Any advice on Hypogammaglobulinaemia?

[Mikey47]

I had a hospital consultation with my haematologist today and on the printout of my blood test I notice that I have Hypogammaglobulinaemia. My Haematologist never even mentioned it. We only spoke about my Immunoglobulins which are all low.

Any advice here?

[Cllcanada Top Poster CURE Hero]

Hypogammaglobulinaemia is the term used to describe low immunoglobulins...low Igs... My dvice let your doctor worry about it and don't read printouts of blood tests...

~chris

[bantamsheffield in reply to Cllcanada]

A good point Cllcanada. After living with this annoying condition for for almost 12 years and undergoing various treatments, with varying success rates. Currently half way through CamPath. I have never got involved with the minutia of blood tests etc, apart from my Consultant telling me when things are up or down etc. I cannot effect these things and prefer to focus on the things I can do i.e. keeping well, avoiding the poorly people whenever possible.As my granny used to say "Look after the pennies and the pounds will look after themselves"

I appreciate that my philosophy does not suit all. Good luck all with your daily battles.

[Mikey47]

Thanks Chris. My IgM is especially low <0.18 (normal range 0.5 - 2.0)

[Cllcanada Top Poster CURE Hero]

IgM is the first responder like the Swat Team, good thing is that IgG can do part of the job.

en.wikipedia.org/wiki/Antibody

[Mikey47]

Very interesting, thanks.

[bkoffman CLL CURE Hero]

Many of us CLLers get by just fine for many many years with very low levels of immunoglobulins.

[Mikey47]

Thanks Brian, my haematologist obviously wasn't bothered about it. I guess we just 'get on with it'.

[kaymack]

I'm one with very low levels of immunoglobulins since diagnosis 4 years ago. I get by fine also. I'm careful with hand-washing, I avoid touching my eyes and nose and I avoid being too close to people with obvious respiratory infections. I get out and about a lot, but during the last flu season, I did avoid very crowded public places.

[Cllcanada Top Poster CURE Hero]

Low immunoglobulin levels can be augment to some extent with a blood product called IVIG or intravenous immunoglobulin G. It is a ,'pooled' blood product from 3000 or so donors, and is full of the 4 types of immunoglobulin G...lots of antibodies targeted at bacteria primarily.

Regrettably, we can't augment IgM or the mucosal secreted IgA, but IgG does a bit of the work of the other two...

There is a new subcutaneous Ig version, SCIG, but it hasn't been used widely in CLL.

The IVIG is very expensive and different insurers have different criteria for its use. It is an option in some cases for CLL patients having continual bacterial infections, and IgG levels.

[alipali]

My IgG levels have also been low since diagnosis in February 2002. FCR therapy followed from August 2009 to February 2010 resulting in a complete remission. However, two years on I had developed “worsening panhypogammaglobulinaemia” and in March 2012 my total IgG was documented at 0.7g/l. I had received IVIG from round three of FCR onwards, and continued for a total of 17 consecutive months. This monthly treatment ceased in February 2011, and IgG levels then drifted down over the next 12 months to 0.7g/l during which time I had a couple of chest infections. The Immunology Department, via my CLL Consultants, suggested they might be able to help. Since June 2012 I have been self-administering SCIG on a weekly basis and last month my IgG was 10.9g/l.

[Mikey47 in reply to alipali]

Interesting I didn't know about the self-administered SCIG. I will look it up on the CLL Support.org site.

Thanks

[aussiejo in reply to alipali]

SCIG ? what is it please ?

[Mikey47 in reply to aussiejo]

It's SubCutaneous Ig if you read through the above you will see.

[MsLockYourPosts Passed Volunteer]

Mikey - The fact that your doctor is paying attention to your Ig levels is a big plus. A lot of patients have to ask to have theirs tested because of problems with infections. If your doctor is already on top of this, I'm sure he will let you know if he feels you need IVIG. There are considerations for the self administered IVIG as well as for the IV variety.

Pat

[Mick491]

Following several bouts of pneumonia and other bacterial infections which hospitalised me I asked my GP to do the IgG test and results take 28 days to come back. Waiting to hear results and this information has been useful to me too, thanks.

Mick

[Damms in reply to Mick491]

Wow 28 days!!

I get my blood drawn in the morning and receive info from the doc in the afternoon on my levels (also immunoglobines)

[AussieNeil Partner Administrator in reply to Mick491]

28 days has well and truly passed Mick. I presume your results were OK? Further to Damms comment below, I agree 28 days is a rather excessive wait, though Damms gets better service than I do in Australia. My blood counts and blood biochemistry results are available the next day, but some tests like immunoglobulin levels take longer because, as I understand it, the testing centre batches them to get enough to process more economically.

Update: I've posted about my IVIG experiences here: healthunlocked.com/cllsuppo...

and my SubCutaneous IgG (SubQ) experiences here: healthunlocked.com/cllsuppo...

[sunshine35]

I also have low IGG levels. After bouts of pneumonia, bronchitis etc, I receive monthly IVIG treatments for the last 7 yrs. Stay away from sick people, wash hands whenever in contact with elevator buttons, railings etc. Having family and friends that are cautious at exposing me to illnesses is also helpful. Talk to your

oncologist about treatment. My Doctor started them when I was 1st diagnosed with CLL and hypogammaglobulinenemia.