...with Alan. Computer has been down a couple of days, or would have sent this sooner.

Please take care of yourself while Alan is in the hospital. We don't need you both . I think it is a smart idea to give the infusions in the middle of the night so you can sleep through them. They are probably backing it up to 1 a.m. so it can be done by early morning instead of later in the morning.

You both are in my thoughts and prayers.

Right now it' 9:35 a.m. on Thursday. I just came back from breakfast around the corner. I meet a neighbor who is a nurse. She lives around the corner from me. I am speaking to her about my husband and knowing she's a nurse I say to her "Alan is in the hospital undergoing IVIG!! And the look on her face immediately changed and she said "oh my god" I said "oh my god, what????". I became concerned.

She said "that's serious stuff, why is he getting IVIG?" I explained about the neuropathy and she immediately said "many of my patients have neuropathy". I was dumbfounded. I had never told her about Alan because she's a neighbor living around the corner so we just chat about kids, the weather, I never really brought up Alan's PN. So now I have her in my sights and I am sending out question after question.

I said "what do you mean this is serious stuff?" and she goes "well, many people can't take it" and I said "what, you mean the side effects". And she said "well, yes, sometimes they are severe, it depends on how the stuff interacts with his body, some people have more side effects than others". I said "what exactly are you talking about?" and she said "oh some people get rashes, some people have trouble with IVIG".

So I asked her the big question. "DO MORE PEOPLE NOT TOLERATE THAN DO TOLERATE IT????"
And she says "Oh, more people can't take it". And some side effects come in after the person goes home!!!

I said "Really????" Then she took her kid to school so I'm left standing there thinking Alan is going to have something horrible happen to him after he comes home.

Now last night Alan called me and said "melody they changed the time of my infusion from 4:30 a.m. and now they will be giving it to me at 1 a.m.. So I went to bed thinking he's getting the infusion last night at 1 a.m.

After speaking to my neighbor (the nurse), I immediately come in the house and it's 9 a.m. and I think Alan had the infusion at 1 a.m. last night, so I call him up and say "how did it go?" and he replies "I didn't get it yet, they changed it to 10 a.m..So I'll be getting it in a little while." I asked him "well, why didn't you question this and he said "oh I did, and the nurse said the resident over-rided Dr. Goldfarb and put me in for 10 .am. infusion.

So I'll be getting there at 1 p.m. this afternoon. He should still be in the middle of the infusion (and don't worry, I'm looking at the bag and writing down everything I see and will post this later).

Now, since I have no idea how this IVIG is supposed to given, (except I know it's once a day or thereabouts (that's what Dr. Goldfarb said), do any of you know why they would give him the first one at 4.30 in the a.m. and then tell him he's getting it at 1 a.m. from now on, and then they tell him "no, we're giving it to you at 10 a.m.. I am clueless.

And don't believe for a second, that I will be going there this afternoon, like a crazy woman demanding to know what is going on. I know exactly how to ask a question, with respect and diligence. I will be doing just that after I get there.

I just hope someone gives me answers. I am finding that many nurses don't like to be questioned (even if it is with respect). They just want you to lay there and take whatever is given.

THEY HAVE NOT MET ME!!!!!!!

MEL

that getting IVIG IS SERIOUS STUFF, tho probably with less risk of severe reaction than Plasmapherisis. That serious stuff in way of reactions in outlined in MANY places on any brand of IVIG's 'patient info' sheet. I've memorized mine, to the point that when I DID have a serious reaction I'd notified the FDA, State Medical Board and my doc. My initial 'reaction' was changed after my complaints to a SERIOUS one. I believe it was due to a brand switch. I've had that and one 'unusual' reaction in the almost 3 years of monthly infusions. YOU HAVE TO MEMORIZE the signs and act quickly. Cardiac arrest or anaphalaptic shock are rare but have happened.

Web up page 8 of Gammunex at this site:
http://talecris-pi.info/inserts/gammunex.pdf For the whole realm of possible ADVERSE REACTIONS, there are a lot of them. ONE THING you must keep in mind is that IF he continues to use this stuff...NO FLU SHOTS Allowed-ATALL!, it could either make him real sick OR render the benefits of both the shots and infusions useless. This is NOT cheap stuff.
And YES, s/e's can appear or linger for several days after treatment. And they CAN be serious. This stuff isn't handed out willy-nilly nor lightly. Go read IGLiving magazine's back features from the beginning to now.

THAT is why Alan's getting infusions at first in the hospital is important. It could be that the resident doc wants to be there or around during the infusion process, to satisy himself that all is well. Bet Alan will sleep thru it all anyhow.

As for any benefits? I knew right away, for others it can take 3-8 rounds of infusions to show any improvement. It's like meds and their help or not.

Don't forget more muffins-so get busy! - j

Address is http://www.talecris-pi.info/inserts/gamunex.pdf
Forgot the danged www part!

Melody,

I know you are going through a lot right now.

I just wanted to say that my niece was given an IVIG when she was hit with Guillain Barre over a year ago. I know she had more than one. Anyway, the only thing I can recall is that she had bad headaches and it made her sick to her stomach. However, she had also had two spinal taps. So, those are probably what gave her the headaches. Anyway, within a few days she improved rapidly!!! And, the only residual stuff, and from the Guillain Barre only was a slow improvement in her face; smiling and things of that nature. I don't recall her having side effects other than from the Prednisone BEFORE they figured out what was wrong with her.

