HI KMEB,
Thanks for writing. I'm glad to hear the IVIG is helping you. I hope it helps me as well. I have muscle weakness in my arms, hands and legs, tho I can get around ok. I take Lyrica for the nerve pain and over time had forgotten just how bad the pain was,,,,till I tried a new medication (Topamax) that didn't work at all for me. I was in terrible pain! Now I just want to get well. I love being outside and working in our yard (we have an acre yard that looks like a park). It's a lot of work but I love it.....but right now I don't have a lot of energy to do anything.
I hope you are having a great day! Roxie

Roxie: This is Alan. This is him one day after an IVIG infusion. And because he went to the gym, these are his muscles. LOL

So don’t be scared. You’ll do just fine!!!!

Sue: You wanted his muscles. You got his muscles!!!

HI Mel!
Thanks for the great pictures! He's a great looking guy! I hope I'm as strong as Alan after my IVIG. I will let you know after Thurs. My husband is going with me and staying for the first 2 hrs and then he has to go to work and then my best friend is coming for the last 2 hrs and will drive me home.
Has Alan had any of the side effects? headaches etc?? I can't take any pain meds or Benedryl because of my IC so hope those things aren't going to happen! I guess they can put those meds thru the IC......do you know about that?? Take care! Roxie

Roxie:

You can't take Benedryl because of your Interstitial Cystitis?? How come??
And does your doc know this?? Does he know you can't take benedryl?

And to answer your question about headaches. After his first infusion, he got a headache, they gave him two tylenol and he was fine. When he started the home infusions, no problem. Just a small headache and a fever the day after. His doctor recently told him that fevers are quite common with IVIG. I never knew that. Doesn't happen to everybody. Alan told me to tell you, "you'll do great". He sends you a hug. And I'm sending you flying dolphins because flying dolphins always make me calm!


Melody

HI Mel and Alan!
No I don't think my dr. knows I can't take Bendryl. I'll call his office on Monday and tell him. He does know I have IC but I don't think he knows a lot about IC thought.
I wonder why having a temp is common with IVIG? Does Alan get very tired and sleep after the infusion? Thanks for letting me ask all these questions....I'm just nervous.........Oh ya......where do they insert the needle? in the hand or arm? Roxie

Agree w/ all shared.... most common reactions are headache & tiredness--wanting to sleep after. I also spiked fever few times.

drink plenty water, and unless you have really "bad" veins shouldn't be problem starting. (this was a problem for me --but I had one "good" vein that was usally reliable--in my Left arm "crook"--not very comfortable but the Best option for me. I don't like in hand--hurts & bruises too much. If you have preference Let them know. It's your body!!

My insurance at first only covered treatmt in hospital, then later at home (preferred --it can become boring, but I had a great home health nurse & we had some interesting conversations)

I've heard many "success" storys and hope you are another....

For me I did not achieve the level of results others shared , or that I hoped for, BUT know IVIG was helping me from gettin worse. When treatmts stopped I could reallly feel a major difference--increase pain, neuropathies, dysfunction.

My treatmts have been denied by new Insurance --been in a crazy process of appealing ... Insurance Co. "blames" Dr for not submitting needed med info to make determination; DR says they have been sending all info....
Rep from IVIG Co who supplied me, said she's seen this happen before... w/ Insurance Co who don't want to pay for the expensive treatmts.
My DR , who is my Rep in appeal, said it will be a Fight,

Meanwhile, I've decompensated... but insurance Co doesn't seem to care...they're saving $$$

Wish you the best !!!

Roxie:

Alan usually sleeps during the infusion (because of the Benedryl). They give you this before just in case you have reaction to the IVIG.

While Alan sleeps, I usually make muffins and the nurse and I talk french and we talk for the 4 hours. She's very nice and very thorough. She takes his vitals all the time, his blood pressure, his pulse. She writes everything down in a log.

Now this might be different in an infusion center but that's how they do it when they do home infusions.

So when you think they might do home infusions, just let us know and we'll walk you through it. It's no big thing. Kind of boring.

So don't worry, it just might be your ticket out of all this crap.

Let's keep fingers and toes crossed.
Melody

HI Pono,
Sorry to hear the IVIG didn't help you as much as you hoped and now you have to deal with the rotten insurance companies! Just like in Michael Moore's new movie "Sicko"! How sad!
I hope you win the appeal with the insurance company and you get reinbursted!
I hope all goes well for me but I'm very worried. I was in a lot of pain tonight and had to take extra Lyrica.....I hate having to do that!
Take care! Thanks for writing! Roxie

Mel and Alan,
So Alan never had to use an Infusion center? I hope this one I have to go to is a good, reliable place. I went to an Endoscopy center last year and it was miserable and I won't ever return there. I'd love to be able to do these infusions at home. Did you ask your insurance company if Alan could have them at home? I would think it would be cheaper for the insurance co to have them at home than in a center. Roxie

Hi - about the benadryl - be sure to call your doc if you cant take it orally - I've never heard of them not ordering it before in infusion - theres always a slight chance of allergic reaction with every infusion and its important to have - I know you can have it IV - I'm allergic to epiniephrine which of course is used for shock - so in my "shock" kit they send to my home they have IV benadryl as a backup (and I start out taking a 25 mg dose orally) and also theres a liquid form that can be taken.... also I tke tylenol instead of ibuprofren, which my doc originally ordered - to ward off headache - thats a standard pre-med and I'd ask your doc too....

Weakenes is a very common after affect for many - can last several days - and also slight fever - rather feels like the flu..... I usully get a fever at the beginning of an infusion and then it goes away.... people do get headahes, again, affects everyone differently - as will the rate of the infusion etc... takes a while to find what works best for you.... slowing an infusion can reduce side affects.....

They will want to start in the hospital to watch you closely - then if you move to home - which yes, is much less stress then going to an infusion center - its great.... insurance co-pays etc vary depending on plan, etc... (for expample, if you are on Medicare its paid in the hospital but at home the mediicine has to be convered under Medicare Plan D, etc... varies for all of us) (and yes, at least total cost at home for Medicare is less - $5,000 with the med vs $7,000 in the hosptial each treatment. Dont know how the separate the med cost in the hospital - but at home the med cost portion is about $2,000 - of course then your co-pays etc enter into play)

They put the IV where ever they can get a good vein - just up to you and the nurse and whatever works.....