Recently Diagnosed with CIDP…next steps?

Hi Cory,

I’m a GBSer and honestly don’t know a lot about CIDP. I just wanted to welcome you to the forum, though I’m sorry you had to get here by way of CIDP. 🙂

There are quite a few folks here that have tried many meds and other procedures. I expect you will receive responses shortly from the CIDP folks.

Best of luck to you!!

Take care,

Tina

Hi there & welcome.

I read an article in the new IGLiving Magazine (it’s free, you can Google it to sign up). The article was talking about IVIG dosage & how some dr’s don’t prescribe enough IVIG. They were saying that some people who don’t see results from the IVIG probably aren’t getting enough of the drug to make a difference.

I’m wondering if you know how much IVIG you received per day. A loading dose is usually 2 grams per kilogram. I think the math is you take your weight & times that by 2.2 then divide it by 5 & that is how much IVIG you should get per day. But I’m terrible at math & I forget the formula often & have to call Dawn (Kevin’s mom) to ask her to remind me, LOL.

What tests were done to diagnose you with CIDP & when did your symptoms start?

Kelly

Sometimes it takes several treatments before there is an improvement.

Also you need to take it frequently as it does not last a long time.

I take it every month, some people have to have it every other day or every week.

See if you can have a chat with a doctor that is knowledgable with CIDP and IVIG

Good luck,
Rhonda

cjsmo,
Welcome to our world! I am new here too, dx Dec 10 and am on IVIg, going next week for treatment #3. If it doesn’t work for me, I am definitely considering a stem cell transplant. Alice (look under Members List, “A” page 3 at the bottom) has had one and you can see how she has done. Thru her pages you can find a link to another fellow “Jim” who has had one also. There is a guy I am following right now named Jon who is in Chicago getting a SCT.
Worth looking into.
Wendy 🙂

I did not show any improvement with IVIG until after my fourth monthly infusion at the loading dose of 2g/kg. And then it was very slow improvement. Only after two and a half years of monthly IVIG did my hands begin to improve. For some people, on the other hand, IVIG works almost immediately. Many believe that IVIG is the “cleanest” treatment, with the fewest side effects, so it is worth asking your doctor to continue giving it to you. I would also encourage you to look into the stem cell transplant program at Northwestern, as that has the potential to be a cure instead of a treatment.

I am so sorry that you are going through this. I was recently diagnosed too, so all the confusion and fear is still very fresh for me. I was diagnosed in Aug.2010. I had pretty good luck w/ IVIG. But just recently I had to have 7 doses in a row to get it to take effect. I don’t know why it’s taking longer to work this time. My doctor wants to start steroids along w/ the IVIG.
I know it is scary when you’re not getting results. But hang in there. Something [I]is[/I] going to work – they just have to find the right treatment. And unfortunately, that takes time.
BTW, did you get headaches when getting IVIG? Just curious. I seem to notice the IVIG working only after I get a really bad headache. If I don’t get a headache, I notice I don’t have as much benefit from it. Weird, but weird is the nature of this disease. :confused:

Cjsmo:
So sorry to hear of your current challenges with this disease. Almost all of us have been through the anxiety/depression that comes with our CIDP diagnosis. Some have struggled to find an effective treatment plan. The good news is that there are multiple treatment options; it just is a matter of trial and error. I feel confident that you will find a treatment combination that works for you. For me, it is 60g of Gamunex IVIG every two weeks, and 450mg of Lyrica every day. It’s no cure, and I still have numbness in my feet and some pain in my arms, legs, hands, and feet, but it’s tolerable and I am able to work and live my life with very little in the way of restrictions. You will adapt, and you will find what works best for you. We all do. Just hang in there, and before you know it, you’ll be telling a newbie the same thing.;)

cjsmo,
As far as the stem cell transplant, you only have to have tried 2 options in order to qualify now.

Who to contact at NW Univ Hosp. if you are interested:

Paula Gozdziak RN BSN

Clinical Research Nurse

Northwestern University

Division of Immunotherapy Department of Medicine

750 North Lake Shore Drive, #649

Chicago, IL 60611

[url]http://www.stemcell-immunotherapy.com/[/url]

(312) 503-1435 phone

[email]pgozdzia@nmff.org[/email]

This is who to get in touch with for further info, but once again check out the ones on here who have gone thru it to really get a picture of how it works.

[url]http://abclocal.go.com/wls/video?id=6656338[/url] this is the doc at NWern who does the SCT, take a listen to learn about it.

Keep it all in mind as another option for some day perhaps.
Wendy 🙂