Unrecordable Immunoglobulins - any advice?

[Ruhi9]

Hi everyone,

It’s been a while since I last posted, but 2015 was such a hellish year - 6 months of BR starting in January 2015, during which I had 2 hospitalisations with neutropenic sepsis and continuous chest infections lasting throughout the remainder of the year. It kind of gets a person down after a while, and I wanted to try and forget it all.

Anyway, past couple of months no chest infections, though 10 days of the worst sickness and diarrhoea which really knocked the stuffing out of me. Feeling much better now thankfully.

I had my 4-monthly blood test 2 weeks ago, and then had a phone consultation with the consultant - I've asked that he just phones to discuss results as the thought of going for oncology appointments in hospital is enough to push me over the edge!

All the blood counts are looking good and within normal parameters, including my neutrophils, but because of my frequent chest infections he had decided to check my immunoglobulins as well.

There are three different readings: IGG; IGA and IGM, and apparently I was off the lower end of the scale for all of them and my IGA was unrecordable, hence the higher risk and susceptibility to infections. He suggested I go into hospital for a monthly intravenous infusion of immunoglobulins, but just the thought of going back there made me feel sick and panicky, so I said thanks but no thanks!

So my question is does anyone know if there’s anything I can do naturally to improve my immunoglobulins? Are there any foods, exercises, supplements... etc? I eat a mainly organic vegetarian diet and love walking!

Thanks for any suggestions.

Ruhi

[asktinu]

I have no advice but I wanted to wish you good luck, and tell you that reading your experiences with BR were very helpful to me. I only wish you hadn't had such a hard time.

[Cllcanada Top Poster CURE Hero]

Goodness you have had a rough go...

Immunoglobulin A, G and M get supressed by CLL and then chemoimmunotherapies reduce them further. Unfortunately there is no way to get the A and M levels up.

So, patients are infused on a regular basis with IgG, which is a blood product made from the pooled blood of several thousand people... This will increase you IgG levels.

Thankfully, the IgG will do some of the job of the other two ... IgA and IgM, so while those levels will never return the IgG has part of it covered...

If hospitals visits are a problem, then you might consider weekly treatments with subcutaneous IgG, which can be done at home, using a small pump and needles under the skin of the stomach or thigh... it is called SCIG

SCIG is quite new, but CLL patients report very good results, and the home aspect appeals to many... the proceedure takes about an hour...

Other than that, nothing much you can do to improve your immunoglobulin levels unfortunately. There was a study that showed some increase on patients using a lenalidomide treatment, since it is an immunomodulator, but it wouldn't be used like this unless it was used to treat CLL in a clinical trial...

Here is one brand of SCIG ...

hyqvia.com/about/what-is-hy...

~chris

[Ruhi9 in reply to Cllcanada]

Fantastic advice Chris, thank you. I’ve written a reply to everyone below.

[AussieNeil Partner Administrator]

I hope you can find a way to have immunoglobulin transfusions, because it can make a world of difference to your health and hence overall quality of life. Consider it a transfusion of other people's immunity. Chris has given you excellent advice and it's a pity your specialist took so long to investigate your immunoglobulin levels.

Your immunoglobulin levels may slowly recover over time as your B- lymphocytes recover after treatment, but because your treatment has been so successful and you accordingly have so very few B-Lymphocytes left to mature into plasma cells, (which are our immunoglobulin factories), you will remain susceptible to bad infections without help from blood donors.

Neil

[Ruhi9 in reply to AussieNeil]

Huge thanks Neil - it gives me hope that the levels will improve as my B-lymphocytes recover. I’ve written a longer reply below.

[helenvb]

Please consider the ivig treatment. I could give you so much quality of life back as it has for my husband who had 3 years of chest infections, stomach upsets etc. He has had 1 cold only so far this year, only requiring 7 days antibiotics to clear up a secondary cough, like everyone else did. A world of difference.

