Questions about after IVIG

Beth are you getting IVIG on a schedule? Some people have problems a few weeks later then they need another round of treatment. When is your trip planned for? If your on a schedule for IVIG I would thing after getting a round of treatments would be a good idea. Sorry I never had IVIG. I don’t know much just what I read.

Sue
With CIDP

Beth,

I have GBS – not CIDP – but I wanted to say congratulations on a quick recovery. I am glad to hear you are doing so well. Just watch the tendancy to want to overdo things simply because you feel so much better now than you did pre-CIDP. This seems to be a problem we all have in common. 🙂

Beth,
I was diagnosed with CIDP in Dec. of 2002 and have been receiving IVIG on a regular schedule ever since then. I started out with series of 5 days also. I also saw a tremendous improvement, but found that I needed 1-day maintenance doses every 3-4 weeks or my symptoms would quickly return. I have received 5-day series 2 other times in my treatment when my maintenance doses did not alleviate my symptoms, especially in stressful times. My neuro says that this is to be expected the more active I become. I find that I do much better when I travel if I do it about a week after my last infusion. I hope this helps.

Cathy

beth,

how long ago were you Dxed w cidp? what did they do for you before the ivig? take care. be well.

gene gbs 8-99
in numbers there is strength

beth,

i question the dx of cidp. if in months to come, you do not relapse then i seriously question it & think it should be gbs. time will tell. take care. be well.

gene gbs 8-99
in numbers there is strength

[B]Beth[/B] I am surprised about the GBS/chronic diagnosis. I was under the impression that the chronic version is nowadays called CIDP :confused: In your earlier post you did say the dx was CIDP.

IVIG did not work well with my variant of CIDP. neither did steroids (Prednisone). Yet, I am scheduled for another round of IVIG in 10 days. I have a feeling my neuro doesn’t know what else to do.

Beth,
The best thing you did was to take charge of your own case. Good girl. I was dx C I D P Dec of 02 and have been on a regular schedule of 3 treatments every 4 weeks. Along with Prednisone,. I have found that the heat of summer does me in. But after October I felt better and in January Neuro suggested a longer period between treatments, so i went 6 weeks twice. It was too long for me, I am right back to 4 weeks. Each of us has a different strain or sevarity of C I D P that responds to the meds. One of the above people suggested not overdoing, and I will confirm that. Be very careful. Glad to have you with us. Best of luck.
Mary Ann

Beth,
I wish the best for you. I am glad you found this site early. I was through the worst of my troubles before got here. I was dx in may 2005 after 6 mths of progressive numbness. By the time they took me seriously, I couldn’t walk, hold anything in hands or even dress myself. (let alone my then 1 1/2yr girl). After two hospitals and 4 neuros they decided it was CIDP and started a 5-day treatment immediately. By the 3rd day I was walking with little assistance and by day 5 my daughter was dragging to all the “cool” places in the hospital.

Like has been said before, the first rule of thumb is stay in charge. You know your body and how it is feeling, NOT the Drs. Don’t let them drag you out between any needed treatments. IF you start to feel any slipping on your strength call them immediately and tell them you need another treatment. Next, do NOT over do it. Heat is a definate drag on the system. It has reached just into the 70’s this past week and I can barely walk outside. I do better when been in all day but still not good. Third, if you are planning anything special that will require your strength, be sure to do it about a week after a treatment. I’m at my best then.

I need to get my treatments moved closer together. I was getting 5 days every month for about 8 mths and they have since tried to drop them. Went too far and tried 1 day that didn’t work at all. I’m now on 3 every month but like I told my neuro I feel like my body needs them every 21 days. He wanted to try 3 days a month first. I’ve tried them and they are NOT working so I go Wednesday to start them again. I have been very weak for over a week now and hope tihs will prove to him that some people need them more than every month. Still think I”m his only CIDP patient as he wants to go “by the book” and not stray. I’m not a book and told him so. Hoping he listens now. 😉

Best of luck and keep us posted.

Hi, Beth.

The first thing to remember is that no two of us with CIDP are alike. The course of the disorder and the workable treatment are a bit different for all of us. Mine is progressive in the sensory nerves and relapsing in the motor nerves. Nothing helps the sensory problems, but when the motor relapses start (about every eight to ten months) IVIg has in the past knocked them back pretty well. (The course of the disorder has changed in the past year, and my last IVIg did very little. I’m trying again tomorrow.)

You’ll need time to find out what your body is doing and how long between treatments. I recommend that everyone keep a journal and plan on at least a year to see what they can expect. What that does for your holiday in Italy, I can’t say. I’ve had times in which I’ve gone ahead despite the CIDP and done whatever I needed to be done–not always the wisest course!

Best wishes,

Deb

mary ann,

is it really necessary for you to have prednisone as well as ivig? how much do you take? it has such bad side affects. take care. be well.

gene gbs 8-99
in numbers there is strength

I have kept a journal from day one on my IVIG infusions. Write the lot number off the IVIG bag ( now I just pull it off as it a ” sticky” tag” and put in on the page”’), date, grams, brand, nurse inserting the needle, and how I feel all that day. I keep on a huge kitchen calendar my progress till the next round-3 days each every 2 weeks.

I would darn sure find out how many CIDP folks your neurologist has treated.Ask him-get a second opinion and be your best advocate.

It took years for me to be diagnosed after the Fibromyalia/Chronic Fatigue route.I finally referred myself to a neurologist, he was agasted 😮 at my condition and couldn’t believe I had driven a car to his office.He was also a neuromuscular specialist. Someone was looking out for me that day. 🙂