Your Replies

  • March 13, 2021 at 2:02 am

    My blood pressure was perfectly normal until I developed CIDP. Then it became erratic and required multiple medications. I spent a night in an ER because it was in the stroke range, over 200 systolic, and wouldn’t go down. Then it started dropping as low as 80/49 during infusions. My cardiologist needed weeks to get it stable. It’s all right now, but I have to keep a close watch on it. All the doctors involved agree that CIDP is the cause of the instability.

    March 13, 2021 at 1:56 am

    This change to Medicare was due to take place in January 2021, but I was told that because coronavirus consumed all the attention it failed to get scheduled for a vote in Congress. (sigh) There is some hope it might be passed this year to take effect next year, but we’ll have to wait and see. I was very disappointed to learn it hadn’t happened after all. Some types of home infusion are already covered by Medicare, but not for CIDP — not yet. I’m sorry if my post caused confusion. I posted what I was told at the time.

    January 31, 2021 at 9:37 am

    I had my first Moderna shot recently and had no reaction to it. I intend to get the second shot on the day it is scheduled.

    December 8, 2020 at 1:16 pm

    I have had back problems since my twenties and didn’t develop CIDP until I was 70.

    December 7, 2020 at 9:51 pm

    Yes. It applies to all home infusions. The GBS/CIDP Foundation was instrumental in getting this change in effect. I use Optum, and they are currently training their billing department in dealing with Medicare. If your infusion company won’t work with Medicare, you need to go elsewhere.

    December 7, 2020 at 9:09 pm

    Walter, multiple EMGs by three different neurologists have shown severe demyelination of the nerves in both my legs. By the time I was diagnosed with CIDP, I had lost 80% of the nerve function in my legs. There’s no doubt that I have severe neuropathy, and my first neurologist said my very high sed rate reflected that. Now I have a different neurologist who wants to blame everything on my back. Bad discs in my lower back can’t strip the myelin off the nerves in my legs. And if the high sed rate isn’t related to inflammatory neuropathy, what is causing it? He threw out (by email, which is how he’s treating patients during the pandemic) a couple of horrific possibilities, but I don’t have the symptoms of either. Then he more or less shrugged it off and said he doesn’t know, leaving me to wonder what the hell is wrong with me. I’m going to get an appointment with a good rheumatologist who knows inflammatory autoimmune disorders.

    December 2, 2020 at 10:37 am

    This article doesn’t answer my questions about CIDP. Is it an inflammatory disease? If so, why doesn’t it affect the sed rate?

    October 24, 2020 at 9:05 am

    I have to take IVIG, in any case, because I am immune deficient, with both CVID and hypogammaglobulinemia.

    October 23, 2020 at 10:09 am

    I’ve just talked to my neurologist, and he’s taking me off Privigen and giving me a course of steroids for what he called my “toxic” reaction. Then he’ll decide what to do. He’ll probably put me back on Gamunex. IVIG definitely took away the horrible nerve pains I was having when I was diagnosed.

    October 23, 2020 at 9:26 am

    Ausvoltz — Do you mean 75 grams? 75 mg would be a tiny dose.

    The information sheet about Privigen that I was given by my infusion service warns about blood pressure dropping during infusions.

    October 22, 2020 at 10:10 pm

    Walter K — I know some people suffer continuous decline, and I’m sorry you’re among them. But IVIG and other treatments can be expected to help most people to some degree. My infusion nurse told me that I’m the only CIDP patient she treats who has never improved at all on IVIG. I haven’t declined a lot in four years, although I am worse in some ways. Basically, despite the increases in my IVIG doses, I’m the same as when I started.

    October 22, 2020 at 10:00 pm

    My blood pressure goes down when I get Privigen. I’ve had to reduce my BP medication to avoid having it drop too low. It’s normal afterward.

    October 22, 2020 at 9:07 pm

    The swelling goes down a little overnight, but as soon as I’m up it balloons again. It’s painful in itself, aside from the burning. I never had this reaction with Gamunex. I had no side effects at all from Gamunex. I didn’t get much better either, and I had several bad slumps in the past 3-plus years. My dose was gradually raised from 25 grams per infusion to 50 grams. But I’m basically the same as I was when I was diagnosed. Switching to Privigen was supposed to help. Now this.

    October 22, 2020 at 6:47 pm

    Walter K — Did you stop the IVIG that caused the reaction? What was the alternative treatment? I’m still getting Privigen infusions weekly. My neuro just wants to treat the pain. He says the reaction will go away eventually if I just keep taking it. This burning pain is terrible.

    October 8, 2020 at 3:32 pm

    Here’s the page that explains the home infusion benefit: