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Living with Polyneuropathy CIDP, GBS, & CMT

Anyone have experience stopping IvIg after a year or more?

#1

I’ve been on Gamagard for over a year (two days every 6 weeks). I have (thankfully) achieved vast improvement! I can now run some (comicly, lurchingly, slowly). My question is: If I stop infusion, am I garanteed a relapse? My nuerologist says maybe. Anybody have any experience?

#2

I don't have an answer but will be in your boat after my last infusion in February. Stay strong!

#3

Hey there. I understand your nervousness. IVIG didn’t work for me as the disease blasted me from August diagnosis but walking to leg paralasys and little motor function in hands by November with unbearable nerve pain. 3 full 5 day/ 6hour long rounds of IVIG didn’t work . In hospital and unable to walk on November 5th with my wife 2 days past her due date with our second girl they hit me with 100 mg of prednisone. Now after 2 months of it, 3,weeks in rehab and a month at home i am walking and feeding my baby. They start the taper off the prednisone feb 1st and I am really scared. Will I relapse? How bad? Back to the wheelchair full time? Wil my 3 year old have to open the milk for me again beacauvim not strong enough? …all we can do is hope… Stay strong and take each day ad a gift no matter what we face. That’s whoa I hope for you…good luck.

1 Like
#4

Your question is just so important. I have been on IVIG for three years now (every 8 weeks 24G) My Doctor and I are just too scared to stop so I will be waiting to hear from you and your experience if you do stop. My gut feel is that I could stop and be OK but I am just too scared to try. At the moment I live a pretty normal life.
All the very best
Glen

#5

I have been on IVIG now every 21 days Since November 2010 when I was first diagnosed with CIDP. I know I can't stop the IVIG because on around day 19 or 20 I start to have tingling in my feet again, they start to feel heavy like walking with cement shoes and my hands start to go numb on and off. I know that my IVIG is wearing off and I need the next infusion. Once I get the infusion my symptoms die down again for a few weeks. So I know I am dependent on the IVIG to keep myself symptom free. I always wish that I would go into remission but I am told by my neurologist that most people being treated with IVIG do not go into spontanious remission. He said you have a better chance of spontanious remission if you are treated with the cancer drugs that surpress your immune system. But I don't want to go that route because of possible side effects and during taking the drugs and long after. So I stay on IVIG and trudge along with CIDP.

#6

My first bout of CIDP left me almost competely paralysed. IVIG, steroids and immune supressants brought me back. I am still taking the drugs, but it has been over a year since my last IVIG. My symptoms.have not returned and I am continuing to improve. Good luck to you!

#7

You sound more like you had GBS and not CIDP. GBS comes on quickly and causes complete paralysis and usually recovery. CIDP comes on very slowly and is chronic and usually doesn't go away.

#8

First off: Thank you all for your caring and insightfull responses! At times I feel guilty, given the personal stories I’ve read on the forum, about my recovery. I know it may be a false hope; but I’ll take any hope concerning this uncertain and mean condition that I can get. I thank God for every day that I can go out and carouse with my dog, or wash my car or open a carton of milk. Whatever happens I’ll take it a day at a time and dwell on the things I CAN do…film at eleven. Again, thank you all. Bob

#9

Here is my story adding to the many heartfelt responses. I was diagnosed with CIDP after multiple tests and a hospital stay in January of last year. I started with IVIG every three weeks, but my symptoms would return before my next treatment so now I get the infusions every other week. My doctor wanted me to try steroids but I didn't want the side effects. I finally agreed to a dose with my infusion once, but I didn't notice any great improvement. My husband reminded me this morning how bad I got prior to my treatments. (I had to wall walk down our hallway forget walking unassisted) People are talking about relapses and that has me confused. I have been gradually declining, balance is an issue and pain seems to come more readily after minimum activity. I am not as bad as I was prior to the beginning of treatment, but I am also not as able to do the things I was able to do at the beginning of treatment. Will a relapse feel as bad as no treatments? It is a gift to hear from all you beautiful people who take the time to share your stories. Peace Nancy

#10

Its always interesting to read the discussions about CIDP. I was diagnosed in May 2012, with an 8 week onset of progressively deteriorating balance, sensation....the whole nine yards. Fortunately for me, I was able to find an excellent neurologist and a beautiful Neurological Women's Facility in Tucson. I did the 5 treatment (took me 9 days because of complications) scenario. I've been back three times sinces, and am going back in outpatient next week for two more IVIG treatments. I agree wholly with 'chirpybirdy'. Sounds like my symptoms and length of time between infusions is between 6 weeks to 3 months. I have never had to take anything but the IVIG treatments and the response to the treatment is immediate for me. I take Gabapentin 100 MG as I start getting to the end of my 'healthy cycle'. It seems to help with the tingling and pain. I have also been taking Vitamin B and eating mostly a Glutin free diet, which seems to be keeping my immune system 'quiet' and healthier. Who knows, I've been throwing everything at this to see if I can extend the periods between treatments as well. I will be interested to hear how you do without the IVIG for a period of time.

