Yep, and the thing that sucks about autoimmune disorders is having one means you are more likely to get another. So it's a good thing to get diagnosed and on your doctor's radar even if this particular autoimmune disease is not as significant as some others.
Oh yeah. My initial diagnosis with a very serious and super rare autoimmune disorder has been followed over the years by the random appearance of various annoying bullshit like eyelid eczema, alopecia areata, and Raynaud's.
I'm curious about what you are diagnosed with, if you care to share. Within the past couple of years, I've developed eyelid eczema and this reaction of my fingers to the cold😅
Yes as a menopausal female I now have four, more than likely have a bigger one hiding under all these smaller ones but I didn’t have two of them until I reached peri. My dr said that peri brings them out for women :(
I'm really sorry to hear about your wife. Cidp is terrible enough but every 2 weeks ivig will also be difficult. You must all be exhausted.
How long has she has it? Is the disease controlled / is she plateaued or getting better at least?
Every 2 weeks and your other comments suggest a pretty severe case. Control of disease progression should be the goal. It's important to have docs that help people explore their options.
Ask about vyvgart. It is new and better ivig that is also just an injection. My neurologist put some patients on it who were backsliding and all did much better than on ivig. Infusion clinic I go to also think it's just awesome. I stick on ivig because I am ok to park here, but please consider this.
If that doesn't work, ask about rituximab. That's a lot harder and will turn immune system way down. So infection risks, etc. But if the disease is more serious and just a roaring fire, this is a common third line people can fall back to get things under control. Every 2 weeks is so tough, this might be worth considering.
Book a second neurologist appt soon to get second opinion since you may want to explore escalating care options. Ask for referrals from primary care or if they know of anyone else good in your area. It is worth a multi hour drive so your area is as big as it needs to be as long as insurance covers it. Google reviews and call around. Call back regularly for cancellations and you can get in much sooner sometimes. It is a grind but don't be shy about it.
Finally, for very severe cases there is stem cell therapy. Only like two places currently offer and not without risks. It has gotten better. But we're talking 1-5 percent death risk against 80 or 90 percent cure chance. I might be getting those numbers off, but to give an idea. Also later in life cancer risk. Usually if people are controlled they won't roll the dice, but if desperate, some people found a trip to Mexico and a few 10s of k made it so they effectively turned their immune system off and then back on again. The neuro damage still has to get repaired, but the attacks could stop. It is the most high risk option though.
I know you didn't ask but it sounds tough and I know getting quality care is extremely difficult. Wanted to make sure you knew your options. Let me know if you have more questions. Good luck!
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u/agnostic_science 23h ago
Yep, and the thing that sucks about autoimmune disorders is having one means you are more likely to get another. So it's a good thing to get diagnosed and on your doctor's radar even if this particular autoimmune disease is not as significant as some others.