IVIg next week as well

Good Luck Johnny. We will have to compare notes on how well it went for us next week. Hopefully we both start getting better. Take care!

You most likely will have flu like symptoms during your load dose, It won’t last long. Remember You are the boss, tell the nurses to give it very slow. I once was given my Ivig to fast And i got the worst headache of my life. I used to get 100 grams x2 per month, Now i am down to 80 grams once per month. I no longer take any pain meds or any meds for that matter accept IVIG. I Eat a very healthy diet..Lots of raw veggies And do my best to exercise at least 4 times per week. I have gotten used to the pain and tingling, It now feels normal accept for the cramps in my calves from time to time. Our Father gives us nothing that we cant handle.God Bless you and I wish you well with your load dose…Kyle

Johnny,
Thank God you are able to try IVIg. I started in Jan, a 4 consecutive day loading dose and felt fine after each one. No headache, no flu symptoms, nothing except tired, which I was before from the CIDP anyway. Needed no meds before, during or after. Praise God. Drink lots of water before, during and after, that’s supposed to help! I was only dxed in Dec ’10 so I don’t have as much experience otherwise and am experiencing some other stuff now that I just posted questions about myself, so God bless and hopefully our prayers will be answered!
Wendy 🙂

Johnny:
I am in Altoona, Blair County. Since the beginning, I have received my IVIG infusions at home. I don’t know exactly where you are in central PA, but I am sure there is somewhere close to home where you could receive your infusions. The other thing to keep in mind is to make sure your insurance covers your infusion services at the University of Maryland, especially since it is out-of-state, and perhaps also out-of-network for you.

Johnny3 – What brand of IVIG are you getting? If you get Gammaguard they have a program to help people who receive their IVIG to continue getting it after they lose their insurance. It’s called the Guardian program…you can Google it.

Kelly

Johnny:
My doctor writes a prescription for my IVIG and my IG (Gamunex) is mailed to me from a specialty pharmacy (Walgreen Specialty Pharmacy in Carnegie, Pennsylvania). An infusion nurse from Home Nursing comes to my house every two weeks and does the infusion, which takes four to six hours depending.

I am fortunate that I am covered under my wife’s medical insurance through her employment, as I do not have medical coverage through my job.

Johnny3,

Please dig deep within your employer’s HR Policies. You may find yourself on LTD, collecting your LTD pay and still be an employee, albeit an ‘inactive’ employee. As an ‘inactive’ employee you will keep your employer’s health insurance and pay the same as an active employee. You may also have other benefits.

Also, it is very likely the LTD Company will require you to file for SSA Disability sooner or later. If accepted by SSA Disability, the LTD company may request to be repaid from the first SSA payment you receive, which might go back to your original LTD date.

By the way, if you are ‘inactive’ and on SSA Disability, then Medicare becomes the primary payor.

Why do I say these things? Been there, still doing it.

Gammaguard is another company, we use it too. the program Kelly is referring to is set up in the event you might be without insurance. You have to call to sign up for the program and they contact your neuro and infussion center to verify. Then, should you be without insurance, they will supply you with a certain amount of ivig, I forget how many doses. As well, being in this program insures that should there be a shortage ( when my then 9y/o was dx 4.5 yrs ago, there indeed was a shortage and we had to wait a few days till they could get it from another hospital) you will get your ivig first. For as many people are registered, that ivig is banked for lack of a better word before other hospitals infussion centers etc. get theirs.

Gammunex might have a similar program. About gamunex, they are fda approved for cidp. what does that mean? In my opinion, it means they were the ones who put up the money to do the fda testing so that they could have the right to claim fda approved. just my opinion. gammaguard and gammunex are pretty similar, both use glycine as a stabalizer making them safe for diabetic patients, as opposed to other combanis that use sugars. We have tried both, gammaguard first, we always had the aseptic meningitis reactions, so I switched to gammunex and it was worse. we went back to gammaguard and just split up the dosing. that is what works best for us. we also tried another product, octagam, that had the worst reactions and incidentally is no longer sold in the us????!!!!!

Good luck!