#11

Nancy, Thanks for sharing your story. I gotta say I feel less alone reading/talking with folks with whom I have something in common, even if it is this DEMON AFFLICTION. I was in steady decline throughout the first two thirds of my infusion therapy. Then there was a bottoming out, and finally slow improvement. I guess what I’m saying is hang in there. Let’s face it, no one knows how many infusions it takes to “turn the tide”. Peace to you and highest hopes! Bob

#12

I had IVIG once a month for 7 months for CIDP. Have not had it now for 4 years and still continue to improve. I use a cane or "furniture serf" while I am in the house but use a "walker with seat" when I go outside to walk or attend an event where there are lots of people. At 82 years, I don't want to risk a broken hip.

I still am bothered with nueropathy in both feet. Can someone tell me abpot thier experience with Gabapentin

Good Luck and Love to all

Mommarge

#13

I was diagnosed with GBS in March 2012 and had five days of IVIG (Gammunex) treatment. I had immediate improvement and thought my illness had gone away. About two and a half months later, my symptoms returned and that is when I was diagnosed with CIDP. At the beginning of my treatments I was taking IVIG every three weeks and the goal is to extend the time between treatments, but not go too far where the symptoms have returned. You may try that approach with your doctor to see if you can get a baseline for how long it takes for your symptoms to return in between treatments.

Good luck!

#14

Hi Bob - I was diagnosed in June this year and have had IVIG about evedry 4-6 weeks. I added Prednisone in October which I am in the process of tapering down the dose. You can read a lot of success stories at http://www.gbs-cidp.org/forum/success-stories/ too... it might help! Good luck!

#15

I've been on IVIG for 5 plus years. Last year I went from once every four weeks to once every two weeks to hold the effects at bay. Several times last year I had to slip a week or two and I could definitively feel the the escalation in numbness, fatigue and pain. In my case the IVIG seems to be doing something. I've seen other post on the International site [ http://www.gbs-cidp.org/ ] where IVIG did was discontinued without adverse effects.

With that say, I would suggest the a gradual decrease in IVIG dosage and carefully monitoring the effects. I don't think anything comes with a guarantee with this "gift" that keeps on giving.

With the current change in Health Management everyone on IVIG should be concerned about the yet to be determined review board in charge of discerning OUR most COST effective treatment. This especially true of those of us who have reached the "golden years".

Beside the International site you might want to check out [ http://www.facebook.com/groups/2532731679/ ] (CIDP - This group is for those who either suffer, or have endured a diagnosis of the disease CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and the people who have supported them). There may be some individual there who can give you some first hand advise.

#16

My mom stopped IVIG a year after her diagnosis. She has not yet had a relapse and it's been 2 years.

#17

I am so confused on what a relapse is. Does it mean you can be symptom free from pain,tingling,burning and ataxia? I have been on IVIG for a year and never been completely symptom free, just tolerable. Please help define what a relapse is. Thanks Nancy

mdolich said:

Thats wonderful Anne, I wish her many years of good health. Some of us are not that fortunate. I was fine for about a year and a half and thought I was over it, when I had a bad relapse. I've had three bad relapses since I first came down with GBS in 2003. The first in 2005 then another in 2009, and again in 2010.

After each relapse I had to start all over with rehab. I was even on IVIG every three weeks when I had these relapses, you just never know what to expect. Some relapses can be mild where others can be severe. We have people in other support groups I belong too, that are on IVIG and still they have mild relapses quite often. I've even known a few people who didn't have their first relapse till years after they first came down with either GBS or CIDP.

We all hope & pray for the best, ""Stay Strong and keep a Positive Attitude""



Anne said:

My mom stopped IVIG a year after her diagnosis. She has not yet had a relapse and it's been 2 years.

#18

Thank you mdolich. Before IVIG it got to the point where I could barely walk. I can now walk short distances but my symptoms have been gradually worsening. There isn't one moment where I noticed a huge decline, just slow steady increased symptoms. It sounds like this is a common dilemma, I'm still thankful for what I can do. Peace
nancy said:

I am so confused on what a relapse is. Does it mean you can be symptom free from pain,tingling,burning and ataxia? I have been on IVIG for a year and never been completely symptom free, just tolerable. Please help define what a relapse is. Thanks Nancy

mdolich said:

Thats wonderful Anne, I wish her many years of good health. Some of us are not that fortunate. I was fine for about a year and a half and thought I was over it, when I had a bad relapse. I've had three bad relapses since I first came down with GBS in 2003. The first in 2005 then another in 2009, and again in 2010.

After each relapse I had to start all over with rehab. I was even on IVIG every three weeks when I had these relapses, you just never know what to expect. Some relapses can be mild where others can be severe. We have people in other support groups I belong too, that are on IVIG and still they have mild relapses quite often. I've even known a few people who didn't have their first relapse till years after they first came down with either GBS or CIDP.

We all hope & pray for the best, ""Stay Strong and keep a Positive Attitude""



Anne said:

My mom stopped IVIG a year after her diagnosis. She has not yet had a relapse and it's been 2 years.

#19

I have been on it for five years every 14 days 7 hrs for 70 grams each time.

#20

Symptoms haven’t gon away they have just been reduced to semi tolerable.