Re: Hizentra reactions in DD with no IgA......

[Guest guest]

The fatigue and fevers are a part of PID so don't be surprised if they continue.

The anxiety and depression are also associated withchronic health conditions.

You might consider finding a child psychologist or therapist.

Ursula

Mom to Macey (16, dx 1997)

On Sep 11, 2011, at 9:55 AM, " plant4birds " <gardenlass@...> wrote:

> Friends,

>

> This is Betty in Maine. I have multiple sclerosis and total IgA antibody

deficiency. We also have Ian (18) Asperger's syndrome and total IgA deficiency

and Laurel (14) CVID with total IgA deficiency. I am hoping some of you

wonderful people can help us figure out the many difficulties Laurel has

encountered since starting on Hizentra in January 2011.

>

> Shortly after starting Hizentra, Laurel became extremely lethargic. She has

nearly constant, debilitating fatigue. She has also gone into a clinical

depression with frequent, severe anxiety attacks. She has had recurrent fevers,

headache, leg pain, loss of appetite, itching, and rapid heart beat very

frequently as well. In short, since she began on Hizentra (40 mL sub-q once a

week) she is not the same child that she was on Vivaglobin.

>

> Are there any other people out there with total IgA deficiency who use

Hizentra? Have any of you had similar difficulties? Even if you don't have total

IgA deficiency, have any of you had similar side effects from Hizentra? Has

anybody decided to stop Hizentra treatment or radically reduce the dose of

Hizentra used?

>

> We are ready to stop the Hizentra treatment, against the advice of our beloved

and much trusted immunologist, because the fatigue/depression/anxiety/fevers are

a more immediate threat to Laurel's health than any infection has ever been.

>

> It is ironic, and disturbing, that the treatment intended to help her seems to

have left her almost non-functional. She is *terrified* of going off the

Hizentra because she is sure she will get a dangerous infection.

>

> I keep quite a lot of data, as many of you do, and the link between starting

Hizentra and the overall downturn in all aspects of Laurel's health is striking.

>

> Thanks to all of you for being out there. Today, especially, I am grateful for

a community of people who understand our challenges and can support us in these

tough situations.

>

> Warmly,

> Betty Hallenbeck

>

>

[Guest guest]

Hello, My son Lucas is 15 and has been on Gammagard SD for the past 5 years and

for 7 years IV prior to that. I have not wanted to switch to Vivoglobin or now

Hizentra due to the side effects I have heard from others. We too have some of

the symptoms you have presented here but they were there PRIOR to starting

gamma. This could be an option to try to rule out whether the Hizentra is the

issue here. My son has suffered form SEVERE anxiety and depression all his life

so hard to know what causes what although I have read that it is MUCH more

common among kids with chronic illnesses than the general population. I hope

this helped you in your journey.

BARBIE  

From: plant4birds <gardenlass@...>

>

>Sent: Sunday, September 11, 2011 6:55 AM

>Subject: Hizentra reactions in DD with no IgA......

>

>

>  

>

> Friends,

>

>This is Betty in Maine. I have multiple sclerosis and total IgA antibody

deficiency. We also have Ian (18) Asperger's syndrome and total IgA deficiency

and Laurel (14) CVID with total IgA deficiency. I am hoping some of you

wonderful people can help us figure out the many difficulties Laurel has

encountered since starting on Hizentra in January 2011.

>

>Shortly after starting Hizentra, Laurel became extremely lethargic. She has

nearly constant, debilitating fatigue. She has also gone into a clinical

depression with frequent, severe anxiety attacks. She has had recurrent fevers,

headache, leg pain, loss of appetite, itching, and rapid heart beat very

frequently as well. In short, since she began on Hizentra (40 mL sub-q once a

week) she is not the same child that she was on Vivaglobin.

>

>Are there any other people out there with total IgA deficiency who use

Hizentra? Have any of you had similar difficulties? Even if you don't have

total IgA deficiency, have any of you had similar side effects from Hizentra?

