So far so good with Sub cut

[john]

After all those years of having IVIg at the clinic every three weeks, I have now completed 6 infusions using subcut and Hizentra.
My first reaction is that the amount I need, 90mls per week, takes much longer to prepare and deliver to 4 sites than I thought it would, something a bit over two and a half hours, making it three times longer than IVIg of the equivalent dose.
Also I think one needs a bit of fat available for the needles, and I only have fat on my tum, so I'm a bit concerned when the instructions say that I shouldn't use the same site over and over!!
The next thing to say is that the kit delivery to my home was pretty in-precise and meant staying in for most of the day waiting.
The good stuff, and there is some good news here is that it doesn't hurt sticking in the needles, or when the stuff is pumping in, and my first blood test showed that my trough levels had risen to over eleven for the first time in a few years.
So will I stick with it? That all depends on whether the gastro guys find that subcut is improving my portal blood pressure due to keeping my blood volume down, and that will be the topic of conversation when I see the gastro consultant on Monday.
Wish me luck!!

[elained]

WOW, just when I'm waiting for take off with my first IgG Sub cut.......you're out in front on this, too.

Keep us posted.

Glad it's going well.

Hugs, Elaine

[mali42]

Hi John
At least you know what both procedures are like and can decide which is better for you health wise, I thought the same as you after watching the video about sub-cut taking longer to set up, it might have to be an option for the future, after 9 years of inserting the needle in my favorite vein part of it always fails so we have moved it up a bit.

Good luck with the gastro guys on monday i will be keep my fingers crossed for you.

Malcolm

[marksmom]

Hi John -
Mark will only infuse his stomach and I was worried about that, too. I talked to the pharmacist and she said if you are rotate sites around your stomach, that is okay. We use the belly button like a clock and rotate top, middle, bottom. He only gets 2 sites, so not sure if that helps so much with four...

Glad to hear your trough level is up! silver lining.
Best wishes,
Rachel mom to Mark

[glowing]

I do the same as Rachel, John, as I only use my tummy. You are supposed to be able to use the top of your thighs but I don't like the idea of that.
Really good that your trough levels are so high. That's just what happened to me and I've been really well since I started subcut. Hope the same goes for you. Good luck Monday.
Glo

[supersub70]

Hi John,
I've been doing sub-cut for just over two years now. You will find it gets quicker and dare I say you take a few "short cuts" in the set up once you get a bit of experience. Regarding the sites, if you are a bit lean like me it is harder to find some nice fatty tissue but a couple of things help me prepare. Firstly drop an antihistamine tablet about an hour before, this helps reduce reaction at the sites. Secondly I find a nice warm bath or shower just before helps to open up the skin to allow a smoother insertion of the needles. If you can nip enough fatty skin on the inside of your thighs it seems to be a decent site to go for. Avoid the more boney outside thigh area (as I found out to my cost). Otherwise, as already posted you can rotate/alternate around the belly button area.
Good luck, the freedom that home therapy sub-cut offers is definitely worth persevering with in my opinion.

[john]

Wow, thanks for all the support and advice people!
I have a bruise on my tum from one of the needles, which I showed to the nurse today, and she said it was OK!
They also said if I infuse at the clinic this week they will help me locate alternative sites, which should be embarrassing but interesting!
However I'm def going to try the warm bath/antihistamine tip next week here at home!
About my Gastro visit... I will be having an ultrasound scan, a gastroscopy and blood tests to look at my thyroid, and he says I should stay on the higher dose of beta-blocker as it seems to be keeping the bleeding at bay. No matter that the darned stuff is knocking me for six!!!
Anyway, c'est la vie!! Thanks again to all of you

[s162216]

I usually replace my insulin subcutaneous cannula after having a shower as I find that it helps to loosen up the subcutaneous fat like said above (of which I have pretty much none!) as well as assisting in removal of the old cannula (not really relevant to you but the adhesive is so damn strong!) One thing to be careful of though is to not overdo it in the bath/shower as that can lead to blood vessels coming closer to the surface with more chance of them being hit when you put it in (probably not as important in the stomach as there are few major blood vessels there but definitely important if you put it in your legs or [in my case] beneath your back [the only place where I have enough subcutaneous fat!])

Sam

[elained]

Listen to you guys with no sub cut fat.

My heart bleeds for you!

ha!

[john]

I'm infusing as I write this!!! What a brave soldier he is, I hear you all cry!!
Today instead of four in a line below my navel, I have one over each hip on the abdomen, and two in the middle, all above the navel.
first syringe half in, one and a half to go. The telly is on and it takes my mind of the strange, unnatural things going on under my T-shirt!!!

[mali42]

Hi John
Your braver that me I get Pat to put the needle in and look the other way :-)

The only problem I can see is you will to get addicted to all the daytime soaps,

Seriously I'm glad is all going well for you

Malcolm