Mb2 - Benefits of Infusions?

[mb2]

I have known about my very low levels of IgA, IgG (+other) in my blood for years, it caused problems when I was young. I didn't have to see doctors for years in my late teens and twenties but since reporting minor problems in my early thirties doctors and specialists have been pointing me towards injection of plasma. I haven't had any real problems, I don't personally think I'm much iller than most people (my specialist thinks I am) so could anyone currently on these infusions let me know of benefits of this treatment (or bad things if there are any)? Many thanks

[john]

Hiya,
I have virtually non-existant levels of any of the Igs, and so I report every three weeks at a clinic to Infuse gamma-globulin, which is derived from human plasma, but is certainly not whole plasma. It's a very well controlled, filtered and purified product, and in my case it is slowly pumped into a vein in my arm.
In my case this has been going on now for 20 odd years, and without it and the care I get from the specialist team who prescribe and administer it I am quite sure I would have died!
This aspect of my treatment minimises the infections I pick up by providing donated antibodies to the more common bacteria out there, but if I pick up something more unusual, as I have at the moment, then I need to take a large helping of antibiotics!
The gamma globulin is a very pricey commodity, and rest assured you will not be offered it unless you will benefit from it.
Hope this has answered a few of your points, let us know if you have any more!

[s162216]

Hi mb2,

The Intravenous Immunoglobulin G (IVIG) and Subcutaneous Immunoglobulin G (SCIG/Sub-Cut/SubQ) infusions are very beneficial - I'm similar to you as I didn't feel that I had that many infections compared to other 'normal' people when I got my surprise CVID diagnosis (I only found out as the results of a ceoliac disease test which works on antibody presence kept coming back inconclusive and after measuring my antibody levels found that I was deficient in all three major types) but when I told my new immunologist how many infections I had in the past 3 years (about 2 or 3 chest, about the same upper respiratory and a few skin) she was concerned that I had had that many (only a couple in that time is normal apparently) and told me that it would be in my best interests to have the IVIG (they don't just give it out for anyone, you have to seriously be in need of it for it to be offered)

The problem is that the more infections you have, the more likely that damage such as bronchitis will develop and additionally with a lot of antibody deficient people their childhood vaccinations don't work as they can't produce an immune response so you can be susceptible to those diseases as well. The IVIG/SCIG infusions bring your immunity up closer to how it should normally be and because the antibodies in the infusion are from plasma donations, it will also protect you against the diseases which are normally vaccinated against. The actual infusions are nothing very major, IVIG is generally given every 3 weeks either at home or at a hospital and takes a couple of hours normally; SCIG is given every week and is usually done at home, although you have to have it more often the plasma Ig levels tend to remain more constant than with IVIG. Usually you will be given a choice as to what direction you want to go in regarding the infusions.

There can sometimes be some bad points like some people having reactions to the IVIG/SCIG product such as headaches, tiredness, feeling cold or possibly more serious ones, but at first you will have it in a supervised hospital environment where if something goes wrong you can be quickly helped and in future the product switched to a different one to see if your better (a lot of people are fine with the first type they have, others have to try a few before they get the one which 'suits them') on it. For some people it can be difficult going in every 3 weeks, but home therapy where you do it yourself at home is becoming quite common and is very helpful. Overall though the infusions are very beneficial and can help to prevent future problems as your much less likely to develop infections.

If you have any other questions or concerns then feel free to ask them, a lot of us here have IVIG/SCIG infusions and will be happy to help.

Sam

[willo]

Hi mb2

I agree with the above. If it is being offered you need it. Must say I was shocked when I was diagnosed 2 years ago and I joint the forum and asked for the same type of advice. For me the benefits of infusion outweigh the potential disadvantages. You will find the members very supportive and most will say listen to the professionals.

Stay well

[mali42]

Hello
Your history sounds very similar to mine and from about the age of 30 my immune system slowly went from whatever it was to zero. i didn't get diagnosed until i was 44 after many repeated infections. if i was diagnosed earlier i would not have any lung damage and far less infections. you might feel ok now but think about how you will be in ten years time.

The benefits for me is being able to breath through my nose and not always get colds from people in the same room which always gave me a chest and sinus infection.
Malcolm

[mb2]

Thanks all for your replies.

[john]

You're very welcome!
Come back any time if you need more help/advice.
Nice to meet you

[elained]

I read this avidly.

I was diagnosed in 2011, and have been sick with one thing or another for about three weeks out of every six for longer than that.

My immunologist recommends SCIG (or IVIG).

I think SCIG would be best for me.

I'm MUCH older and this entire thing has come as a shock to me.

I'm 71 (in March) and I guess that means that 1) I won't have to do this for a LONG time, even if it's the rest of my life, and 2) since I AM older the illnesses are more dangerous to my life expectancy.

I really appreciated the comment that my doctor would NOT have recommended this if it weren't indicated. My doctor is associated with Duke University and seems very sharp.

I think I will meet with her colleague who specializes in CVID.

My husband did research into transplantation immunology and will help me with the SCIG process.

This just takes getting used it, as I'[m sure you an all appreciate.

Any thoughts, suggestions, encouragement, or your experiences willb e vital to me.

Elaine

[john]

Hi Elaine,
I'm glad you found this useful.
Two things.... Firstly 71 is NOT that old (!!), I regularly meet up with a fellow patient who is 92 and still travelling the world, sewing, gardening and generally looking after herself, and secondly you will soon be feeling so much better that you will not even be thinking about life-expectancy issues!!
It's great you are under an immunologist and that you have a supportive husband, you have the gold standard !!!

[mb2]

Hi all,

Been on the sub cutaneous infusions for a couple of months now. I'm glad to say the treatment is alot easier than I was worried it would be. Had annoying cold to start with but that went with some stronger antibiotics. Apart from that I've been infection free, which is a big improvement on the hay fever I usually suffer. Cheers

[john]

There you go, and it just gets better, specially in the winter when we used to have one infection after the other!
I'm very pleased you have reported back, and so positively - all helps encourage the unsure newbies when they read a post like this!!

[elained]

Indeed it does, John.

If I get approved, I'll be doing Subq AKA Sub cut.

Just have to wait, again. Most of life is waiting. Good thing it's so interesting here in the waiting room!

Hugs

Elaine