Just Diagnosed with CIDP

    • Anonymous
      February 7, 2008 at 1:52 pm

      I was just diagnosed with CIDP.
      I have been prescribed IVIg at a dose of 2 grams per kilo of body weight spread out over 4 days.
      My question is…what should I expect from the IVIg treatments? Pain, tired, nausea, etc…
      How big of a benefit should/could they be?

    • Anonymous
      February 7, 2008 at 2:06 pm

      Hi there and welcome!

      Your loading dose of IVIG is standard. Each person responds differently to IVIG. Some people need more than 1 loading dose in order to see any improvements & others see improvements within 24 hours. It varies from person to person.

      A few important tips to know before your infusion:

      1) Drink LOTS of water. It’s extremely important to stay hydrated. It will help with the infusion & also help the nurse find your veins. Make sure that you continue to drink water over the 4 day period. This is very important because some people will get a headache a few days into the dose.

      2) Pre-medicate with Benadryl & Tylenol or Motrin. This will help side effects. Ask your dr if you should also take any meds after your infusion. (The first few infusions that my daughter had caused her horrible head aches. We would give her a dose of Tylenol before the infusion & a dose of Motrin right afterwards)

      3) Make sure that you are getting an experienced infusion nurse. An IVIG infusion should start out slowly & then periodically be ramped up. A slower infusion will bring on less side effects, a faster infusion is more dangerous.

      4) Make sure that the infusion nurse monitors your blood pressure, heart rate & temp. Any drop or raise in any of these could be a sign that your infusion needs to be slowed down or stopped.

      5) Be your own advocate. If something doesn’t feel right or you aren’t feeling good make sure to speak up.

      Good luck,

    • Anonymous
      February 7, 2008 at 4:32 pm

      I can’t add much to what Kelly says, she covers it all re: the treatment. People have different reactions to IVIg ranging from “shoot me please and put me out of my misery” to “what’s the big deal?” I’m pretty much one of those “what’s the big deal” people as I’ve been lucky in the mildness of symptoms. I did try not taking the Benedryl one day and had a pretty bad asthma attack which I haven’t had in more than 16 years so it’s better to be groggy that gasping for breath… I also try not to drink anything dehydrating on infusion/Benedryl day so I skip the coffee and stick with water mixed with Gatorade. If I do start getting that headache after the infusion I know I need to drink more fluids.

      You may hear people talk about “flu-like symptoms” and it really does feel like you’ve got the flu complete with aching joints, fatigue, chills etc. It passes in a few days though my doctor has recommended I continue taking Zyrtec or Bendryl for a few days after the infusion to cut down on that symptom.

      Also, I had a problem with my kidneys hurting for a few weeks after the infusion when I was on the 2g/kg dosage… we reduced the dosage to 1g/kg and upped the frequency and that seems to be working out fine for my kidneys.

      Good luck, try not to be nervous and don’t feel rude about shopping around for a nurse that knows what they are doing. My nurse ONLY does IVIg in home visits… but one time the nursing company sent me a nurse that had never done one before (it was around the holidays…) and it scared the living snot out of me when half the IVIg ended up on the floor because he didn’t hook it up right. It’s your right to interview the nursing company and if you aren’t comfortable that they know what they are doing then call the pharmacy and ask if they can recommend a different agency. Finally, once you find a nurse you are comfortable with make sure you stick with that one, you want your nurse to get to know you, your body and how it reacts to the treatment so having the same nurse every time is essential.

      Whew! Sorry it’s so long, I just drank some coffee…:D


    • February 7, 2008 at 6:30 pm

      Just a couple of other things I thought of, have you had your IGg, Iga levels tested. Different levels work better with different ivig brands. My 11y/o personal experience was: First three infusions were with gammaguard s/d a powder form, he had the severe reactions each time. (aseptic meningitis react.) We were advised by others on this forum to try gammaguard liquid, we did, we still had reactions, but they were reduced by 50%.

      Also, if you are diabetic, sucrose based ivig is a no no. As mentioned, flo rate is IMPORTANT!!!!! My son cannot go above 39. Others go as high as 200. For the first time, I would insist they stay at no higher than 100 (75 if it waqs me and I knew what I know) As you receive treatment regularly, you can guage your tolerance and ask the doc to change the orders accurdingly. WATCH the nurses, ask the doc what the max flo rate is, and ask to be started out slow and built up. DO NOT ALLOW THE NURSE to up it because she wants you to be done..

      For the first time you may do it in a hospital or outpatient clinic. Thereafter, you can do it at home. We use Coram, there is Acreedo, Ultracare, etc. You have to make sure you find an agency that is willing to stay for the whole infusion, not all do. To give you an idea, my son weighs 115lbs, gets 100 grams over 4 days and it takes 6 hours and 40 minutes.

