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Living with Polyneuropathy CIDP, GBS, & CMT

IVIG and will it relieve CIDP symptoms


#1

I am a newbie here and this is my first post. What I am hoping to get answers to is whether the IVIG therapy will restore the numbness I have in my feet and toes and the pins and needles sensations. Also I experience very bad muscle spasms in my legs...will that go away with treatment with IVIG. I also have aching in my legs, the only way to describe it is that I would say it feels like growing pains. Does anyone else suffer from this.Thanks and hope to hear back from other members!


#2

For me I have numbness in my fingers and left foot (don't know why my right foot is ok). This is how it usually works for me:

after day 3 hand and leg strength start coming back

after day 4 numbness starts going away in fingers and foot

Hope this helps.


#3

My experience, in 3 plus years of IVIG therapy, is that it never goes totally away but does lessen in intensity to the point of being very manageable. I can usually tell, without looking at my calendar, when I am getting close to my next appointment, as my symptoms are more acute. This is usually a few days before and then I get a bounce back within a few days after treatment. I am on every 4 weeks. originally I was every 6 weeks but had to adjust as my time between was getting very rough in the last week before treatment. Hopefully I will be able to maintain at no more than 4 weeks going forward.


#4

It never goes away…it just lessen in intensity. I had an infusion 2 yrs ago and the pain and numbness in my feet and legs is coming back. I think I must get an infusion again…


#5

My experience is that numbness in legs and feet does diminish gradually following IVIG treatment (and it is sustained between treatments). I have only been having IVIG for a few months (every 3 weeks). The main benefit I have experienced is a dramatic restoration and increase in leg muscle strength. Good luck with your treatment.


#6

I have IVIG 45mgs every 4 weeks and have had 92 treatments,coming up to 8 years.The answer in my case is yes,the IVIG has been transformational for me and I hope it is for you too.That's not to say I'm completely symptom free,I still get pain in the legs made worse by any major exertion but the numbness in the feet,hands,chest and lips have gone.I manage any nightime pains,cramps etc with appropriate medicine last thing at night.

I wish you all the best and hope for a similar result for you.

Good luck-stay positive!


#7

I was diagnosed in March, 2014. While everyone is different, IVIG treatments have helped me! FOr the first year, the symptoms were debilitating (numbness, weakness, loss of motor control)..I was on IVIG every 3 weeks had 2 days of 5 hr IVIG infusions! As of last month I am going every four weeks, still 2 days, but second day, half the dose. IVIG over time, can do serious damage on your kidneys, so the docs need to monitor that!! i experience all the symptoms you mentioned, so IVIG does help but not entirely. I usually get more of these symptoms when it's closer to the next infusion. I also get bad headaches, nausea, fatigue from the infusions! Good luck. CIDP is no fun, but thankful there is a treatment!


#8

I can only echo the responses above, as I go for my 9th 2day session. For me, the symptoms were also more tolerable and less intense. I also take much less beclofen and ipubrofen. I am also 6 foot 4 and 295# and being a weight based med, it takes 2- 6 hour days. High dose every 3 weeks( 1ml/kg)Just get a good clinic. I was in one that didn’t have wifi and one tv for 4 pts. Now I have a private room, wifi, my own tv, and no one has to hear about my symptoms…or me theirs!


#9

I have 1 year every two weeks. It has slowed progression. Lightened the intensity. I have gone from a wheelchair and barely able to stand to walking using my cane on limited basis.


#10

I would say that it depends Totally on the individual, as to how much relief IVIG brings.

overall it is sucessful for many and well worth trying if at all possible.

there aren't That many treatments available for CIDP, so to not try one of them is almost criminal in a way

best of luck! :)


#11

I have been on IVIG for about a year and a half. For me the numbness is fairly steady in my hands and feet. I get sharp stabbing pains in my feet at random. On occasion i get a charlie horse cramp in my calve muscles.To get relief from the cramp i bend my feet and toes up, which usually helps. For me the IVIG treatment has given me more muscle strength and endurance over time. When I started my treatments, I couldn't walk! Now I can walk a few hundred feet (without assistance) before I need a breather. I get 95 mg of Gamunex every 4 weeks. It has been a slow process, but a definite improvement over time.

Keep in mind IVIG is not a cure but a treatment. Everyone responds differently. From this site I have come to believe the longer you have gone without a diagnoses the less chance you have of getting back to normal.

God Speed!!


#12

I really appreciate all the wonderful feedback from everyone taking the time to do so. Nice to know most comments are very posititive, and I will give IVIG a chance and look forward to regaining some feeling!


#13

Oh please. Give it a go and continue infusions for 4-6 months. It took some time for it to kick in but it did. I also could not walk-even up and down a curb. Kept falling, etc. now I don’t have the same problem. Also give physical therapy a try. Really helped with balance. Exercise, exercise, exercise. The damaged nerves don’t send great signals to the muscles so keep them moving!


#14

Ditto what Melanie said!! Physical therapy really helped me as well. Also the sooner you get started with your treatment the sooner you will feel better!


#15

Good luck to you. My doctor feels that sensory issues respond better to prednisone than IVIG, which she says is better for weakness and other motor symptoms. My own symptoms are mostly sensory (burning, tingling, spasms, electricity, cold, etc). I am now finishing a course of prednisone, but have decided to schedule what will be my 2nd ivig because the numbness is getting worse in my feet, ankles, and calves, and now fingers and arms. I hope you are able to get some relief. I do find keeping active - yoga, walking, water classes helps me a lot between flare-ups. Best.


#16

I have been receiving IVIG (Kiovig) for 16 months now - one treatment every month. The IVIG will not remove your numbness - it is meant to slow / stop the progression of the disease. It cannot repair nerve damage. The "growing pains" you have in your legs is called "Restless Leg Syndrom" and is a "offshoot" disease of CIDP. I have this also but not only in my legs but also my arms and torso. I take "Siffrol" every night for this and generally it keeps me from having a attack. But sometimes it doesn't work and I have to increase the dose.

Cheers


#17

Many other have given their answers, but I will add mine. My main problem was weakness, and IVIG helped tremendously with that. I had some pain, tingling and numbness in my feet, and it helped with that, but did not eliminate it. I think I will have that until the day I die. Once there is a certain amount of nerve damage, it does not regenerate.


#18

Sadieheidi, people who responded on this thread must be wondering how you are doing. Did you decide to try the IVIG? How are you doing?



And everyone else who responded back in August, how are you doing these days? Your fellow support board members would love to know, I’m sure! How about checking in?


#19

I had 10 treatments of IVIG.Did nothing to relieve the systems.My doctor then put me on a very high dose of Predisone.Within weeks I was almost back to normal.Stayed on the steroids for almost 6 months reducing the dosage until it was small.Almost 2 years later I am off all medication and back to my old self.Golfing every day,swimming the whole nine yards.This coming from a man that needed a walker to get around.Had to sit on a chair in the shower.Couldn`t zip up my pants or write out a check.I really was totally helpless.I thank my lucky stars that medication worked for me.My hope is that it can also work for all you guys.I know first hand what every one is going threw.


#20

I have been on ivig for 7 months 100gm every 4 weeks no relieve of symptoms. I can only walk with a walker. Feet legs and hands are numb. Dr. Will not add predisone as I wished but changed my ivig to every 3 weeks last month. This time it seemed like my legs and part of feet were a lot less numb a few days after ivig but my heels were so numb that I could not walk any better. Then 2 days later the numbness came back in legs by time. I do not know if this is good or bad or if I should insist on the predisone