Anyone have any Hizentra tips

[john]

Hi all,
I think i may be trying Hizentra Sub-cut soon, after years of Flebogamma IVIg usage.
Before I start, does any Hizentra user have any useful tips, information or drawbacks they would like to share with me so I don't go into this radical change completely unprepared?

[mali42]

Hi John
They lent me a cd at my clinic about training to do sub-cut which is a good idea for those starting to do home therapy, will you be training to do this at home or in hospital ?
Sorry I can't help you with sub-cut but hope it all goes well.
Malcolm

[john]

Cheers Malc,
I will ask John my nurse if we have that cd, and see if I can borrow it.
Hope you and Pat are well and enjoying this wonderful weather.... we have my brother and his wife from New Zealand staying with us and they are well impressed by it!!!

[me]

I just did it for first time today and so far id say gas-x. Shortly after finishing treatment I got really gassy and am having some discomfort from it

[terryhalper]

Hi John,

There are 2 things I have heard that have prevented me from making the change from IGIV (I am on Flebogamma for the last 8 years. Other brands of IGIV starting in 1991), to subq gammaglobulin products:

1). It takes 25% more product to achieve the same therapeutic results with subq vs IV infusion. This may not be a concern for those of you in the UK, but for those of us in the U.S.A. who pay part or all of the substantial costs out of pocket, it is definitely a consideration.

2). I believe studies have also shown (I'll try to find and cite them) that one may lose the anti-inflammatory benefits of IGg products when administered subq vs IV routes. Since inflammation is a major cause of cancer, and CVID patients are particularly prone to certain cancers (stomache, thyroid, GI tract), I have decided against this somewhat appealing, subq administration of IGg.

In addition, I understand that subq (sub-cut, as you call it), requires multiple weekly sessions of several hours each, vs my once every 28 day 5 hour regimen with my nurse. I prefer to go with the once a month and done IV and "pretend" I am "normal" the other 27 out of 28 days. Everyone needs to make their own decisions of course in consultation with their physicians to determine what is best for their own unique situation.

I hope this information is helpful in giving you food for thought on your decision.

I generally follow ==> "If it ain't broke, don't fix it".

Terry

[john]

Hi all, thanks for the valuable feedback.
I have decided to give sub cut a go, on a very limited trial basis, just to see if the gastro team think my varices have improved after my next endoscopy. If they haven't then I'll be back on flebogamma like a shot, because
I know that works for me and like Terry I like to forget about my stupid immune system when I can.
You'll definitely hear how things are progressing , NEVER FEAR!

[marksmom]

Hi John - Mark switched from IVIG to subq several years ago with much success. Don't know if you remember us from the old forum - he struggled for many years with recurrent sinus infections. He has done very, very well on hizentra.
It takes him approx. 30 min to infuse 4 grams every week...he gets slight swelling at the sites and it's gone within a few hours. If you get big, raised welts, let your provider know - if the needle size isn't right that can happen. He doesn't report any problems other than sometimes it gets a bit itchy. His veins were kaput from all the IVs and sticks, so this is a less stressful route. From our perspective, steady subQ levels appear to help him achieve overall better health.
Best of luck, I know it can be really stressful when you are switching from tried and true to something different~!

[john]

Hi Rachel,
Course I remember you and Mark, and it's lovely to hear from you again.
I do miss the old forum, we're building up again nicely now, but those early days with all those friends we had .......
I will start my sub cut in a few weeks when we have had a holiday. I will do it until I see the gastrologist, and if they can't see an improvement when then look into my stomach, then I'll go right back on the old IVIg!!
Life continues though, thank goodness. I hope you guys are all well, and I hope to hear from you again soon!!

[catherinenorton]

Hi John,
I am on sub cut hizentra and have had no problems at all with it. Infusion time is shorter than the old subcut stuff i was on as it is more concentrated. The bonus of it is it does not need to be stored in the fridge which is great especially if going on holiday!!
I did a 6 month period of a huge dose for another health condition and was infusing about 200ml per week and still had no problem.
The one tip i would give is to moisturise your skin as much as possible as it makes the needle insertion easier. Also the usual drink lots of fluids. I use a 4 site needle set to spread the volume out which makes it more comfortable. What sites are you going to use? I use tummy and legs.
So lovely to be back in touch....feel like i have come home!! xx

[catherinenorton]

Hi Rachel :-) xx

[john]

Hi Catherine,
Well today I did my second infusion with Hizentra, and once again it all went smoothly.
The nurses kept saying I had picked it up quickly, but I think they forget I have see so many people start out on sub-cut it certainly isn't a mystery!!
The moisturiser tip is good, I guess E45 is as good as any, and for once I am happy that my tummy is not as flat as I always wished it was!!!
I have used 4 sites, and didn't even get left with red marks, so I can't complain! Just have to hope that my levels are maintained and that sub-cut helps my oesophagal vein problem.
I'm very glad to see you here on our forum Catherine, and I hope you are feeling much better than you did in those good old bad old days when we first "met"!!

[catherinenorton]

Hi John,
Thats great news its going well. Whats your oesopagal vein problem? How have you been keeping health wise? And how is that lovely wife of yours?
Yes those good old bad days!!! I am ok thanks....Brief update for you....I divorced my husband after his continuing 'support' of my illness made him go out and get another woman pregnant!!!
I was on my own for a few years with Holly and then met a lovely man Brett who i married 2 years ago. He is soooo supportive and i couldnt ask for more. Holly adores him and i have 2 step sons too who are fab. Unfortunately Holly's dad still is causing trouble and we have had lengthy court battles but he will never change.
We had a big surprise and had a little boy 9 months ago called William....he is gorgeous.
Health wise has been eventful. I developed dermatomyositis and ended up being ill health retired. Tried lots of treatments ,high dose ivig and subcut,hydroxychloriquine and now on high dose steroids. Lots of lumbar punctures and muscle biopsys.
Now they think i have a pituatory tumor,just waiting for scan to confirm or not but something is malfunctioning.
So eventful but much easier with a supportive hubby!!

I'm sure i could have made newspaper headlines being a pregnant pensioner!
Also had an article published about me in BMJ as i achieved high dose ig levels via subcut rather than ivig....fame at last
xxx

[john]

Wow Catherine, what a life - you should write a book!!
I'm so happy that you're happy now, as you so rightly say, dealing with all the cr*p we deal with is easier when you feel supported.
And a new baby, blimey, that's amazing!!
I hope you have a good outcome from your upcoming scan, better to know what the problem is than to live in ignorance.
My vein problem is basically high internal blood pressure, due to liver complications. The pressure causes veins in my oesophagus and gut to swell and burst, causing internal bleeding, which is dangerous!! So we're hitting it with SCIg, beta-blockers, 3 monthly endoscopies with banding and glue injection!! My life eh??
Hope this hot weather isn't wearing you out too, we have a 6 month old nephew called Noah, and he is living in just his nappy these days!!!