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Old 01-27-2010, 03:36 PM
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cyclelops cyclelops is offline
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Join Date: May 2007
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
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I can't say for sure, but, to substantiate continued IVIG, you may need baseline and then tests to show it helps. The other issue is they may want to find out what else is going on with your husband. Since he is 77, some of these tests may be hard on him. I don't know how healthy he is.

I can't say why they want those tests. I did have a lumbar puncture, and a skin biopsy for nerve density, not a sural nerve biopsy, tho, because my neuropathy was suspected to be small fiber. Sural nerve biopsy IS quite invasive, and in fact, is not done much anymore. What kind of biopsy are they talking about, skin biopsy for nerve fiber density, or actually taking a piece of nerve from the sural nerve?? Sural nerve biopsies are falling out of favor, because they do damage the nerve...so, yes, question that.

IVIG is a not a very threatening treatment. IVIG is a blood product. It is antibodies from many people, pooled, and subjected to a 'wash' to make it as safe as possible. I hate to say it is rationed, but, let's just say, it is hard for the docs to make a case to give it and they have to be on the ball to get you to keep it. IVIG, does carry a very minute risk of bloodborne infection.

If I were to go on let's say, Rituxan, then I would be more nervous. That has the capacity to really seriously depress the immune system for months if not years. It can activate the JC virus in very rare cases, and cause PML, a fatal brain condition.

Everything has its downside, but IVIG has the potential to help the Alzheimers for your husband. I don't know how advanced that is, but, gosh, if it would help, that would give him a better quality of life.

Given he has Alzheimers, I would give the IVIG a shot. It isn't approved for that, and the CIDP may in a way, be a blessing, if he can get IVIG...and it helps the Alzheimers, or both.

If you read the side effects of many meds it is scary.

I have had IVIG at home and at the infusion center. I currently have to travel an hour one way to get it, since they won't let me have it at home anymore. My husband has to lose a day of work a month to take me in to the city. He uses vacation time since he saves his sick time for retirement insurance...his job does that. However, he loses 12 vacation days per year for my medical care, and that is tough on him. He will be 60 this year.

Since your husband would likely get a loading dose, which is usually 4 to 5 infusions over a period of time...usually daily to every other day, until the loading doses are given, that is the most likely time he could be sick. Loading doses are not fun. I did get a bad headache and threw up. Once I had a low glomerular filtration rate, but it has been normal lately.

The loading dosees, you may want done in an infusion center if you are nervous about it. Then again, your husband could have to endure the ride home, sick. That is why they opt to give it in home for some people.

Make sure that they infuse slowly, take his BP, pulse and temp during the infusion, and adjust the IV accordingly. Most nurses are knowledgeable about IVIG...(some aren't). Ask the home care provider for a nurse who has given it before. Infusion centers are very experienced with IVIG...so are home infusion services (in general, but always ask.)

As far as getting IVIG for Alzheimers, I am wondering if insurance will cover it despite a positive clinical study? The demand would be so high and IVIG is in limited supply. It makes sense to me since Alzheimer's care is so expensive in the long run, but insurance companies don't usually care about that, because they don't pay for long term care, patients generally do. Most of them exhaust all their assets doing that. You may be lucky on this one, and get the benefit of IVIG for the Alzheimers.

If your husband starts to have any reactions, they will stop the infusion.

Most people that get IVIG, don't have any problems with it.
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