Need opinions

    • Anonymous
      June 27, 2008 at 8:59 am

      Hi my fellow friends…I have just few questions to ask your opinions here.
      1. Is CIDP 100% treatable ? (I mean patients can have at least 80-90% normal life)
      2. Does every CIDP patient need IVIG (at least a several times) ? If so, how long and offen in average do they need?
      3. When lucky patients get back to the pre-CIDP status, how long do they need to keep taking medicines (IVIG, Steriod, CellCept, etc)? (I know it’s hard to answer but any benchmark?)

      Now, I have a lot of concerns about my status and need someone to clarify those so that I could plan what I should do for my future… I’ll keep fighting though 🙂

      Thank you in advance for your opinions!!!


    • Anonymous
      June 27, 2008 at 11:27 am

      Before I answer I want to let you know that no one really knows. Each person is different & there haven’t been many studies done on CIDP. I’ll give it my best try though.

      1) Is CIDP 100% treatable ?

      CIDP is most definetly treatable. Some people DO go on to live nearly normal lives.

      2) Does every CIDP patient need IVIG (at least a several times) ? If so, how long and often in average do they need?

      Each person with CIDP needs an immuno-suppresant. It depends on the dr, the patient, the patients insurance or financial abilities as to what treatment they receive. IVIG seems to be becoming the standard treatment though.

      IVIG is usually given in a loading dose over a 4-5 day period. The dose is by weight. It’s figured out as 2g per kg. The maintenance period depends on the patients relapsing cycle. You want to get a maintenance dose before you start to relapse. A maintenance dose was traditionally thought of as being 1g per kg however some people are still getting the 2g per kg as their maintenance.

      3) When lucky patients get back to the pre-CIDP status, how long do they need to keep taking medicines (IVIG, Steriod, CellCept, etc)? (I know it’s hard to answer but any benchmark?)

      No one really knows how long a person will need treatments. Some people go into remission and others will need maintenance doses for the rest of their lives.

      The best advice I can give you is to use Google to find any studies that have been done.

      Good luck,

    • Anonymous
      June 27, 2008 at 11:41 am

      [COLOR=Purple][SIZE=4][FONT=Tahoma]Wow, what great questions and what great answers from Emilys mom. I would just like to add that while we all would like to be able to nail down the closest answers as possible, you will find that this condition is a great exercise in the Zen of living with uncertainty. Your journey through finding your unique treatment will be a matter of trial and error and hopefully others experiences will help guide you. And your experience will definitely help others as well so stay in touch, keep asking and telling your story.
      All my best,

    • Anonymous
      June 28, 2008 at 7:46 am

      Emily’s mom & Linda…Thank you so much for the great answers and comments !!!! Absolutely, if I find out anything valuable for US, I’ll let everyone know…….

      Best wishes for all of us,

      Keep fighting!!!


    • Anonymous
      June 28, 2008 at 8:00 am

      Oh…I forgot to ask something else. Recently, I’ve heard about IG manufactured in China from my Dr. He said the price is a lot cheaper, but the result is not as good as the ones done in the U.S. and European countries.

      Does anybody know anyone who has received IG from China? I’m just wondering if my dr’s comment is right because that would have a huge impact on my financial ability.

      Thank you in advance again…


    • Anonymous
      June 28, 2008 at 10:24 am

      I’m not exactly sure on getting IVIG from China. I honestly don’t think that it is shipped from there. The requirements to donate plasma for IVIG are extremely strict. In the US people who have been to Europe cannot donate due to mad cow concerns. I can’t imagine that IVIG would come from another country.

      I did a Google search & nothing came up that was specific.


    • Anonymous
      June 28, 2008 at 12:46 pm

      I think Kelly and Linda cover it very well. The only thing I can add is that some day are better than others. Each individual responds differently. There doesn’t appear to be a one answer fits all.

      So if today is a bad day, remember that tomorrow holds the promise of a better one.

      Jim C

    • June 29, 2008 at 1:45 pm

      I personally would not get ivig from China, they poisoned dog food and fill our toys with lead???!!!!

