subcutaneous or IVIG???

[Deleted]

Hi everyone,
My husband and my Immunologist has suggested that I should think about having subcutaneous injections at home instead of having the ivig done at the treatment centre (from what I'm told, I'm the only one there who has CVID!!).

I'm certainly thinking about it but I don't know what it involves, can anyone tell me , how its done, and how often and how it works and any side effects and how it effects day to day life? I am seeing my immunologist in 4 months time.

At the moment I'm on 400ml (2 bottles) once every 3 weeks, so i presume i would need 130ml a week? Would this go through one needle or several and how long would it take, do people find that they could do other things whilst there having it done?

Any advise would be appreciated

[emsy]

Hi
I m on SCIG weekly. I have never had IVIG so cannot compare. If you decide to go sc they will have you going into the centre weekly for at least 6 weeks or until you are totally confident infusing yourself. For me, the nurse did my first one for me and the following 5 weeks she supervised while I did my own. They teach you how to draw up the product and infuse yourself. The dose is weight related, at least at first. I'm not sure if it increases after a while or not, I would guess it may do if you are not achieving adequate levels but so far my dose has not changed. I weigh 9 stone and am on 30ml Hizentra but other sc products are out there.
You draw the product into a large syringe through a masive needle that looks scary until you realise that this is NOT the needle that goes into your skin!
what goes into you skin is a set of 4 small butterfly needles: 2 go into my belly and the other 2 into my thighs (some people do them all in their belly). the product is pushed through the needle set into your skin using a freedom 60 pump (I think this is standard in the UK. The Americans on the fb group may use a multitude of fancy gadgets!).
For me, the actual infusion takes about 45mins as I have a relatively low dose. From your previous posts I think you are a similar size to me, if not smaller so I wouldn't think it would take any longer for you to infuse.
I think side effects can vary and you will be told about all possibilities before you commit to the infusions. personally, I get a bit of a rash at infusion site which is helped with an antihistamine. I also get a bit bloated and tired but I infuse before bed nowadays to reduce this. You can walk around during the infusion, you get a carry case to put the pump in, but I tend to use it as an excuse to just chill out for a bit.

Hope this helps

emma

[mali42]

Hi Katy
Did they give you the option of learning ivig at home as well as subcut ?

I did a 6 weeks training course with my partner (pat) and now do ivig at home once every 3 weeks which I prefer because I don't have to think about infusions very often.

I was given a sub-cut trainig dvd which looked easy enough but I have no practical advice on that side but I'm sure people with experience on sub-cut will chip in soon.


Malcolm

[mims]

ifs its any help, i have been doing sc for a year now. Out of the two options, i much prefer sc. I trained for 6 weeks at Kings College and got "signed off" and I set aside monday morning. I find it very easy, I infuse 120mg of subcuvia and put the syringe drivers in my pockets and just get on and do jobs around the house. The only stipulation my specialist nurse said was to do no gardening - cross contamination!! I live approx. 2hours from London and it was a real pain going up every 3 weeks. this gives me freedom and I have accepted its for the rest of my life. Its worth a try. good luck.

[willo]

Hi all,

I have recently switched from subcutaneous to ivig. Initially I had three training sessions, spread over three weeks, for the subcutaneous method. I used the Freedom 60 pump to infuse 70mls per week. This was delivered via four tiny needles, two in my thighs and two in my abdomen. There was always a little swelling at the needle sites where the fluid waited to be absorbed but that had gone by the next day.

Although the pump is portable it is too big to put in a pocket. The overall time taken to complete the procedure including waiting for the Emla, numbing, cream to work was about three and a half to four hours.

Having the medication in the home and doing the infusion weekly did have an impact on me and my family mainly because it was in your face all the time. However, you can always have a break and have an iv infusion.

The important thing is that I have felt worse, for longer, between IV infusions and of course that impacts on me and my family. I am going to have a few more IV infusions before I make a final decsion to go back to subcutaneous.

It is all about finding what is best for you and your family.
You have nothing to lose by trying subcut, if you don't get on with it you can go back to iv.

Stay well

[prickles]

Hi

My daughter has been on subcut for the last 4 years. She has just increased her dose to 60mls gammanorm weekly. She started off with 2 very tiny needles in her tummy which she preferred to use freezie spray than emla, at the moment she is trying out the butterfly needles in her thighs using emla to numb them but due to the tubing being quite short she is not so mobile so may go back to her tummy.

We set aside Sundays to do the infusion as we don't normally go out anywhere and it takes a couple of hours to go thru.

For us doing it at home is much easier - she doesn't miss school (when she is in!) and it doesn't cause the hospital any problems finding her a side room (she is MRSA positive) so suits us.

Each person is an individual and what may suit one does not suit another, but give it a go as you can always go back to IV.

Sue

[cvidman]

I've tried both but prefer IVIG overall as I only have to think about it every 3 weeks rather than having to infuse once a week.

[john]

hi,
i broadly agree that which way we chose to go with our infusions should be entirely up to us, except in the rare cases of one method being less effective than the other, in which case we still have choices.
myself - i go for ivig, which i have done for 18 odd years (and always the same product - boring? moi??).
because i can NEVER see myself putting in my own canula, i prefer to go to the clinic and let the nurses do it for me, and because i have great veins, and very rarely have any sort of reactions, it's all over in a couple of hours, every three weeks. i can then forgrt about treatment till my calender says i am due at the clinic!
i know lots of people who self-canulate, or get their partners to canulate them at home and are entirely happy with that, so even if subcut doesn't hit the spot there is still the ivig at home option, if you don't want to /can't get to the clinic.
obviously home therapy with sub-cut gives more freedom to move around when infusing, whereas ivig at home will tie you down for a couple of hours, but needs no preparation (drawing up / site numbing etc), and it's all over for another 2-3 weeks.
i have spoken to guys who admit to gardening when sc infusing, and even one who likes to go to the pub whilst sc infusing!!! don't think i'd recommend that though!!
whatever you chose, don't be pressured into a decision you're not happy with!
take care - john