Great News! Finally approved for IVIG!

[Tinker]

I start Monday and I'm soooo excited.  I've met my eductible and only have $240 or so left for out of pocket.  This is all very good.
I've read a lot of how to get ready for IVIG here.  Irish, I'm looking forward to this like you do...take a lunch, make new friends, sleep, and take it as a feel good day.  I'm really looking forward to it.

The nurse said they will give me 25 mg. IV benadryl and I will receive infusions over 4 days . (She wanted to shorten it to 3 days and I said no, we'd better stick with what the doc ordered cause if anyone could have a reaction......it's me.)

i also rec'd a letter from the insurance that says I am covered for 6 mos. My question is that the insurance letter said I'll get privigen 500mg, immune globulin powder, gamunex injection 500 mg.

I'm assuming that I'll get one of those.  From what Irish wrote, the Privigen is the best and newest.  Is that right, anyone?
Geez, among all the benefits, I hope one of them is that I'll lose this 15 lbs. I've gained in the last 6 wks or so.   I'm gaining wt. like crazy and not eating much. 

[inga]

I get 30 grams of 10% Gammagard per infusion, once per month.  No specific brand is best.  It all depends on what your doc feels is best for you and what you can tolerate.  I am not sure about your dosing.  It doesn't sound familar to me.  I get 400mg/kg of body weight, which is the usual dose.

[irish]

Tinker, What good news for you. I am guessing that you have been approved for these 2 drugs so the doc could make a decision on which drug to use based on his ability to obtain the med. They are always dealing with a shortage of these drugs as there is such a demand for them. Of course, you have such problems they probably want to hit you with these drugs so they can get more rapid improvement. Hoping!!!!!!

I get the benedryl in a IV slow drip with normal saline because when I get the 25 mgm direct infusion (all at once) I literally get stoned out of my gourd. I scared the nurses and other patients to death on my first day. Had the infusion of benedryl and the nurse walked across the room and I told here that I was stoned. I fell asleep and slept for 2 hours. All the patients getting their infusions were making sure that I was ok.

I also get IV infusion of hydrocortisone to help prevent side effects. Most people get this at my clinic unless there is a reason not to. I have never had one of the lousy headaches that people get but I am always sure to take plenty of fluids the day or 2 before and I take water and pp along to drink all day. I have noticed that the day after my infusion I have a weight gain of 2-4 pounds. I assume it is from the gammaglobulin as it is a high protein product. Also, the hydrocortisone and extra fluids add to this.

Good for you sticking to your guns about getting the meds over more days. We have no idea how we will react and it helps to run it in more slowly. I have done the Gammunex IVIG for about 12 months and that was good also. Good luck to you and let us know how you get along. I find this is really the only time that I have permission to sit and do nothing. Feels good.

Also. Make sure you talk with your infusion center to see if they are keeping up with your results and the need for further infusions. My docs office does all this and I never havae to worry about dealing with medicare. I don't know how often they need to renew the docs orders, but I don't havae to worry about that either. Good luc, Irish

[Tinker]

Thanks Inga and Irish,

The letter from insuraace lists 3 different meds:  1)Inj IVIG 500 mg, 2) Immune Globulin, Powder, and 3) Gamunex Injection 500 mg.

It also says : Total services covered 18.   Wha does that mean?

The gal at the infusion center is by herself and very busy and couldn't answer my questions.

Irish & Inga, do you think they are hitting me with ALL 3 of these drugs?  I never even considered that!

Have any of you wondered about maxing out your medical coverage ?  It's a possiblity with these high dollar infusions.

Irish, what do you mean about keeping track of how you are doing?  Should I keep a journal  of how I'm feeling with each treatment?

[inga]

The only thing I premed with is tylenol.  Benadryl gives me movement disorders.  I have no issues in general.  If I do, they will have to do hydocortisone or epi.

I don't know about your orders.  Yours are different than mine.  Sorry, wish I could help you.

[Catilee2]

Tinker,

    That's good news!  You may want to bring extra water with you. Also make sure you stay hydrated when you get home from your treatments.
It has helped me mot get any worse. May it also bring you relief.

Catitee2

[Tinker]

Inga, what kind of movement disorders?  Like restless leg?

[Tinker]

Thanks, Caitlee2.  I will be very hydrated, that's for sure.  I've been reading a lot about pros and cons all about these drugs.  I'm still in.

It takes courage, so I admire all of you who have jumped in with no floaties and managed to get reap the benefits.

I hope I'm one of you!  Still doing research.  My friend today asked me all about this infusion and I told her that it is not without risk, and I named off some of the risks. 

She got freeky and cautioned me about NOT doing it.  But to me, the benefits outweigh the risks.

[inga]

Yes, restless leg in my legs, arms and back. 

[kelene]

I will be starting IVIG at somepoint this summer.. I find out the plan on monday... I was told I get both the benedyral and tyn 3 .. .. the tyn 3 are to help lessen or prevent a headache which is a very common side effect.. does anyone here have a problem with headaches when they have there IVIG

[irish]

The goal is to not get one of those headaches. The headaches are pretty much from not having enough fluid in our system. I have done some research on this and found articles that puts it this way. Our spinal cord contains a certain amount of fluid and makes a certain amount of fluid every hour. We need the spinal fluid to keep the spinal cord moist and to bathe the inside of our brain. When we get low on spinal fluid we get what is referred to as a spinal cord headache.

If you have every had a spinal fluid leak(which my hubby and also my son's BIL have had) you will understand more of this situation. When we get the IVIG the product or solution has a certain percentage of salt in it. This solution enters our body and is able to draw the spinal fluid out. This process has a certain name which escapes my sjoggie mind right now. In other words our spinal fluid level in lowered by the fluid moving from one area to another. Therefore, we have to be sure to drink water and fluids and keep ourselves hydrated the 2-3 days before and I believe, the day of and several days afterwards. I try to keep fluids on board these days and so far no headache---knock on wood.

I am sure that there can be other things that influence how our body operates but I guess that if drinking fluid is what I need to do that is easy enough to do. This type of headache will hit at the back of the head and is not like a normal headache. My doc sent prednisone home with me when I had my first 2 days of infusion and told me to call at the earliest sign of a headache. I get a high dose of IVIG and I think he was surprised that I didn't get a headache. He doesn't know how much I drink everyday.!!!!! Good luck. IRish