Also, I know what you mean by the nurses. But in fact, I don't think they are allowed to say too much...doctor's orders I believe. I have had this happen 100 times! Hang in there and I hope Alan gets better!

Well, today was really something. They did not give him the infusion until 4 p.m. Something about the pharmacy screwing up or something to that effect. I was sitting in the visitor’s chair when the nurse brings in the infusion thing and she goes: “he’s getting a 24 hour infusion”. I said “he’s getting what??? Why??, he’s supposed to be getting a 6 hour infusion once a day”. She says to me “No, the computer says 24 hours.” I ask her “let’s check with the pharmacy just to make sure”. She put the machine at 29.17 ml/hr over 24 hours.

Five minutes later, she comes back and says: “There has been a mistake, he’s supposed to get this for 6 hours. She corrects the machine. I wrote everything down.

Here is what the IVIG bag says: EXACTA MIX , EVA CONTAINER

Gamimune-N/POLYGF M) Total volume 700/ml

Made by Baxa Corp.

Now the machine (after she readjusted it) said: 116.2 over 6 hours.

I have no idea what might have happened if she left it for 24 hours. God only knows.

Oh, I just spoke to Alan and he said “the machine broke, it reads OCCLUSION, and they are trying to fix it.”

God help him in this place!!!

Melody

P.S Alan had his flu shot several months ago. I'll run that by Dr. Fred if Alan continues the home infusion thing.

P.P.S. Just googled Gamimune.

What are the possible side effects of Gamimune?
• Gamimune is made from human plasma (part of the blood) and may contain infectious agents (e.g., viruses) that can cause disease. Although Gamimune is screened, tested, and treated to reduce the possibility that it carries an infectious agent, it can still potentially transmit disease. Discuss with your doctor the risks and benefits of using Gamimune.
• Treatment with Gamimune has been associated with the development of kidney problems, sometimes resulting in kidney failure and/or death. Notify your doctor immediately if you develop decreased urination, sudden weight gain, fluid retention or swelling, or shortness of breath. These may be signs of kidney problems.
• Rare cases of aseptic meningitis syndrome (AMS) have been associated with the use of Gamimune. Notify your doctor immediately if you experience severe headache, neck stiffness, drowsiness, fever, eye sensitivity to light, painful eye movements, and nausea or vomiting. These may be signs of AMS. Stopping treatment with Gamimune has resulted in resolution of AMS without any lasting problems.
• Notify your doctor immediately if you experience a rare but serious allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives) to Gamimune.
• Other less serious side effects may also occur. Upon injection of the medication, some patients experience the following:
· anxiety;
· flushing or sweating;
· stomach cramps;
· muscle or joint pain;
· dizziness;
· nausea or vomiting;
· fever or chills; or
· pain, tenderness, or irritation at the injection site.
• Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.

I WONDER IF I SHOULD SHOW THIS TO ALAN. Can't dot it!!!He's too vulnerable right now, he'll think he's coming down with all the side effects mentioned here. Jeeeeezzzz

Hi Melody,

The side affects of IVIG are pretty much the same for every brand - maybe just mention to Alan if he feels not well to let his doctor know.... (and, if during an infusion they get particularly bad like not being able to breath, pain in chest, severe headache or nausea, to let the nurse know asap).... some side affects require immdiate medical attention, others are not life threatening but are very uncomfortable and if the infusion rate is slowed down or even stopped temporarily and then started at a slower rate - they may descrease.... if he does have any side affects - I've found it's important to tell the doctor, not only the nurses - hate to say it but the nurses sometimes brush them off because they dont realize the full realm of them....

A maximum infusion rate of 116ml/hour is a good rate (the faster the rate, the greater chance of side affects) - some people can go much higher, other have to go slower (my max is 100) but again, it depends on the patient...

How is he feeling at this point?

I've been away for a bit (down @ UPenn for some more tests and pain discussions) and I just caught up with your thread. I hope everything goes well for Alan and the Drs get his infusion schedule worked out. I can't offer you any real advice other than to TAKE CARE OF YOURSELF TOO but I'll keep you both in my thoughts and prayers.
Best wishes and a big .
Alkymst

I spoke to him at 7:45 p.m. tonight. He sounded fine. I know if he gets any pains or anything, he'll press the buzzer.

You should have seen him this afternoon. He asked me "where's my hefferin shot??" I laughed and said HEPARIN, HEPARIN.

He buzzed the nurse and some voice behind him booms out of a speaker, "can I help you"? and Alan belts out. "I need a Heparin shot".

I said "you just don't go demanding a heparin shot, if they want to give you one, they'll give it to you. It seems that the nurse was running late with the 2 p.m. meds and she then came around and gave him his shot (in his stomach).

So as of this evening he seems to be tolerating this thing okay!!!!

Oh I have to tell you something funny. When the nurse came at 4 and got the ivig thing going, another lady comes over and introduces herself to us as someone from social services. She says "I have to ask you some questions" and she proceeds to ask him if I was his wife, where he lives, how old is he, can he take a shower by himself, can he go upstairs?, etc. etc.
Alan blurts out "I LIFT WEIGHTS, I'M STRONG AS AN OX". The look on her face was priceless. There he was, in a hospital gown attached to his ivig thing and he's explaining he is STRONG AS AN OX!!! She gave me a look as if she was thinking "is this guy senile???". I simply said "Alan, she is checking to see if you can go home by yourself and do you need any help?" He said "of course I don't need help, I have my wife".

She left.

lol
mel

to this thread, I'm sorry.

But it looks like things are going well.