hizentra

[Guest guest]

That's great we are switching from Viva to Hizentra next week.

Janet, mom to Brittany age 19, CVID, Uriticaria & Angioedema, Vitamin D

Def, Secondary Hyperparathyroidism

switched from Gammagard sub-q to Hizentra

sub-q about 4 weeks ago and it has been such a positive experience.

[Guest guest]

our dr. is trying to switch my son from vivaglobin to hizentra right now, but we

are having problems getting it approved.  according to our dr., proline is the

stabilizer for hizentra and is supposed to have fewer side effects and be better

tolerated than the glycine in vivaglobin.  we are hoping to start it next week,

and i'd love to hear from others who have already started using it as well.

 

sarah anne

From: petersonclan5 <petersonclan5@...>

Subject: Hizentra

Date: Friday, May 21, 2010, 2:16 PM

 

Good Morning,

I am not a regular poster, but I read all the time. My children have been

switched from Vivaglobin to Hizentra. Is anyone else on Hizentra that used to be

on Vivaglobin? I was told it was a better subq, but I was just curious for

others opinions on it.

Thank you,

Cheryl

Austin-12

Wesley-10-CVID, severe allergies, asthma

A'dra-8-SAID, asthma, GERD, allergies

[Guest guest]

our dr. is trying to switch my son from vivaglobin to hizentra right now, but we

are having problems getting it approved.  according to our dr., proline is the

stabilizer for hizentra and is supposed to have fewer side effects and be better

tolerated than the glycine in vivaglobin.  we are hoping to start it next week,

and i'd love to hear from others who have already started using it as well.

 

sarah anne

From: petersonclan5 <petersonclan5@...>

Subject: Hizentra

Date: Friday, May 21, 2010, 2:16 PM

 

Good Morning,

I am not a regular poster, but I read all the time. My children have been

switched from Vivaglobin to Hizentra. Is anyone else on Hizentra that used to be

on Vivaglobin? I was told it was a better subq, but I was just curious for

others opinions on it.

Thank you,

Cheryl

Austin-12

Wesley-10-CVID, severe allergies, asthma

A'dra-8-SAID, asthma, GERD, allergies

[Guest guest]

Good morning

We have never been on Viva, but switched from Gammagard sub-q to Hizentra

sub-q about 4 weeks ago and it has been such a positive experience.

He is receiving 10 grams, and it takes about 1 hour 10 minutes to infuse at

25ml over 4 sites. There is minimal site reaction-some faint pinkness

that dissipates within 2-3 hours. There is some itching at the sites during

infusion which is resolved quickly with a cold compress.

Overall I have to say I am very impressed. Our home health nurse who is here

for the infusions is also very impressed and believes the site reactions to

Hizentra are much much better than Viva.

I will get his labs later this week to compare his levels from Gammagard to

Hizentra.

Good luck!

On Fri, May 21, 2010 at 6:16 AM, petersonclan5 <petersonclan5@...>wrote:

>

>

> Good Morning,

> I am not a regular poster, but I read all the time. My children have been

> switched from Vivaglobin to Hizentra. Is anyone else on Hizentra that used

> to be on Vivaglobin? I was told it was a better subq, but I was just curious

> for others opinions on it.

>

> Thank you,

> Cheryl

>

> Austin-12

> Wesley-10-CVID, severe allergies, asthma

> A'dra-8-SAID, asthma, GERD, allergies

>

>

>

[Guest guest]

We started using Hizentra a few months ago...switched from Vivaglobin. It does

not have to be refrigerated, which is nice. My son's dose is in one bottle vs.

four, which is nice...for now anyway.

Slightly less irritating at the site...but we still get a site reaction, but not

for long. Otherwise, very happy so far. Good luck!!!

Kim, Mom to 14 - CVID, SubQ

Hizentra

Happy New Year to everyone!

The immunologist is switching my son from Gamunex IVIG to Hizentra SCIG.

Anybody uses this Hizentra? Thoughts? What did you change from?

Thanks! Sue

[Guest guest]

Thanks Kim, that's encouraging...

Question...my son is pretty skinny, I saw on the Hizentra website video of a

needle insertion thing they referred to as " soft....(something. " ) do you know

what they are referring to? (my son is on the autism spectrum, anything that

would make it go smoother would help!)

  When you say has site reactions, does this mean an itchy or painful

area, or both...also about how long is normal for it to last?

    Thanks again for the info!...Sue

From: Kim Bungay <knmb2@...>

Subject: Re: Hizentra

Date: Sunday, January 2, 2011, 10:54 PM

 

We started using Hizentra a few months ago...switched from Vivaglobin. It

does not have to be refrigerated, which is nice. My son's dose is in one bottle

vs. four, which is nice...for now anyway.

Slightly less irritating at the site...but we still get a site reaction, but not

for long. Otherwise, very happy so far. Good luck!!!

Kim, Mom to 14 - CVID, SubQ

Hizentra

Happy New Year to everyone!

The immunologist is switching my son from Gamunex IVIG to Hizentra SCIG.

Anybody uses this Hizentra? Thoughts? What did you change from?

