Re: QUESTION? Vivaglobin...

[Guest guest]

Like new issues? has been on Viva for 4 years and in the last month has

developed some new issues. Curious!

From: jnjjones@...

Date: Mon, 15 Nov 2010 13:59:15 -0600

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Like new issues? has been on Viva for 4 years and in the last month has

developed some new issues. Curious!

From: jnjjones@...

Date: Mon, 15 Nov 2010 13:59:15 -0600

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Like new issues? has been on Viva for 4 years and in the last month has

developed some new issues. Curious!

From: jnjjones@...

Date: Mon, 15 Nov 2010 13:59:15 -0600

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Emma has had some severe neck pain for three weeks, they have tested

everything under the sun. She can't play sports

And is so tired and can't stay up for all days without pain meds. They said

leaning to spasmodic torticollis but

Are still doing some other testing. Just had an MRI with neurologist...so

we will see. It came on, out of no where

And no accident or injury so it is confusing to me how her neck can't move

sideways.

I am looking for any info I can find.

Thanks,

Jill

QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Viva is still on the market. It is being phased out but is still available.

Mom of 4, 3 with mito (2 on ivig)

On Mon, Nov 15, 2010 at 3:24 PM, Barbara Jimenez <mother5590@...>wrote:

>

>

> Viva is no longer on the market and YES there have been some neuro problems

> with

> Viva. Some of the other problems have had better results. We are using

> Gammagard

> SD SubQ for about 5 years.

>

> BARBIE

>

> ________________________________

> From: jones <jnjjones@... <jnjjones%40macomb.com>>

> <%40>

> Sent: Mon, November 15, 2010 11:59:15 AM

> Subject: QUESTION? Vivaglobin...

>

> Has anyone been told about stopping Viva for neurological problems?

>

> Thanks for insight.

>

> Jill , CVID mom

>

> To Emma, CVID

>

>

[Guest guest]

I think others can speak better of the problems. We have never been on

Vivaglobin

BARBIE

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Mon, November 15, 2010 12:24:10 PM

Subject: Re: QUESTION? Vivaglobin...

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

I think others can speak better of the problems. We have never been on

Vivaglobin

BARBIE

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Mon, November 15, 2010 12:24:10 PM

Subject: Re: QUESTION? Vivaglobin...

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

I think others can speak better of the problems. We have never been on

Vivaglobin

BARBIE

________________________________

From: Barbara Jimenez <mother5590@...>

Sent: Mon, November 15, 2010 12:24:10 PM

Subject: Re: QUESTION? Vivaglobin...

Viva is no longer on the market and YES there have been some neuro problems with

Viva. Some of the other problems have had better results. We are using Gammagard

SD SubQ for about 5 years.

BARBIE

________________________________

From: jones <jnjjones@...>

Sent: Mon, November 15, 2010 11:59:15 AM

Subject: QUESTION? Vivaglobin...

Has anyone been told about stopping Viva for neurological problems?

Thanks for insight.

Jill , CVID mom

To Emma, CVID

[Guest guest]

Sorry I was not aware except that people are being switched off of it.

BARBIE

________________________________

From: Hobbs <jhobbsfamily6@...>

Sent: Mon, November 15, 2010 12:27:36 PM

Subject: Re: QUESTION? Vivaglobin...

Viva is still on the market. It is being phased out but is still available.

Mom of 4, 3 with mito (2 on ivig)

On Mon, Nov 15, 2010 at 3:24 PM, Barbara Jimenez <mother5590@...>wrote:

>

>

> Viva is no longer on the market and YES there have been some neuro problems

> with

> Viva. Some of the other problems have had better results. We are using

> Gammagard

> SD SubQ for about 5 years.

>

> BARBIE

>

> ________________________________

> From: jones <jnjjones@... <jnjjones%40macomb.com>>

> <%40>

> Sent: Mon, November 15, 2010 11:59:15 AM

> Subject: QUESTION? Vivaglobin...

>

> Has anyone been told about stopping Viva for neurological problems?

>

> Thanks for insight.

>

> Jill , CVID mom

>

> To Emma, CVID

>

>

[Guest guest]

I have only heard that Vivaglobin was being taken off and the Hizrenta coming in

here. We are still using the Vivaglobin and have not been told by our pharmacy

that it is not going to be available. Nobody has said one word about it.

Take care,

---- Barbara Jimenez <mother5590@...> wrote:

> Sorry I was not aware except that people are being switched off of it.

>

> BARBIE

>

>

>

>

> ________________________________

> From: Hobbs <jhobbsfamily6@...>

>

> Sent: Mon, November 15, 2010 12:27:36 PM

> Subject: Re: QUESTION? Vivaglobin...

>

> Viva is still on the market. It is being phased out but is still available.

>

>

> Mom of 4, 3 with mito (2 on ivig)

>

>

> On Mon, Nov 15, 2010 at 3:24 PM, Barbara Jimenez <mother5590@...>wrote:

>

> >

> >

> > Viva is no longer on the market and YES there have been some neuro problems

> > with

> > Viva. Some of the other problems have had better results. We are using

> > Gammagard

> > SD SubQ for about 5 years.

> >

> > BARBIE

> >

> > ________________________________

> > From: jones <jnjjones@... <jnjjones%40macomb.com>>

> > <%40>

> > Sent: Mon, November 15, 2010 11:59:15 AM

> > Subject: QUESTION? Vivaglobin...

> >

> > Has anyone been told about stopping Viva for neurological problems?

> >

> > Thanks for insight.

