major pillars: the innate, general defence and the adaptive, specialised defence. Both systems work closely together and take on different tasks.
IVIG is usually given in the haematology day unit by inserting a cannula and administering the immunoglobulins (which are the collective plasma from the blood taken from potentially thousands of donors). That’s why it’s so expensive and only given if the IgG drops below 4 and/or there’s frequent infections. It’s a highly effective treatment to supplement the deficient acquired immune system.
The Consultant obviously also feels your husband requires prophylactic antibiotics (meaning ongoing protective antibiotics) in view of his frequent infections.
thank you, Jackie, we were very hesitant when we had a letter informing Mick that he would be seeing this new guy, turns out he was very much on the ball .
In the uk one of the official criteria for IVIG is that you’ve tried an antibiotic like azithromycin first. I understand some centres don’t strictly apply all the criteria but if there is going to be a wait it may be worth exploring with your GP and/or haematologist whether they feel you should start the azithromycin before seeing the immunologist. For some people this approach can in itself prevent infections though for many it doesn’t. And certainly if the experience of several on this group is anything to go by the antibiotic may turn out to not be needed once the IVIG dose has been sorted out.
IVIG by the way is simply IV meaning intravenous and iG meaning a type of globulin in this case Immunoglobulin or antibodies. In other words it replaces antibodies. This can cause even some doctors some confusion as people receiving IVIG will often test positive for antibodies to diseases they haven’t ever faced (eg Hep B for example). This doesn’t mean they have been infected with the disease just that thanks to the kindness of strangers they have received the antibodies to that illness among many others.
You can think of IVIG as like a passive form of immunisation. Ie your body doesn’t have to do any work it is just given antibodies through the drip.
Just to further complicate things these days sometimes IVIG is not given through a drip into a vein but instead sub cutaneously (under the skin like a injection often is). Then it is called SCIG (with the SC standing for sub cutaneous).
They you have it.
Doctors have this whole language of complicated sounding words but they are actually built up on relatively simple building blocks that when you learn them mean you can figure out what they are saying. They do this for simplicity and brevity. Much easier to use one word then to say “low levels of all types of the non-albumin proteins found in their blood”
I’ve been on azithromycin for a few months and yet have still had infections so it’s one less hoop to jump through when IVIG comes round for me which it looks like it will be soon.
Just to break down the medical word it isn’t quite as daunting when you know how these words are build up.
“Pan” just means universal or covering all types as in a pantheist who worships everything as god or a pansexual who is attracted to anyone regardless of their gender or sexual identity.
“Hypo” means bellow or low like hypotension (low blood pressure the opposite of hypertension) hypoglycaemia (low blood sugar), hypothermia (low blood temperature)
“Globulin” is a globe like type of protein which has several sub types one if which is an “immunoglobulin” which comes from the immune system and is simply the posh word for antibodies.
Finally emic is relating to a blood condition and makes it a descriptive word eg anaemic. If you change the last letter to an a you get a noun like anaemia it in this cause hypoglonulinaemia.
For more information on how medical words are often built with a prefix main part and suffix see this article
Thank you, Adrian will make an appointment with the GP.
Jenny uk
Jenny,
See the e-address below for a relatively recent article covering everything you ever wanted to know about hypogammaglobulinemia & immunoglobulin infusions. In the U.S. approximately 20% to 25% of us have hypogammaglobulinemia at the time we are diagnosed with CLL, most of the rest of us get it later. I had the same treatment recommended by your new consultant and worked very well for me. If you have questions or concerns do not hesitate to ask for more info.
I started IVIG infusions 17 years ago. They have been a Godsend for me. I had dealt with neverending sinus infections since childhood. You might ask whether the prophylactic antibiotic is short term while your husband's frequency and dose are adjusted to his needs. IVIG allowed me to stop popping antibiotics. For years my infusions were monthly. I am now able to go to every other month without dealing with infections (most of the time - a few have cropped up over the years).
Not at all Jenny. I had to start IVIG before my CLL treatment started. In fact I had them the same day. The condition can deplete what is like a secondary immune system (they actually run in tandem and are interdependent).
Having the infusions sometimes feels like being hooked into a community of healthy donors who have been kind enough to share their strong immune systems with me. It’s actually a godsend! 😊 It can be a bit time consuming and takes a couple of hours hooked up but I just view it as little drops of expensive nectar that I’m grateful to receive.
It simply means you lack immunoglobulins (fancy word for antibodies) and they want to replace them. Immunoglobulins are needed because they fight infection. There are five types IgG IgA IgM IgE IgD. That’s why he is getting infections easily. He should do well with the medicine.,
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