Newly CIDP Diagnosis
AnonymousJune 19, 2008 at 2:42 pm
I was diagnosed with CIDP on June 5th. I just want to know what to expect. I already have CVID or Common Variable Immune Deficiency which was diagnosed in 2003, which I get IVIG therapy every three weeks for. But since I’ve been diagnosed with CIDP, I have an appointment with my immunologist to talk about getting the IVIG every week or every two weeks. My neurologist suggests every week.
I knew I had neuropathy in my legs, which I found out about 4 years ago, and it’s progressively gotten worse even with the immune therapy. But now having CIPD, is it going to get worse? I already can’t go places that I have to walk a lot, or places with stairs. I’m limited…sometimes I feel like a prisoner in my own home. Now what? -Amy-
AnonymousJune 19, 2008 at 4:08 pm
Welcome to our site. You will find a lot of very helpful people here. Although I can’t answer your specific question, you will find people at all stages and levels of function. I am still in the “question stage” at times, especially this week. What I have found is that everyone is different, a couple of folks run regularly, one in Australia ran a marathon I believe, others like you, and myself, have problems getting to the mailbox. Anyways, welcome again and read through some of the posts for helpful information and ask what questions you need. I have just gone to weekly IVIG which hopefully will help me out. Take care, Gabrielle
AnonymousJune 20, 2008 at 12:07 am
Welcome! This is a great place to get answers and support. I’m always impressed with how this group sometimes seems to know more than my doc!
I’m not as knowledgeable as some in this group and I’m sure they’ll chime in to help, but it sounds to me like a loading dose of IVIG might be necessary rather than once a week. The one thing that is so frustrating about CIDP is how much it varies from person to person, but the more I listen to everyone here the more I realize that the initial treatment is pretty standard and then it varies all over the place from there!
AnonymousJune 20, 2008 at 11:27 am
Hi HunnyPooh, Welcome to The Family. Maybe the weekly ivig will help. I’m not sure if going on steroids is a doable option with you with cvid, but you might want to ask your neuro about that. You need to find just the right combination of meds to halt the damage that is being done to your nerves in order for them to start healing. Take care.
AnonymousJune 21, 2008 at 8:31 am
Welcome to the site and glad that you found us. I have CVID and CIDP among other things and have been diagnosed for almost 5 years now. Anything I can do to help, answer any questions or whatever, contact me anytime. jerimyschilz at hotmail dot com
AnonymousJune 21, 2008 at 2:32 pm
It sounds like your neurologist is on the right path with the IVIG. He/she will probably start you off with a loading dose of IVIG. You should get it over a 4-5 day consecutive period. Then, if I were you, I’d try to start with IVIG 1 time a week, just to see how it works. If you see much improvement then over time you can stretch it out to every 2 weeks & so on.
Do you subscribe to IG Living magazine? It’s a magazine that has info on IVIG & the diseases it uses to treat. There is usually a lot of info on CVID. It’s free. You can subscribe by going to: [url]http://www.igliving.com/[/url] (copy & paste the link into your browser).
AnonymousJune 21, 2008 at 6:06 pm
I really don’t know how my doctor’s are going to start doing my IVIG’s now since I’ve already been getting them once every three weeks for my CVID anyways. It’s up to my immunologist which I see on July 2nd. Of course my neoro says once a week at least, but doctors don’t always agree.. Very irritating!!
I do subscribe to IG Living magazine….I like it a lot.
Thank you for your input, Kelly, and Thank You Jerimy for welcoming me and offering me your help.-Amy-
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