Has anybody decided to stop Hizentra treatment or radically reduce the dose of

Hizentra used?

>

>We are ready to stop the Hizentra treatment, against the advice of our beloved

and much trusted immunologist, because the fatigue/depression/anxiety/fevers are

a more immediate threat to Laurel's health than any infection has ever been.

>

>It is ironic, and disturbing, that the treatment intended to help her seems to

have left her almost non-functional. She is *terrified* of going off the

Hizentra because she is sure she will get a dangerous infection.

>

>I keep quite a lot of data, as many of you do, and the link between starting

Hizentra and the overall downturn in all aspects of Laurel's health is striking.

>

>Thanks to all of you for being out there. Today, especially, I am grateful for

a community of people who understand our challenges and can support us in these

tough situations.

>

>Warmly,

>Betty Hallenbeck

>

>

>

>

>

[Guest guest]

Could she trial another subq product? Gammagard liquid and Gammunex-C are also

approved for subq. You might also talk to the immuno about Gammagard SD low IgA,

however it's only approved for IV. Some people with below normal levels of IgA

will sometimes have antibodies to IgA in IVIG, even though there is only a small

amount present. IgA antibodies can cause significant reactions in some people.

Lastly, it might be worthwhile to keep an eye on her thyroid function. Two of my

kids (and myself) all have thyroid problems due to auto-immune and/or immune

issues. Hang in there!

(NEMO carrier)

Mom to Hayden (17-unknown PID)

Evan (17-unknown PID)

Conner (17-NEMO; bone marrow transplant 8/17/07)

Kelsey (15-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

Here is an IG product comparison:

http://primaryimmune.org/treatment-information/immunoglobulin-products

[Guest guest]

We experienced similar issues in our 12 year old son with CVID, and low

IgA(17) on Vivaglobin. He kept having " creepy-crawly " nightmares where he

dreamed spiders were crawling on him. He also was lethargic, would run fevers

weekly, and complained of flu-like achiness. He experienced " foggy-brain "

issues that affected his schoolwork. One night he had an attack of the

creepy-crawlies when awake. It was very frightening at the time because I

couldn't convince him that nothing was on his back. In desperation I put ice on

his back, which brought him down enough to be rational. He was still in agony,

and constantly squirming. Next I tried a Tylenol #3, to no effect. I waited an

hour and then tried Benadryl. The Benadryl worked beautifully. Within 30

minutes, he was fine and slept through the night with no nightmares. We gave

him Benadryl every night for a week and had the best sleep we'd all had in 6

months. Concerned about adding so much Benadryl to his other meds, we started

experimenting. We eventually learned that his worst symptoms were 2-3 days

after infusion, this coincided with the peak adsorption time period of the

Vivaglobin. We then started giving him Benadryl at bedtime 48 and 72 hours

after infusion. Our Immunologist said there was nothing in the literature to

support this experience but told us to continue the Benadryl.

We were not able to clear up all his side effects but life was more

manageable. We did start to see a variation in the severity of side-effects

from lot to lot. We even tried to request certain lots from Accredo but was

told they couldn't accommodate that request. We didn't realize all of these

symptoms were related to Viva until we took him off everything 4 months ago to

do some baseline testing to confirm his CVID diagnosis. We are very concerned

about starting up again on Hizentra. I don't know if this information helps

except to confirm it is not in your daughter's head. I have since been told

that Viva was pulled from the market for " neurological " side effects - don't

quite know how to confirm that information. I will be very interested to hear

other's responses to your question.

Vickie (Rheumatoid Arthritis, IBD)

PS I also have a 22 yr. old daughter with High Functioning Autism and a 19 year

old daughter that had Kawasaki's Disease at 3.

On Sep 11, 2011, at 6:55 AM, " plant4birds " <gardenlass@...> wrote:

> Friends,

>

> This is Betty in Maine. I have multiple sclerosis and total IgA antibody

deficiency. We also have Ian (18) Asperger's syndrome and total IgA deficiency

and Laurel (14) CVID with total IgA deficiency. I am hoping some of you

wonderful people can help us figure out the many difficulties Laurel has

encountered since starting on Hizentra in January 2011.

