IVIG Just might kill me!

Sounds like you have a nurse who doesn’t really know what he/she is doing. You should insist on a rate no higher than 60. It is a well known fact that the higher the rate the more likely there will be a reaction. It is your body and not the nurses or anyone elses. Stand your ground. Start at 30 and then go to 60 and stay there. I spent 9 years on IVIG every 3 weeks. Rate and percent solution are big deals. Take charge.

Honey, listen, you do not have to prove to anyone that you are feeling what you are feeling. Just give yourself the permission to feel what you are feeling and trust your experience. I remember when I got my first infusions I was really sick from it and thought people would think I was exaggerating and over dramatizing the whole thing. As it turned out I was experiencing A-ceptic meningitus and my doctor refuses to use IVIG now. Every one of us has different tolerance to and for pain and treatment side affects. No one else gets to define what “Not feeling good” is. Only you. Trust yourself, advocate for yourself, don’t worry about other peoples opinions or feelings.
PS- If you’re in pain or uncomfortable during infusion, do not endure it! speak up and tell the nurse that you need the infusion rate lowered regardless of their time agenda.
Be well, good luck.
Linda

You need a new nurse IMMEDIATELY! She apparently doesn’t know what she’s doing. Any nurse with brains would know WHY you reacted the way that you did, should know that you should NEVER be at that speed again & should know better than pushing it especially if it’s your first infusion.

Are you getting home care? If so, call the company TODAY & speak with whoever is in charge. Tell them that you either get a new nurse who knows what the heck they are doing or you are switching to another infusion company.

I’ve learned through our whole ordeal that you do NOT have to settle. If you don’t like your nurse you get a new one. If you don’t like your home care company, you switch. If you don’t like your dr you search until you get one that you like. DO NOT SETTLE with this.

Is your pump pre-programmed? Emily’s is & the nurse doesn’t ever have to mess with it except to check it before each infusion as a precaution.

The first time that you get IVIG they should be EXTREMELY cautious. They should NOT be ramping you up quickly. The way you are supposed to get infused with IVIG is slow & steady.

You learned you can’t go above 60 so you should NEVER do it again. You should be starting off very slowly & be ramped up at a slow pace.

I’m sorry that you are going through this but now you know where the problem lies & you need to take care of it so you aren’t put into this position again.

Good luck,
Kelly

Welcome – and I agree, you need a new nurse! Are you having the ivig in a hospital infusion center? I’ve had mine there many times and have to fight with the nurses – they’re oncology nurses, not ivig nurses and really don’t know the ins and outs of ivigs. I have very bad reactions to some brands (migraines, chest pains, breathing problems) and have only one brand I can tolerate. And, I like to get my infusion SLOWLY. You should insist that the infusion be slow enough so it doesn’t cause reactions. Hope the future infusions go much better for you.:)

LaMeka,

Don’t let the nurses rush the IVIG. If you tolerate 60 then go stay there!
The first time is nerve racking, you don’t know what to expect or how to react! Try to stay positive and ask lots of questions.

Remember to take Pre meds and take them throughout the day and at night!
Take then the next day as well. Drinks lots.

You know your body the best and if it doesn’t feel right speak up!!!

Let us know how you are doing We are thinking about you!

Rhonda

LaMeka, Please put your wellbeing first Hun! You are the one who needs to insist on a Good Nurse who is knowledgable about giving ivig. Don’t just Settle for anything. What you are feeling is Very Real, don’t allow Anyone to tell you it isn’t. Use your energy on yourself, not on others. You are the Strong one in your family, do it your way. I got aseptic menigitis from my 2nd day of a 3 day infusion of ivig-it was the worst thing I have ever gone through. Insist on a top rate of 60 if you are comfortable at that rate, if it is lower than so be it! It does make a difference! You can make this bad situation into a good experience, just stand up for yourself. You are in control of your life and body, not a nurse. Please keep a positive attitude about all this. Big Hugs!! I’m Praying for You Hun!!