> >

> > Jill , CVID mom

> >

> > To Emma, CVID

> >

> >

[Guest guest]

I have only heard that Vivaglobin was being taken off and the Hizrenta coming in

here. We are still using the Vivaglobin and have not been told by our pharmacy

that it is not going to be available. Nobody has said one word about it.

Take care,

---- Barbara Jimenez <mother5590@...> wrote:

> Sorry I was not aware except that people are being switched off of it.

>

> BARBIE

>

>

>

>

> ________________________________

> From: Hobbs <jhobbsfamily6@...>

>

> Sent: Mon, November 15, 2010 12:27:36 PM

> Subject: Re: QUESTION? Vivaglobin...

>

> Viva is still on the market. It is being phased out but is still available.

>

>

> Mom of 4, 3 with mito (2 on ivig)

>

>

> On Mon, Nov 15, 2010 at 3:24 PM, Barbara Jimenez <mother5590@...>wrote:

>

> >

> >

> > Viva is no longer on the market and YES there have been some neuro problems

> > with

> > Viva. Some of the other problems have had better results. We are using

> > Gammagard

> > SD SubQ for about 5 years.

> >

> > BARBIE

> >

> > ________________________________

> > From: jones <jnjjones@... <jnjjones%40macomb.com>>

> > <%40>

> > Sent: Mon, November 15, 2010 11:59:15 AM

> > Subject: QUESTION? Vivaglobin...

> >

> > Has anyone been told about stopping Viva for neurological problems?

> >

> > Thanks for insight.

> >

> > Jill , CVID mom

> >

> > To Emma, CVID

> >

> >

[Guest guest]

Can I ask what kind of neuro issues are being associated with Viva? My boys

have been on it for 3 years, and have had significant progression in

neuromuscular issues over the past 2 years.

, mom to 2 DSs with specific antibody deficiency.

>

> Viva is no longer on the market and YES there have been some neuro problems

with

> Viva. Some of the other problems have had better results. We are using

Gammagard

> SD SubQ for about 5 years.

>

> BARBIE

>

>

>

>

> ________________________________

> From: jones <jnjjones@...>

>

> Sent: Mon, November 15, 2010 11:59:15 AM

> Subject: QUESTION? Vivaglobin...

>

>

> Has anyone been told about stopping Viva for neurological problems?

>

> Thanks for insight.

>

> Jill , CVID mom

>

> To Emma, CVID

>

>

[Guest guest]

So many...dystonia, chorea, eye-movement irregularities, gait disturbance,

speech regression, tics...was awful.  There is a great deal of discussion on

the

board in the archives.  The lady who runs the board does not like us to talk

about the vivaglobin side-effects on the board.

Could you do me a favor....could you call Behring and ask if any neuro effects

have been reported...call the nurse line.  Also discussion on the board that

they have denied knowing about side effects.  Several of us have been in

contact

with the FDA.

Curious to see if Behring is acknowledging the side-effects yet.

Thanks,

Kris

________________________________

From: the4quintons <4quintons@...>

Sent: Tue, November 16, 2010 8:37:43 AM

Subject: Re: QUESTION? Vivaglobin...

 

Can I ask what kind of neuro issues are being associated with Viva? My boys have

been on it for 3 years, and have had significant progression in neuromuscular

issues over the past 2 years.

, mom to 2 DSs with specific antibody deficiency.

>

> Viva is no longer on the market and YES there have been some neuro problems

>with

>

> Viva. Some of the other problems have had better results. We are using

>Gammagard

>

> SD SubQ for about 5 years.

>

> BARBIE

>

>

>

>

> ________________________________

> From: jones <jnjjones@...>

>

> Sent: Mon, November 15, 2010 11:59:15 AM

> Subject: QUESTION? Vivaglobin...

>

>

> Has anyone been told about stopping Viva for neurological problems?

>

> Thanks for insight.

>

> Jill , CVID mom

>

> To Emma, CVID

>

>

[Guest guest]

I thought the side effects were why they discontinued it but then it didn't make

sense becasue they replaced it with an even more concentrated product (read more

caustic to the tissue).

________________________________

From: a Vajda <kcvpcv@...>

Sent: Tue, November 16, 2010 8:13:23 AM

Subject: Re: Re: QUESTION? Vivaglobin...

So many...dystonia, chorea, eye-movement irregularities, gait disturbance,

speech regression, tics...was awful. There is a great deal of discussion on the

board in the archives. The lady who runs the board does not like us to talk

about the vivaglobin side-effects on the board.

Could you do me a favor....could you call Behring and ask if any neuro effects

have been reported...call the nurse line. Also discussion on the board that

they have denied knowing about side effects. Several of us have been in contact

with the FDA.

Curious to see if Behring is acknowledging the side-effects yet.

Thanks,

Kris

________________________________

From: the4quintons <4quintons@...>

Sent: Tue, November 16, 2010 8:37:43 AM

Subject: Re: QUESTION? Vivaglobin...

Can I ask what kind of neuro issues are being associated with Viva? My boys have

been on it for 3 years, and have had significant progression in neuromuscular

issues over the past 2 years.

, mom to 2 DSs with specific antibody deficiency.

>

> Viva is no longer on the market and YES there have been some neuro problems

>with

>

> Viva. Some of the other problems have had better results. We are using

>Gammagard

>

> SD SubQ for about 5 years.

>

> BARBIE

>

>

>

>

> ________________________________

> From: jones <jnjjones@...>

>

> Sent: Mon, November 15, 2010 11:59:15 AM

> Subject: QUESTION? Vivaglobin...

>

>

> Has anyone been told about stopping Viva for neurological problems?

>

> Thanks for insight.

>

> Jill , CVID mom

>

> To Emma, CVID

>

>