Hizentra and Scar Tissue

[rwchurch]

Does anyone find they have scar tissue build-up from Hizentra infusions?

[john]

Hello and welcome to the forum.
I've been using Hizentra for exactly 3 months, having infused Flebogamma IV for almost 20 years.
The sites I use for subcut are on my belly, one week four in a line horizontally below my navel, and the alternate week four in a line above my navel.
I have very skinny legs so I have to use my abdomen!
I usually get away without any problems, except that my tummy is now permanently mottled, but three times I have had really bad bruising, great big black and purple blotches where one of the needles went in.
I showed my nurse this and she said it was OK, and that it was fairly common.
When I did IVIg my arm became scarred, so I'm sort of expecting to see scarring on my tummy, but not yet.
Other patients tell me about itching, which I don't get, and one lady swears by massaging the sites on her legs and tummy to reduce swelling and itching.
Hope this helps, keep in touch!!

[rwchurch]

Hi John,

Finally changed to Hizentra I see. Quite a change, but I believe subcut tends to even out, no highs and lows.
I was on IVIG since 1992 and switched to subcut in 2008. I cannot infuse in my tummy because of previous operations and scar tissue.
Since I've been on subcut I've noticed swelling and a build-up in my thighs, arms and hips where I alternate sites weekly. The "lumps" or scar tissue has become a problem so I began a monthly regime with a remedial massage therapist to see if that would help. So far I see a noticeable difference, but wonder if I will have to stay on this path or there is a better way. I see my immunologist early November and plan to discuss with him at that time. I question whether others have the same outcome with subcut.
When on IVIG I had NO soreness, swelling or bruising, so why didn't I stay on IVIG? Subcut is more even and convenient.
Thank you for your response.
Raye

[john]

Hi Raye,
I only changed to see if the different treatment would help another medical problem I have, otherwise I was completely happy with IVIg!
The problem, we think, for me was dumping a large volume of liquid suddenly into my blood, and whether this was increasing the likelihood of bleeding internally from varicose veins in my oesophagus and duodenum.
This change, coupled too three monthly endoscopy and banding off of obvious veins, and beta blockers, seems to be working so I'll probably stick with Hizentra!
Where do you get seen Raye? I am a patient at the Royal London in Whitechapel... Smashing team of docs and nurses, and I like it so much I volunteer there one day a week!!

[rwchurch]

Hi John,
Maybe I'll see you when I come for my appointment Wednesday, 6th November. I'm also seen at Whitechapel and find the care is extremely good. The nurses are great and Dr.Buckland is superior.
Dr. Buckland has allowed me to go off subcut for the summer, vaccinated and retested when I come to London. This has allowed me
a rest from the infusions and the scar tissue... build-up is very acute. We will discuss in more detail at my visit. Summer 1997
in the States, the docs tried this to see if my immune system would bounce back, but had to continue IVIG. This time I just wanted a rest from the jabs and soreness, plus I'm not sure about the dosage given in the States since UK docs have lowered
it considerably. In the US I was diagnosed with Mild Von Willenbrands disease and when checked at the Royal London last year, when
an inpatient, the hematology department disputed my diagnosis. Weird!! since my 2 open heart surgeries meant NO valve replacement due to blood thinners and the valve had to be patched all due to bleeding disorder!
So it goes on... one thing after another, but that's what makes life interesting. I wouldn't have met all the interesting people and
learned so much if life were easy!
It's amazing how much we "cure" one problem and another crops up. Hope the Hizentra does it for you. I find I'm a lot more even with the subcut, no more high after IVIG and tired dragging towards the time of the next infusion.
In 2 weeks I will be in London and maybe see you at Whitechapel. Last appointment I had, I saw a lady that attended the symposium, but I don't remember her name. John Dempster will, but he's on top of everything...one of the many good people at Whitechapel.

[john]

Hi Raye,
I remember you now!
I don't know for certain that I'll be in the clinic on the 6th, but if I am we'll have a long chat and a cuppa!
I had my routine endoscopy yesterday, at the Royal London, and I have to say that everyone who works in that place is brilliant, so friendly and always cheery,
Luckily my varices problem is looking stable so this man will be staying with Hizentra,
See you soon I hhoe,