I agree with the others. Take charge of your health Insist on keeping the flow at 60 if your nurse has a problem with that too damn bad. I would also look into getting another nurse since this one does not seem to care what you want or listens to your needs Take care
MJ

does not happen. It occurs [some adverse reaction in about 2 of 5,000 infusions] Two things could be happening: 1- allergic reaction to the actual infusion product; 2- reaction to the infusion process -if proper protocol is not followed, such as too rapid an infusion, reactions that you describe can and do occur; and lastly 3-how the product is handled before your infusion starts.

I have had exactly the sorts of awful reactions/feelings you have had once….in a hospital of all places. Turned out the hospital changed the ‘labeling’ to my prescribed brand of IVIG to “Brand X or equivalent’….then they did not notify me or my doc that they’d changed the brand used. BY LAW they have to inform both of you which product is being ‘inserted’ into you. Hospital nurses informed my doc about my reactions and decided to stop that day’s infusions…I don’t know about you but I hated having 1/2 bag of this precious stuff going into the trash. I called & saw my doc about the reaction, he didn’t think much of the issue, I then called the hospital…they didn’t either. I then webbed up the ‘FDA-Blood Products’ rules and regs and found out ‘we’ all had to be notified of ‘substitutions’ pretty quickly. Some IG products have either glucose or saline diluters, many have differing %ages of IG a or b, a1, a2 and IGm’s. The substitutions without informing patient or doc of all full knowledge can cause very unpleasant side effects. I’d had infusions monthly for 1-1/2 years before this reaction…substitution or bad handling in a hospital…I am not sure. BUT….I called the prescriptioned manufacturer, the FDA and my state medical board. Somehow that infusion clinics’ staffs got trained? They were closed during one month for two days…had to be that? After all that, the nurses would slyly tell me: we admitted one reaction last week, three the week before…etc. It was their way I think of telling me thank you. I quickly changed to home service after I got pharmacy records stating that I’d had substitution IG brands for 9 of 12 infusion sessions at that facility. IVIG infusions are not something you play with switching brands lightly? Such action can cause great damage!
You state that you hydrated well, but, caffeine before they get the line in can cause problems. Once that catheter is in, all is OK. If this was your first infusion and in a hospital? That all behaviour needs a ‘retraining’.. Another issue could be if the catheter wasn’t properly inserted.
I believe I had aseptic meniginitis on that infusion day….had they done the ‘proper protocol’ testings[blood tests] at that time I would have avoided a heap of unnecessary pain. If infusions need to be done over a long time, fine! Let it be a long time! Better safe than sorry, ya know?
IF it was a home nurse, call the nursing company and find out what their protocols/procedures are about infusion rates…many have clear policies to NOT go over X amount per hour. Ask for their policies in writing. Some nurses are like hairdressers? They get paid by the ‘heads’ they do, more heads, more bucks.
Cheryl is right, you have to put your own well-being first. Everyone else is on target about all other aspects. Those headaches tho, they add a new dimension of empathy for migraine sufferers tho, doesn’t it? Mine lasted over a week, and just walking in the house during that time brought spots before my eyes…It is NOT a pleasant feeling. Hope this helps?

LaMeka,

I started my infusions a little each day for five days. I felt like I had the flu after the five days but soon felt much better. Now I take the infusion one day a month over a period of about 8 to 9 hours. On one occasion my IG brand was changed and it made me feel awful. From that day on I always check the bag my self before they start the infusion to be sure it is one of the Gamma products, otherwise I refuse to accept it. Now, I look forward to the infusion because it improves my condition so much. I encourage you to continue the treatment for awhile to see if you adjust to them.

Now, as for others not seeing any visible sign of your illness, just forget it. It’s hard from time to time, but that is another adjustment you will have to make. I found that the Forum is just the place to go for some comfort and understanding. We all share in the experience of not being understood and there is very little sympathy out there. Good luck to you and feel free to call on me when ever you feel the need.

Zack Fisher