>

> Shortly after starting Hizentra, Laurel became extremely lethargic. She has

nearly constant, debilitating fatigue. She has also gone into a clinical

depression with frequent, severe anxiety attacks. She has had recurrent fevers,

headache, leg pain, loss of appetite, itching, and rapid heart beat very

frequently as well. In short, since she began on Hizentra (40 mL sub-q once a

week) she is not the same child that she was on Vivaglobin.

>

> Are there any other people out there with total IgA deficiency who use

Hizentra? Have any of you had similar difficulties? Even if you don't have total

IgA deficiency, have any of you had similar side effects from Hizentra? Has

anybody decided to stop Hizentra treatment or radically reduce the dose of

Hizentra used?

>

> We are ready to stop the Hizentra treatment, against the advice of our beloved

and much trusted immunologist, because the fatigue/depression/anxiety/fevers are

a more immediate threat to Laurel's health than any infection has ever been.

>

> It is ironic, and disturbing, that the treatment intended to help her seems to

have left her almost non-functional. She is *terrified* of going off the

Hizentra because she is sure she will get a dangerous infection.

>

> I keep quite a lot of data, as many of you do, and the link between starting

Hizentra and the overall downturn in all aspects of Laurel's health is striking.

>

> Thanks to all of you for being out there. Today, especially, I am grateful for

a community of people who understand our challenges and can support us in these

tough situations.

>

> Warmly,

> Betty Hallenbeck

>

>

[Guest guest]

We & #39;re having the same experience with Hizentra. We didn & #39;t see it at

first but it seems to be getting worse each week. Lots of anxiety, fogginess,

tired. We tried the exact same thing - Benadryl. And it does work. But I

can & #39;t keep him on Benadryl forever. We tried to slow down the infusion and

that seems to help too. We & #39;re doing an hour and 40 minute infusion.

I have read that immunoglobin causes a dump of histamine and that histamine (and

cytokine) release peaks at 48 hours post infusion. I imagine that is different

for route of administration. Is subQ worse for histamine sensitive kids where

they would be getting this " dump " of histamine every week rather than once per

month? I know this is all speculation....

7yo CVID

[Guest guest]

My son responds HORRIBLY to  Benadryl. He has a VERY agitated response and it

can carry on for a day or two. We use Gammagard  SubQ since we started it in

Oklahoma and the would not pay for Vivoglobin at the time.

BARBIE  

From: <stacy171@...>

>

>Sent: Sunday, September 11, 2011 1:29 PM

>Subject: Re: Hizentra reactions in DD with no IgA......

>

>

>  

>

>We & #39;re having the same experience with Hizentra. We didn & #39;t see it at

first but it seems to be getting worse each week. Lots of anxiety, fogginess,

tired. We tried the exact same thing - Benadryl. And it does work. But I

can & #39;t keep him on Benadryl forever. We tried to slow down the infusion and

that seems to help too. We & #39;re doing an hour and 40 minute infusion.

>

>I have read that immunoglobin causes a dump of histamine and that histamine

(and cytokine) release peaks at 48 hours post infusion. I imagine that is

different for route of administration. Is subQ worse for histamine sensitive

kids where they would be getting this " dump " of histamine every week rather than

once per month? I know this is all speculation....

>

>

>7yo CVID

>

>

[Guest guest]

There are many people within a closed PIDD group on Facebook that have

experienced the increasing fatigue since starting Hizentra.  Many of them are

switching to the gammagard sub q.  Gammagard also makes s/d with almost no IgA

in it.  My son did it for subq before the Hizentra switch since he has no IgA

either.  You may want to look into a different product. 

-IgG1 and Mannose Binding Lectin Deficiency

Mom to JB-CVID and Mannose Binding Lectin Deficiency