    • Anonymous
      June 29, 2008 at 5:33 pm

      I agree with Dawn and Jim, I personally wouldn’t take ivig from China. I have heard that upcoming legislation may change for the better in ivig reimbursement at least with the Medicare guidelines. Right now ivig is considered the standard treatment for me and my neuro physician told me that I would be on Neurontin and likely Imuran for the rest of my life. But everyone is right, each person responds differently, so you keep “tweaking” your treatment until you get it right for you-you may have to retweak(not sure that’s a word)sometimes and trust that someday there will be a cure for all of us. Emma

    • Anonymous
      June 30, 2008 at 6:39 am


      I just noticed that you mentioned 1g or 2g of ivig per kg as a maintenance dose. However, I’ve heard from other sources that we need only 0.4g per kg. Where does the difference come from???? Or it depends on patients’ conditions???

      Please advise!


      PS: Thanks for the comments about ivig from China…if I know something else, I’ll keep everyone posted.

    • Anonymous
      June 30, 2008 at 12:43 pm


      Most people will get a loading dose of 2gram/kg to start. They will then receive a maintainance dose of 1 gram/kg on a regular schedule. Some people will respond to a dose as low as .4 gram/kg. This will need to be discussed with your doctors and of course depends on how you respond to the IVIG.

      Rhonda from Canada

    • Anonymous
      July 4, 2008 at 10:22 pm


      I didn’t see anyone offer this info, so I will pass it on.

      CIDP comes in a couple of different “attack” modes. One is what most people have, relapse-remitting. the other is progressive. Each one seems to deal with different treatments differently.

      Remember that CIDP is an auto-immune attack on your myelin sheath which surrounds your nerve axons. The damage to the sheath causes damage to the axon, and inflammation, and dysfunction.

      In relapse-remitting the attack on the myelin is aggressive and damaging. The body (with medications) knock back the attack, and a period of remission occurs. Later, after a period of time, the cycle repeats. The “Chronic” part of CIDP relates to the fact that relapses will occur over and over.

      IVIG treatment basically floods your system with “good” anti-bodies. The good anti-bodies help your own system beat back the “bad guys” and you win this round. What your Dr. will try to do is to time the IVIG treatment to precede the “attack” phase, and eliminate the relapse or at least limit the damage and/or duration of the relapse. Then hopefully the “remission” time will be longer and the relapse time will be shorter.

      The other type is progressive. This type is a constant attack, or at least there is no improvement after relapses. Usually IVIG does not treat this well, but steroids and long term immunosuppression therapy work.

      I think, at last report 80% are relapse remitting, 15% are progressive, and 5% have complete and total healing for no apparent reason. Within each group are naturally subgroups. There are different levels of severity in each. Some people have relapses every three or four weeks, some may be 6 weeks, some every couple of months, and in each case the attacks can vary in severity from hospitalizing to barely noticeable.

      The same hold true for the progressives. Some CIDP’ers are quad’s in three or four months. In my case, I have had CIDP for almost 20 years. The last 10 have been worse, the last 5 even more so, and this year has been quite difficult. I can still walk for about 2 hours a day, and wheelchair most of the rest of the day.

      So when everybody says it is so different for each of us, that is why. The thing you can do is find out more about your own individual situation and then try to identify with thiose in the same situation. The information they can share with you would be most appropriate. So, learn all you can. Share as much as you can. Many folks here on the forum have lots of information about how to deal with your condition.

      Remember about treatments and dosages. It differs by patient, patient weight, and patient symptoms. Each neurologist may have their own preferences about treatment. My best hope for you is that you can find a treatment regimen that will help you deal with your sutuation successfully.

      Take care friend
      Dick S

    • Anonymous
      July 5, 2008 at 12:43 am

      Excellent explanation of the two types of CIDP. For most the numbers & percentages do ring true. I was one of the weird ones, who had the progressive form & went quad in a matter of weeks. I would remain this way for well over two years. It took high dose chemo to wipe out my immune system & then see what I got back. I might pay for it dearly down the road (chance of leukemia), but in the meantime I have some quality of life to share with my grandson. I wish the same for you…

    • Anonymous
      July 5, 2008 at 11:59 am

      Ayuth – I’ve not ever heard of a CIDP’er who gets .4 grams. Maybe that amount was for a different condition. IVIG is used to treat a wide range of immune issues. Each CIDP’er is different in their regiment. The dosing depends on their weight, symptoms & relapsing schedule.