Your Replies

  • June 12, 2020 at 10:30 am

    It’s the constant inflammation that affects the bones, according to the two endocrinologists I’ve seen. They told me that any severe chronic autoimmune inflammation can damage the bones. They advised me to continue Prolia injections and vitamin D3, exercise as much as I can, and be very careful about avoiding falls. They told me not to expect any improvement in bone density.

    February 19, 2020 at 8:46 pm

    Finding the cause usually comes years before treatment options are developed and tested.

    November 6, 2019 at 9:09 am

    harryswope — I have a Bard port in my chest that is used for IVIG. (Nurses cannot deal with my veins.) A friend who has myasthenia gravis gets PE using the same kind of port. I don’t know yet if my neurologist will go for PE, but that’s the alternative he talked about. I can’t take oral steroids. IVIG is not improving my nerve function.

    November 5, 2019 at 8:06 am

    After you’ve switched to PE, do you ever go back to IVIG? I think I’ve stopped responding to IVIG.

    November 4, 2019 at 12:42 pm

    Harryswope — Thanks for telling me about your experience. Hearing how well it works for you gives me hope. If I have PE, I hope I’ll get it as an outpatient.

    Do you receive IVIG at all anymore, or only PE? I haven’t discussed this whole process in depth with my neurologist yet, so I’m unsure about the relationship between the two treatments.

    October 30, 2019 at 4:58 pm

    Thanks for the feedback, Eviator. I recently switched neurologists because I’d developed doubts about my former, aging doctor. He had told me after every EMG that I showed improvement, but I never felt any better. I had a relapse in late summer and still feel terrible despite an increase in my IVIG dose (I take 40 mg a week). My new doctor looked at all my EMGs and said the latest one was more or less the same as the first one I had, before I even started treatment in early 2017. He wants to do a new EMG, then decide what change to make that could help me. PE is one option. I don’t want steroids with all the side effects — and I can’t take steroids orally anyway because I have an ulcer. As you know, not many options exist aside from IVIG.

    October 15, 2019 at 1:01 pm

    Is PE done inpatient or outpatient? How long does it take?

    October 15, 2019 at 12:31 pm

    Urinary problems are very common with CIDP, unfortunately. So is a very “labile” blood pressure. I have both and have been told they will never go away.

    October 7, 2019 at 8:37 am

    I have a dear friend with severe progressive MS. Over the years I’ve watched her go from an active person to someone confined to a wheelchair and unable to use her hands. Ocrevus is apparently ineffective against that form of the disease, and my friend has not received the drug in the two years since it was approved. It is effective against the relapsing/remitting form. That makes me hopeful it will eventually be used for CIDP, which of course is a relapsing/remitting neurological disease. The list price in the US is $65,000 for two infusions a year (that’s the standard way of giving it), but almost nobody pays that much.

    October 4, 2019 at 10:29 pm

    I did that search before I posted my question.

    September 30, 2019 at 12:34 pm

    In states where MM is not legal, we’re left with CBD oil. But these products are not regulated, and tests done by reputable labs show that many of them don’t contain what the labels claim. Can anyone recommend one that works reliably (at least for you) and seems to contain what the label claims? When products are not regulated, there’s no guarantee of what you’re getting, but personal recommendations may offer some help in choosing. Thanks.

    September 28, 2019 at 6:54 pm

    I take Gamunex and my infusion service has no shortage of it.

    September 28, 2019 at 6:50 pm

    I’ve read that some people have relapsed after a period of time. And yes, it is a grueling process. I’ve also read that doctors prefer to do it in younger, otherwise healthy patients because of the dangers involved. I would definitely not be a candidate.

    September 25, 2019 at 7:10 pm

    The Washington Post had a story on Tuesday about the IVIG shortage that attributed it in large part to the increasing use of IVIG for off-label purposes. Some doctors are even giving it to dementia patients just to see if it will make a difference. Only 6 disorders — one is CIDP — are FDA approved for IVIG, but it’s given for all kinds of things these days, including many types of infections. It’s an expensive blood product that takes a long time to produce. But my infusion service says they have an ample supply and don’t anticipate any shortages.

    September 24, 2019 at 8:27 am

    Michelle — I had terrible headaches when I was getting IVIG five days in a row. My neurologist said some people can’t tolerate that dosing schedule, and he switched me to one day a week for three weeks, then two doses (on NON-CONSECUTIVE days) in the fourth week of the four-week cycle. I haven’t had any headaches on this schedule. I don’t hit a “trough” at the end of the cycle because I have continuous treatment throughout the cycle. I do feel tired after each infusion, but that effect is gone by the following morning. Maybe a change of schedule would be worth discussing with your husband’s doctor.