I appreciate your reluctance to have monthly hospital visits. The prolonged infection period had left my husband exhausted and depressed. The thought of going to hospital every month and to one further away than his usual destination gave him prolonged anxiety. He received help to deal with this from an oncology phycologist. Now the treatment is just part of his routine and only takes up 3 hours max. The more you have it the more quickly it can be administered. He's a big guy so needs 3.5 packs.

Ask about the home regime, that's not an option here yet, but takes even less time.

Be prepared to feel a little tired after treatment just for the rest of the afternoon, if you choose to go for it.

Helen

[Ruhi9 in reply to helenvb]

Thanks for the advice Helen - seeking help from an oncology psychologist would be helpful as I dread anything at all to do with the hospital! I’ve written a longer reply below.

[wmay13241]

My wife is in an NIH CAR-T clinical trial. NIH monitors her IgG monthly. When it drops below 400 she gets an IVIG infusion. She did not have any side effects and the IgG reading rose from 325 to 800.

[Ruhi9]

Thank you all for your excellent advice. I think a huge part of my reluctance to have IV treatment is because my veins are so lousy - it took 8 or 9 attempts to cannulate me when I had my first cycle of BR which was very traumatic, and so a PICC line was inserted before the second cycle. Obviously it’s been removed now, and so I’m very worried about them having to find a vein that doesn’t collapse!

I will certainly ask about the home regime though and see whether that can be offered, because if I understand correctly it won’t involve any cannulating.

Except for my two hospitalisations, I managed to avoid antibiotics and recover under my own steam, and I’ve currently got bags of energy and can really breathe! I guess the misery of being unwell has been pushed to the back of my mind and is not enough to impel me towards having the treatment yet.

The consultant said if I got ill again and decided to go for the treatment to just get in touch, and so I think I’ll leave it at that for now, and try hard not to get too close to sick people!

[AussieNeil Partner Administrator in reply to Ruhi9]

IVIG is very expensive - remember it takes several thousand blood donations for one IVIG transfusion, so it is not prescribed unless you really, really need it. That's why you need both low immunoglobulin G AND a history of infections to qualify.

Don't discount your risk of death from infections either - after all, it's how CLL usually kills us. If our immunity drops too low, we can become sick from pathogens we harbour all the time but without consequence when we are well.

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Here is a good chart comparison of IVIG products. I read recently that some brands use over 10,000 blood samples... not all donated apparently, guess in some parts of the world there are payments... in fact it is a very competitive growth industry in emerging nations...

primaryimmune.org/wp-conten...

In Canada we are struggling with the donate or pay for your plasma issue

cbc.ca/news/health/paid-pla...

Medscape has a good multipage piece on IVIG... its not just the immunoglobulin, but cytokines and all kinds of good things

emedicine.medscape.com/arti...

[Ruhi9 in reply to Cllcanada]

I just received a copy of the hospital letter this afternoon that was sent to my doctor:

"We discussed the immunoglobulin levels today in particular that all three types of immunoglobulin are low. This may predispose Mrs------ to infections therefore if she does find she is getting recurrent infections she must let us know and we can consider starting intravenous immunoglobulin. I have explained that I do not think this is justified at present.”

Thanks to all your kind responses I now understand far more about the importance of IV infusions, and my consultant’s letter makes it clear that I am a candidate for the infusions should they ever become a future necessity.

Here’s to hoping they won’t, but I will certainly err on the side of caution should I get sick again.

[Cllcanada Top Poster CURE Hero in reply to Ruhi9]

Why not discuss having a more perminent chest port installed, they can stay in for a number of years if needed... I know many CLLers that have these for IVIG infusions, some who have never been treated yet...

uwmedicine.org/health-libra...

[manzelka in reply to Cllcanada]

My husband has had Ivig infusions, and it has only taken the morning, from 8.30 am till 1 pm then we go home. This is a very expensive treatment, you only get them if you absolutely must have them. I hope you health improves very soon.