Gamma guard is discontinuing the powder form of ivig, is this a problem

For my very first infusion, which was scheduled for five days in a row, they told me it was powder form and made into liquid. They told me how they had to mix it, etc. By the end of the fourth day, I had a headache so severe, I wanted to die. I didnt go for the fifth.

Since then, I go to a diff hospital and it’s liquid in a bottle. I get the normal side effects of tiredness but also increased pain the night of infusion and a rash about a week later. but…as far as the powder goes, I dont know if it was the powder or the rate of infusion or both that gave me the terrible headache.

good luck with the little guy !

For my very first infusion, which was scheduled for five days in a row, they told me it was powder form and made into liquid. They told me how they had to mix it, etc. By the end of the fourth day, I had a headache so severe, I wanted to die. I didnt go for the fifth.

Since then, I go to a diff hospital and it’s liquid in a bottle. I get the normal side effects of tiredness but also increased pain the night of infusion and a rash about a week later. but…as far as the powder goes, I dont know if it was the powder or the rate of infusion or both that gave me the terrible headache.

good luck with the little guy !

Emi’s nurse has told me that before the pre-mixed she had to mix the solution herself. She said it was a HUGE pain in the butt. She would have to mix it at home & transport it in the car. Then she had to be EXTREMELY careful with it because IVIG is very bubbly & riding in the car would make it worse.

She said that the pre-mixed is MUCH better to use than the powder for several reasons. One of them is people have less side effects with the pre-mixed. I’m not sure on why that is but it seems to be true for Emily. 3 of her 5IVIG’s given in the hospital at the beginning of all of this were powder. She had HORRIBLE reactions every single time she got them. 2 days after each infusion she would get a high fever, shake, sweat, & cry from pain. THAT could have been what happened with Kevin too. (I just thought of that)

Have you received your box of supplies yet from the homecare company? The first visit is tedious & the nurse is going to ask you ALOT of questions. There’s paperwork to go over & alot of stuff to sign. The visits will not always be like that. Also don’t feel like you have to entertain the nurse while she is there. Emi’s nurse says that alot of people do that & it’s not necessary. There’s alot to cover on the first visit so there won’t be any down time but on other visits the nurse should bring something for him/her to do like a book, knitting or something else. In the beginning I felt like I had to entertain Emi’s nurse too & that just added more stress to my life.

Do NOT be alarmed but you will have to keep a few Epi-pens in your house in case of a reaction to the IVIG. That freaked me out more than anything as I was NOT expecting that. There will probably be some emergency IV stuff too. That’s just there as a precaution. I’m not sure how much supply they are going to send you but we have a 3 drawer Rubbermaid container with wheels to hold all of our supplies. I also have a big cardboard box with extra stuff that doesn’t get used regularly. The Rubbermaid container was the BEST thing I could’ve done for myself. We’ll definetly have more supplies than you do because Emi has the port.

Let me know how you like the homecare. We LOVE it! It’s SO much better than going to the hospital.

Kelly

Before I had GBS I got IVIG for IgA deficiency. At that time U of M used an outside agency for Home Care Nurses called Coram. Anyway, every month I would get the medicine direct shipped to me and then I would have to mix it with saline, make sure it was dissolved and the refrigerate it until my infusion. A royal pain in the a**.

I get GG liquid now and I have less side effects then the other form.

Jerimy

so does anyone know if there is only one concentration level to be used? and what the liquid amount is to equal 2 grams of powered ivig?

gene [not at home]

Gene –

I know that there are different concentrations of pre-mixed IVIG. There’s 5 % & 10 % solutions. Some of Emi’s nurses patients get the 5 % solution but also get more volume.

I’m not sure how the liquid amount compares to powdered. I would think there shouldn’t be much of a difference. I’m comparing it mentally to powdered lemonade & premade lemonade. If you buy a big 2 liter of it that’s already mixed & you want to fill a 2 liter with the powder you still end up with the same amount.

Wierd analogy, huh? Emily has recently discovered pink lemonade so that is the drink of choice around here, LOL.