Thanks! Sue

[Guest guest]

My son is 14 and is Bipolar and has LOTS of anxiety and also has a needle

phobia. ( and sensory stuff) They are probably referring to soft sets which are

needles that have a ring around them for inserting I am not sure it is any less

difficult to use or for him as far as pain. What we did was go to a 6mm needle

as well as my son REFUSED to do it in his thighs or tummy. We use the love

handle area and it works great. He gets a small lump now that is gone in a

couple of hours and HE says it is MUCH less painful than in the other sites.

BARBIE

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Sun, January 2, 2011 9:25:49 PM

Subject: Re: Hizentra

Thanks Kim, that's encouraging...

Question...my son is pretty skinny, I saw on the Hizentra website video of a

needle insertion thing they referred to as " soft....(something. " ) do you know

what they are referring to? (my son is on the autism spectrum, anything that

would make it go smoother would help!)

When you say has site reactions, does this mean an itchy or painful

area, or both...also about how long is normal for it to last?

Thanks again for the info!...Sue

From: Kim Bungay <knmb2@...>

Subject: Re: Hizentra

Date: Sunday, January 2, 2011, 10:54 PM

We started using Hizentra a few months ago...switched from Vivaglobin. It does

not have to be refrigerated, which is nice. My son's dose is in one bottle vs.

four, which is nice...for now anyway.

Slightly less irritating at the site...but we still get a site reaction, but not

for long. Otherwise, very happy so far. Good luck!!!

Kim, Mom to 14 - CVID, SubQ

Hizentra

Happy New Year to everyone!

The immunologist is switching my son from Gamunex IVIG to Hizentra SCIG.

Anybody uses this Hizentra? Thoughts? What did you change from?

Thanks! Sue

[Guest guest]

My son is 14 and is Bipolar and has LOTS of anxiety and also has a needle

phobia. ( and sensory stuff) They are probably referring to soft sets which are

needles that have a ring around them for inserting I am not sure it is any less

difficult to use or for him as far as pain. What we did was go to a 6mm needle

as well as my son REFUSED to do it in his thighs or tummy. We use the love

handle area and it works great. He gets a small lump now that is gone in a

couple of hours and HE says it is MUCH less painful than in the other sites.

BARBIE

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Sun, January 2, 2011 9:25:49 PM

Subject: Re: Hizentra

Thanks Kim, that's encouraging...

Question...my son is pretty skinny, I saw on the Hizentra website video of a

needle insertion thing they referred to as " soft....(something. " ) do you know

what they are referring to? (my son is on the autism spectrum, anything that

would make it go smoother would help!)

When you say has site reactions, does this mean an itchy or painful

area, or both...also about how long is normal for it to last?

Thanks again for the info!...Sue

From: Kim Bungay <knmb2@...>

Subject: Re: Hizentra

Date: Sunday, January 2, 2011, 10:54 PM

We started using Hizentra a few months ago...switched from Vivaglobin. It does

not have to be refrigerated, which is nice. My son's dose is in one bottle vs.

four, which is nice...for now anyway.

Slightly less irritating at the site...but we still get a site reaction, but not

for long. Otherwise, very happy so far. Good luck!!!

Kim, Mom to 14 - CVID, SubQ

Hizentra

Happy New Year to everyone!

The immunologist is switching my son from Gamunex IVIG to Hizentra SCIG.

Anybody uses this Hizentra? Thoughts? What did you change from?

Thanks! Sue

[Guest guest]

So, my son did great with the switch to subQ and Hizentra. No severe headaches

or vomiting. Which is amazing because we did no premeds, although we slowed the

infusion to 2hrs in 2 sites. This is great progress for us.

However...(I feel like my immunologist is going to accuse me of that Munchausen

syndrome). My son has had loose stool since the infusion. Not liquid diarrhea

and not that often, just loose stool 1-2X per day. He has IBD but usually his

bowels are better after an infusion, not worse.

I'm starting to wonder if it's some additive in the Hizentra. My son is

sensitive to any food dyes, preservatives, etc. We just went through a huge

stool testing work-up a couple of weeks ago, so I don't think it's

bacteria/parasites.

I know this came up a little while ago, did anyone find out what was going on

with their kids? Do you think I should try a few more infusions before bringing

this up with the doc?

7yo CVID

[Guest guest]

So glad that he did fine My son developed a GI yeast infection and did

well with two weeks of oral Nystatin. He is prone to yeast, so I

recognized the symptoms within a week of his first dose of Hizentra (and

ds has 4-5 loose stools in a few hours, then nothing until the same

time/same pattern the next day with yeast). This could still fit your

son's pattern, but you might want to wait at least two or more infusions

to see how he does if this does not look like a typical infectious pattern

for your son, or wait until he develops more symptoms. It could just

coincidental. I would also think that if it were exposure to an additive

in the Hizentra, it would not last the whole week until the next infusion,

but have a pattern of worsening immediately afterwards for several days,

then a period of improvement, then repeat Just my two cents. My son

has so many GI symptoms that I always have to wait to see what develops

further I feel like I need to be a detective most of the time, LOL!

