Hello

[alittlebean]

Hello all!

I was pointed in the direction of this site by the immunology specialist nurse I am now seeing. I am starting sub cut immunologlobulin treatment tomorrow. Eeeek!

I'm a ball of emotions at the moment.....excitement at the prospect that this will hopefully improve my current health situation but a lot of anxiety about it too- especially needling myself!

I've been under an immunologist for a few years now due to repeated infections-bacterial and fungal mainly but viral too. I have low IgG and this has been dropping recently but strangely my vaccination titres have been ok. This is the second time I've gone through the vaccines as my levels had dropped again when they rechecked them. I'm also on prophylactic antibiotics everyday- have been for about the last two years. I've also been told I have low mannose binding lectin (?).

I'm currently battling my third chest infection and fourth fungal infection in six weeks so feeling pretty grotty and run down at the moment. Magic Juice would be highly appreciated!

My first few infusions are going to be at the hospital so i can learn the ropes then I'll be doing it myself at home after that hopefully. I think its Gammanorm they're putting me on, once a week. I had a big delivery from the nice people at Bupa last week! I'm told this is a trial (probably 6months) to see if it improves the frequency and the severity of the infections I'm getting.

How soon did you find you noticed a difference after starting immunoglobulin? Did you have any side effects from the infusions? Will having an infection at the moment make things any different/worse? Do i need to chill out after the infusion? Anything else I should be aware of?

Any tips will be gratefully received.

Thank you,
Louise

[liz2mac]

Hi Louise, Welcome!
My daughter has recently been diagnosed with manan binding ligand deficiency too, as well as some specific antibody deficiencies. What does this mean? Well I'm struggling to understand it myself. Specific antibody problems are relatively easy to explain. This means, as I understand it, one of two things. Firstly you may not be able to make antibodies to specific bacteria. So, if someone was looking at your bloods to see if you produced antibodies generally you would, but if they then vaccinate you and se if you produce antibodies to that specific "invader" you don't. The other thing is that you may produce antibodies to that particular "invader" but they just don't work. These are known as non functional antibodies. This is why its SO important to see an Immunologist specialising in PID. Only these specialists will be able to diagnose this kind of problem, which, as you've found, can cause you very real health problems. Ok Manan Binding Ligand Deficiency. This is where I'm struggling. It seem s to me that this is a problem of the immune system to do with somthing called the Complement System. My understanding is that this deficiency prevents the complement system from working properly, which in turn prevents the immune system from effectively defeating bacteria. This is one of the issues which is only know coming to light and that we need to get easy to understand patient literature written about. I do hope that you feel better soon. Its rotten feeling ill all the time, as we all know, but hopefully the action your immunologist is taking on your behalf will give you a whole new lease of life!
Liz

[barbfrombc]

Hi Louise and welcome to the group. It is perfectly understandable that you would be a little nervous about treatment. I sure was at the beginning! I hope that things went well for you. This is the first step towards what will hopefully be much better health for you. I am on ivig so the side effects, processes etc. are quite different, but the results are similar. I have been on ivig for about 6 years and my quality of life is hugely different than it was in the early days. I found that treatment wasn't an instant cure though. It took several months before I really started to notice a difference. I hope the response time is much less for you. In either case, I have no doubt that the treatments will help you greatly. All the best.

Barb

[mali42]

Hi Louise
welcome and its good that your immo nurse pointed you in our direction,

It took me ages to get my head round the whole situation with infusions etc and was nervous as hell before my one but 8 years on they are just a part of my life now,

My side effects were a headache 2 days after ivig lasting for about 4 days slowly going but now I rarely get one and are easily sorted with paracetamol,

I would not make any plans after your infusion just make it a day to relax until you are more used to them, I am washed out on my ivig day so just use it as a lazy time, I do ivig and not subcut so not sure about the side effects with that.

I hope it went well on your first treatment and you begin to feel the benefits soon.

Malcolm

[liziJ]

Hi Louise,

Really nice to "meet" you, and it's great to hear about immunology nurses directing you our way! So how was your first subcutaneous infusion? I've been having subcut infusions for 12 years now and can safely reassure you that you get used to them pretty quickly! I still remember my first infusion very vividly though, and that strange feeling of the immunoglobulin pumping under my skin!

You asked how long it took to feel any benefit - most of us would say a good few months at least, for me it was much longer. However I was extremely ill when I first started infusing whereas it sounds like you're at a better starting point, so hopefully it won't be too long before you start seeing a difference.

Anyway do let us know about your first infusion and how it all went.

Lizi x

[alittlebean]

Hi everyone, thank you for the welcome
I've just come back from my second sub cut infusion session: did the whole thing myself today! Whoop! It went really well thank you. It's great to hear you've all be 'doing it' for a while and are seeing the benefits!

I'm really desperate to be infection free for longer than two weeks!

I did find after the first session I felt very nauseous, and had a really bad headache and couldn't get warm at all! Climbed into my Pj's and hid under my duvet with a hot water bottle. Felt really washed out for a couple of days. The sites weren't too bad, just swollen and red for a couple of days and lumpy for about three days. Best of all, seem to have got over the fear of needling myself! They don't give the numbing cream

I'm finding the tiredness the hardest thing to cope with at the moment. I'm climbing into bed by half 9 at the latest. Please tell me that gets better?

Anyhow thanks again. Hope you're all well

Louise- magic juiced up!

[liz2mac]

Hi Louise,
I think you'll see from some of our posts that there is a group of us who (nobody knows why) go on to develope really bad fatigue, however, please be re-assured, most of us feel beyond describably better after we've been stabilised on replacement therapy. Its a long, long time since I was in that position and I can STILL remember that awaking back to life. Hang on in there, your life is just about to start getting very much better.
Liz

[s162216]

Hi,

With IVIG/SCIG a lot of us having it go either one way or the other shortly after having it, some like me go very tired and just go to sleep whilst others feel like their so full of energy that they have to do something with it like clean the house or something. Overall though the general tiredness does improve (or at least it did with me) although don't expect it to be instant, it takes a few months. I have a subcutaneous insulin cannula constantly in for use with my insulin pump, which I replace every 2 days and don't use any numbing cream for, your body will adapt and the pain you may get during the insertion will reduce until eventually its hardly even noticeable.

Sam