Kelly

I’ve had over 150 IVIG infusions at a clinic. Just finished my 6 home IVIG with special infusion nurses. They do not like the bottles at all. They called the clinic tech to come get all of the bottles to have him make-up the premixed baggies for them to bring here on infusion day. Glad they can work so closely togethter and they also live near the clinic so not much extra trouble for them getting it.The IV machine was the pits-had to get another decent one.
I got a packaged kit for REACTION EMERGENCIES and it’s clearly labeled in a special draw.Got a big 3 draw plastic cart on wheels to store all the sent supplies. The nurses really appreciate having everything in one location. No boxes to go through and it’s easy to store out of sight. I put the IV infusion cart in a closet and plug it in the night before to charge fully.I did get way to many supplies-especially bags of fliuds. So tell the home health guys/your home nurse to limit certain items. Supposively it’s all inclusive in the package price.
I love using the 10% solution-less fliud has cut down my after reactions like migraines and swelling.
It’s hard to have someone in my home for 7-8 hours-the nurses do paperwork, make phone calls and watch tv.I get to nap in my own bed and not have to drive home any more when it wasn’t safe to drive.

Limekat –

I am SO happy that the home infusions are going well for you. I’ve been wondering how things were going.

You have a machine you need to plug in? Is that the pump?

Emily has a small pump that we carry around in a bag. It uses 3 C batteries…I now have a TON of those thanks to the home care company.

All of the supplies are all inclusive in the price. I’ve added many supplies & asked to not be sent some as well. The price never changes. Right now we are getting 3/4 less supplies than we were when Emily had the Broviac catheder, because I don’t have to flush her port everyday or clean it, and the price is still the same.

The nurses don’t put your IVIG into a pooling bag themselves? Emily’s nurse comes on infusion days & does it herself. It takes all of 5 minutes to do. It’s wierd how our companies do these things so differently.

Kelly

Dawn –

Did you get a copy, from the dr’s office, with Kevin’s Ig test results on it? If so then it should have what his results were & next to those results should be what the normal range is. If you did not get a copy then I would suggest that you start getting them EVERY single time he has a blood test done. I can’t say if an Ig level of 93 is normal or not. The lab that performed Emi’s tests has the normal range being from 592-1723. Your lab probably has different numbers because each lab is different.

The Ig number isn’t relative to people with CIDP. It’s relevant for people with immune deficiencies, which Kevin does not have. He has an autoimmune disease. CIDP/AIDP is an autoimmune disease.

Here is a link to Wikipedia to explain what Ig is. It’s complicated so take it 1 sentence at a time. Go to the dictionary & look up words if you don’t know what they mean. That is what I did in the beginning. It took up ALOT of time but it was worth it.

(Copy & paste) [url][B]http://en.wikipedia.org/wiki/Antibody[/B][/url]

Here is a link that explains immune defiencies:
(Copy & paste) [url][B]http://www.primaryimmune.org/pid/whatis_pid.htm[/B][/url]

A definition for autoimmune disease is: “A disease in which the body produces an immunogenic (ie, immune system) response to some constituent of its own tissue. In other words the immune system loses its ability to recognize some tissue or system within the body as “self” and targets and attacks it as if it were foreign.” (Taken from an ALS website)

I make sure that Emily drinks a bottle (9 fl oz) of water before her infusion, she gets popsicles, juice & water during her infusion & I try to get her to drink another bottle of water after it. She rarely will drink the whole bottle after the infusion. It’s just too much drinking for a 5 year old.

Make sure that you premedicate with Tylenol or Motrin & Benadryl. Is the homecare company planning on doing IV Benadryl or are they letting you give him the pills? IV Benadryl stings when infused so Emily’s nurse doesn’t like to use it. I would HIGHLY recommend the Benadryl Chewables grape flavor. They are much better than the liquid form.

I hope that I helped in making things easier for you to understand. I swear I want to write a book for parents who have kids with CIDP to help explain everything better. I just don’t have the time.

Oh and I’m also banking on Emily’s CIDP going into remission one day. All of us bank on that. You have to remain positive & reminding yourself that it does & CAN happen is the only way to get through the rough times.

Good luck with the infusion.
Kelly

Hi, Dawn.

CIDP is an autoimmune disorder, in which the immune system is attacking parts of the body, rather than an immunodeficiency, in which the immune system is weak or lacking. Regarding the latter, IPOPI says, ‘immunodeficiency should be suspected in every patient, irrespective of age, who has recurrent, persistent, severe or unusual infections’ ([url]www.ipopi.org/news/what-are-primary-immune-deficiencies.html)[/url].

Many CIDPers have noted that, aside from having a debilitating neurological disorder, they’re never ill–they never even catch colds.

Our bodies are amazing things!

Deb
London