Mindy

>

>

> So, my son did great with the switch to subQ and Hizentra. No severe

> headaches or vomiting. Which is amazing because we did no premeds,

> although we slowed the infusion to 2hrs in 2 sites. This is great

> progress for us.

>

> However...(I feel like my immunologist is going to accuse me of that

> Munchausen syndrome). My son has had loose stool since the infusion. Not

> liquid diarrhea and not that often, just loose stool 1-2X per day. He has

> IBD but usually his bowels are better after an infusion, not worse.

>

> I'm starting to wonder if it's some additive in the Hizentra. My son is

> sensitive to any food dyes, preservatives, etc. We just went through a

> huge stool testing work-up a couple of weeks ago, so I don't think it's

> bacteria/parasites.

>

> I know this came up a little while ago, did anyone find out what was going

> on with their kids? Do you think I should try a few more infusions before

> bringing this up with the doc?

>

>

> 7yo CVID

>

>

[Guest guest]

Yeah, I was thinking yeast as a possibility but it does seem to be resolving as

the week goes on. And for us yeast usually needs to be treated. So, it is

getting better the further we get from the infusion. I was so focused on

looking for the headache signs, I didn & #39;t pay attention to the loose stool.

And it & #39;s not horrible, I just hate to see any GI issues since it & #39;s been

a battle.

Today he & #39;s doing great. I guess he was having some fatigue the last few

days too. I know it sounds crazy, but I can usually get a good feeling if his

bowel issues are inflammatory, bacterial or food/additive related. Did I say

" usually " ?!? It & #39;s generally a bigger issue to convince the doctors because

mommy intuition just doesn & #39;t cut it.

I & #39;ll definitely give it a few more infusions and see how things go. Since

we saw no other side effects, it & #39;s worth it to give it a good try. I & #39;m

still amazed that he didn & #39;t get a headache without premeds. I probably

should write a log too so I don & #39;t get confused.

[Guest guest]

I looked up the ingredients, and proline and polysorbate 80 are the other

additives.  He did have Privigen as his first IVIG product but I don't remember

him having diarrhea.  Maybe polysorbate 80?  That seems like a weird thing to

put in an immunoglobin product.  I'm sure my immuno knows a lot about Hizentra

since he was part of the clinical trials.  I'll give it a couple more infusions

and then ask him about it.

Thanks Sue!

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Mon, May 23, 2011 6:39:44 PM

Subject: Re: hizentra

 

Could that be one of the side effects.....what about that proline in it?  

Don't

know, just asking.....glad he did OK otherwise though...sue

From: <stacy171@...>

Subject: hizentra

Date: Monday, May 23, 2011, 4:43 PM

 

So, my son did great with the switch to subQ and Hizentra. No severe headaches

or vomiting. Which is amazing because we did no premeds, although we slowed the

infusion to 2hrs in 2 sites. This is great progress for us.

However...(I feel like my immunologist is going to accuse me of that Munchausen

syndrome). My son has had loose stool since the infusion. Not liquid diarrhea

and not that often, just loose stool 1-2X per day. He has IBD but usually his

bowels are better after an infusion, not worse.

I'm starting to wonder if it's some additive in the Hizentra. My son is

sensitive to any food dyes, preservatives, etc. We just went through a huge

stool testing work-up a couple of weeks ago, so I don't think it's

bacteria/parasites.

I know this came up a little while ago, did anyone find out what was going on

with their kids? Do you think I should try a few more infusions before bringing

this up with the doc?

7yo CVID

[Guest guest]

I looked up the ingredients, and proline and polysorbate 80 are the other

additives.  He did have Privigen as his first IVIG product but I don't remember

him having diarrhea.  Maybe polysorbate 80?  That seems like a weird thing to

put in an immunoglobin product.  I'm sure my immuno knows a lot about Hizentra

since he was part of the clinical trials.  I'll give it a couple more infusions

and then ask him about it.

Thanks Sue!

________________________________

From: Sue Bordelon <sudubo@...>

Sent: Mon, May 23, 2011 6:39:44 PM

Subject: Re: hizentra

 

Could that be one of the side effects.....what about that proline in it?  

Don't

know, just asking.....glad he did OK otherwise though...sue

From: <stacy171@...>

Subject: hizentra

Date: Monday, May 23, 2011, 4:43 PM

 

So, my son did great with the switch to subQ and Hizentra. No severe headaches

or vomiting. Which is amazing because we did no premeds, although we slowed the

infusion to 2hrs in 2 sites. This is great progress for us.

However...(I feel like my immunologist is going to accuse me of that Munchausen

syndrome). My son has had loose stool since the infusion. Not liquid diarrhea

and not that often, just loose stool 1-2X per day. He has IBD but usually his

bowels are better after an infusion, not worse.

I'm starting to wonder if it's some additive in the Hizentra. My son is

sensitive to any food dyes, preservatives, etc. We just went through a huge

stool testing work-up a couple of weeks ago, so I don't think it's

bacteria/parasites.

I know this came up a little while ago, did anyone find out what was going on

with their kids? Do you think I should try a few more infusions before bringing

this up with the doc?

7yo CVID