      Continue the premeds for a full 24 hours after to make sure you have no reactions. You could also ask for iv solumedrol for a pre med to lessen the side affects, I do not want to yet because I am afraid of steroids as Kevin has not entered puberty. I am considering a dose on the 4th day as that is when most of his adverse reactions occur.
      PM me if you like, good luck. If you use gamma guard, there is a program you can sign up for called gamma assist that keeps trac of what you use and if you loose insurance benefits, they give you some months free. (more extensive explanation, if interested, let me know)
      DawnKevies mom

    • Anonymous
      February 9, 2008 at 5:43 am

      Hi, Sec, and welcome.

      As with everything else in CIDP, you’ll find that your experience of IVIg may not be the same as that of other people, and that your own experience may differ from time to time.

      I normally have treatment about every six to eight months, but owing to a plethora of medical tests that I needed last year (which indicate that I may have two other autoimmune disorders along with the CIDP–what fun!) I had to skip treatment and the CIDP went spiraling out of control. So now I’m on monthly IVIg. I’m hoping once my immune system is behaving again, I can go back to my once or twice year.

      As everyone else has already advised, drink lots of fluids: Ig makes the blood viscous, so you need the additional fluids to help thin it out. Of course, when you drink lots, you have to go to the toilet more often. There’s nothing more fun than going to the toilet when you’re cannulated (you have a needle in your arm) and you’re having to drag along the stand from which the bottle of Ig is hanging. It’s worse if you’re a woman, and even less fun if it’s that time of month, but therein lies another tale.

      You may need to premed with Benadryl–I do, and it helps keep the flu-like symptoms down. But be sure and mention to the nurse who’s administering the IVIg that you’ve taken it and how much.

      The main side effect that I get is dreadful fatigue (yes, I know: how can we be more fatigued than we are with the CIDP) coupled with insomnia–a great combination. Happily, once the treatment stops the insomnia does as well.

      When I’m having consistent treatment, I usually stay pretty well. I’ve had to use a walking stick for several years because of balance and I’m very clumsy (my dogs love it when I’m in the kitchen; I tend to drop things and, my dogs being hounds, will eat anything–bits of meat are their favourite but they also like dry pasta and rice, and they’re particularly fond of spilled red wine). At the moment I’m on crutches because my legs don’t want to hold me up on their own.

      I had a course of Ig in November, and then another in early January and finished a course yesterday. I started seeing some benefit after the January course–my legs weren’t quite as uncooperative as they had been, and my handwriting isn’t quite as illegible. For me, however, the sensory problems never change: I’m either numb or tingling all over, including such wonderful places as my lips, tongue and ear canals; and the tingling of one certain part of my upper torso is interpreted by my brain as an insatiable itch which, because of the particular part that’s affected, is not one I can scratch in mixed company.

      At any rate, keep fighting.


    • Anonymous
      February 9, 2008 at 6:47 am

      and the tingling of one certain part of my upper torso is interpreted by my brain as an insatiable itch which, because of the particular part that’s affected, is not one I can scratch in mixed company.

      OMG! Me too! Not to get too graphic but it looks like I tried to hug a feral cat sometimes because I scratch at night and don’t realize it.

    • Anonymous
      February 10, 2008 at 7:10 pm

      Thank you all so much for the replys!!

      Info on myself….I am male, 47 years old, married, 4 children, live in Minnesota, and was diagnosed with CIDP on Monday of last week. At first it was a relief to hear that what I had was “just” CIDP and not ALS as was suspected by the first two physicians. But now as I am hearing more about CIDP, I am becoming more worried as to how this will eventually effect me and my family.

      Being new to this I am interested in hearing all I can.

      Thank you all again and I am glad I found this site.

    • Anonymous
      February 10, 2008 at 10:12 pm

      Hello SEC,

      Welcome to our little place in the world. We are glad you found us, but we are indeed sorry that you had to.

      One thing that you need to remember when visiting any support group site is that people who have minimal effects from their disease are not big contributors. Many people with CIDP are able, with minimal treatment, to carry on with only minimal effect in their lives. I know of one fellow, a school principal, for whom CIDP has little effect. He rides his bike, plays with his kids, and does all the other ordinary things of life with no difficulties. He simply needs a maintenance dose of IVIg once a month. I suspect that he represents more of the CIDP population than many of us here. The point is that what you read here is probably more severe than what the average CIDP victim will suffer.

      Dr. Gareth Parry, at the University of Minnesota medical school, is an acknowledged leader in the treatment of CIDP. Should you need a second opinion, he would be a very good option.


    • February 10, 2008 at 10:59 pm

      Kevin is eleven and 16 months into dx. We are now settling into our dx. and learning to deal with things. As MarK mentioned, many people maintain normal lives. Now that Kevin is on a regular treatment plan, I would say other than the 4 days of treatment per month, he is really just as normal as the other kids. He plays basketball, rode his bike 5 miles before the snow came, sleds, plays airsoft gun wars in the neighborhood wich includes running for at least an hour holding a 8lb. airsoft gun. So DO not get depressed, Once you figure out your treatment schedule, it will just be a part of your life, a part that lets you live your life, and you will!!! I have high hopes for Kevin and all on the site. Some times reading not too happy of news on the site can be daunting, but reading the posts is the best source of info for you to learn. You have to remember to stay positive and learn from others experiences. Good luck to you!
      Dawn Kevies mom