SandraP
Your Replies
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September 23, 2019 at 3:48 pm
I should add that this treatment doesn’t repair any nerve damage you’ve already suffered. It only stops the progress of the disease so that you no longer need treatment of any kind.
September 23, 2019 at 3:32 pmDAVID TUCK — You waited 9 years after diagnosis to begin treatment? Am I understanding your message correctly?
May 29, 2017 at 4:21 pmLooks like Supplement Plan N requires a lot of out of pocket co-pays. My medigap plan, which costs me $48 a month, is all-inclusive. It pays everything that Medicare does NOT cover. I owe no co-pays and receive no bills, ever. Medicare sends the bill to my insurance and they pay it. They’ve never challenged any charge.
Sandy
May 29, 2017 at 4:06 pmI would love to pay less — a LOT less — and I’ve explored the options, but all I get from Medicare is a statement that Part B covers IVIG only for people with primary immune defiency disease (PIDD). The info you posted about the demonstration project was only for people with PIDD. I actually have PIDD, as well as CIDP, but the amount of IVIG used for treating immune deficiency is a fraction of what I need to treat CIDP. I’m going to look into this again, but the insurance arrangement I have now was the best I could find when I started IVIG. I take so many other drugs, some very expensive, that I wouldn’t dare drop my Part D coverage. My drug expenses would go up to about $1,000 a month without it. And my medigap insurance has totally covered the 20% that Part B and Part A didn’t cover for my $50,000 knee surgery and my $80,000 pelvic and spine fracture repairs. I haven’t paid a cent beyond my $48 a month supplemental policy premium each month.
May 27, 2017 at 5:39 pmBKWRM, yes, you definitely need some kind of medigap insurance as well as drug coverage (Medicare Part D) or you will go bankrupt trying to pay your medical bills. IVIG fluids are a drug. They’re covered under Part D drug coverage.
Sandy
May 27, 2017 at 4:55 pmI was told (by Medicare) that Medicare does not cover home infusions unless the patient is bedridden. I pay for in-home infusions with a nurse out of pocket.
My Part D drug insurance cover my Gammunex. My co-pay in the beginning was $4,000 for one month. I quickly went into catastropic coverage, so my monthly co-pay is about $1,000 for the rest of the year.
Sandy
May 26, 2017 at 12:59 amI checked that one out some time ago. It’s another one with very few participants and mostly old posts (primarily about GBS).
Thanks, Jim.
Sandy
May 25, 2017 at 6:51 pmI was able to get in today after I wrote directly to the moderator. Alas, it’s not very active, and most of the posts are two or three years old.
Sandy
May 25, 2017 at 1:25 pmI have all thise same side effects from Cymbalta, lyrica, and Neurontin. Plus extreme dizziness. Never again. Fortunately IVIG has taken away my nerve pain. I wish the same for others!
Sandy
May 25, 2017 at 8:49 amUnfortunately, that’s the group I can’t get into. I’ve tried repeatedly and written to the webmaster, but I get no response. Meanwhile, I see new members are signing up and are able to post. I can read the posts but can’t participate.
May 22, 2017 at 5:50 pmMaybe you should consult a cardiologist about your BP problem during IVIG. Neurologists don’t always know what to do about these things, I’ve discovered. A cardio might suggest something to keep your pressure in a normal range.
My BP sometimes goes UP during infusions. Today it was so high that I took an extra dose of my BP med to get it down to a safe range. My nurse was becoming very alarmed. Most of the time, my BP stays in the normal range. Neuropathy itself can cause BP problems. My neuro warned me about that, and he was exactly right. Add the effects of IVIG and you may have more of a problem. Don’t give up your treatment without consulting a cardiologist!
Good luck!
Sandy
May 20, 2017 at 1:14 pmMy neurologist (who has treated many CIDP patients; other neuros refer patients to him) says it takes 6 months to judge how much IVIG is benefitting a patient, and the only real measure of progress is an EMG. The EMG shows clearly whether nerve damage has stopped, slowed down, or has continued at the pre-treatment pace. Blood tests won’t show any of that. You might ask your primary care physician to do the blood tests if you’re concerned about them.
Sandy
May 20, 2017 at 9:34 amI’m glad you have a diagnosis at last so you can receive treatment. The inability of doctors to recognize neuropathy when they see it is absoluteky maddening, and it delays crutical treatment for many people.
I had Hashimoto’s thyroiditis when I was young, and it destroyed my thyroid function. Fortunately, hypothyroidism is super easy to treat with a daily pill that gives you all the thyroxine you require. You may need repeated blood tests for several months to get the dose adjusted, but after your doctor finds the right level for you, all you have to do is take your pill every day.
May 19, 2017 at 10:10 pmI get 125 grams per month (25 grams per day over 5 days). My doctor said that because I have a severe case of CIDP, with a lot of ongoing nerve damage, he wanted to “hit it hard” and try to stop the disease’s progress. Ask your doctor to explain your dose.
May 17, 2017 at 4:02 pmI’m on Medicare, and have Part D drug insurance. For my first month of IVIG (March of this year), my co-pay for the drug was almost $4,000. That put me into and out of the “donut hole” or coverage gap, and I went straight into catastrophic coverage. Now my co-pay for the drug is less than $1,000 a month for the rest of the year. (Next January I’ll have to pay the $4,000 again.) I have to pay for nursing care out of pocket — another $200 a month. Medicare doesn’t cover home infusions, and the infusion centers around here all use Gammagard, which my insurance won’t cover. I get GammunexC, the only infusion drug FDA approved for CIDP, but no infusion center will give it to me because they have contracts with the company that makes Gammagard. The nurse comes to my house on any schedule my doctor prescribes. My total out of pocket costs for one year for the med and nursing together will be about $23,000. I’ve heard that infusion manufacturers give price breaks to people who need help and apply for it, but I’m afraid I don’t have any info about that. Perhaps someone else does.
