Being weaned off IVig after 4 years
March 9, 2017 at 8:28 am
Good morning everybody,
I was diagnosed with CIDP in January 2013 at age 65. My initial diagnosis was GBS, but after a relapse the diagnosis was changed. A good chunk (about 5 months) of 2013 was spent in hospitals and nursing homes. It is an experience that I pray will never happen again.
It’s been 4 years and, currently, I’m very strong. I cook; receive assistance from a home care person for laundry, light housekeeping, and long distance driving; drive (short and moderate distances–10 miles so far. I’m counting); and perform daily living activities – I’ve been bathing myself and dressing for quite some time. I still have no tendon reflexes in my legs although they have come back in my arms, but this doesn’t seem to have affected my walking. I have muscle tightness around my ankles and under my breasts, although it feels to be reducing. I walk with assistive devices – more often with a cane now. I have a rolling walker for when I’m going someplace where I may need to rest — like a department store. In big box stores, I use the motorized carts. I’ve changed my diet (on an anti-inflammatory diet per my physicians) and could use more exercise. I am thrilled with how much progress I’ve made since in the beginning I was paralyzed (from over aggressive PT) from neck to toe.
Here’s the thing: I have been talking with my neurologist about taking a “holiday” from the IVig. He thinks it’s the right thing to do at this point. I’ve been on this treatment for 4 years and have come light years from where I was.
I still have feet issues. I can feel, but my feet still feel “bound” inside–don’t quite know how else to describe it. Yet, I can feel if something is on the floor under my feet (think “the princess and the pea” story!) I take gabapentin for the foot pain and discomfort: 400 twice a day and 600 at bedtime. I have two neurologists that agree this is fine.
My primary care doctor, neurologists, and integrative medicine MD think that my nervousness about stopping the IVIG may be more because of my experiences 3 1/2 years ago than the actual potential for an actual decline. I call it sleeping with one eye open. I am nervous about stopping and yet willing to try.
I guess my question is whether you have successfully stopped IVIG. I’d like to hear your experience. I’m scheduled for my “final” in about 2 weeks. My neurologist is not forcing this. He is kind and listens to all of my concerns. He said if I feel *any* signs of decline I can go back on. I’d like to know your experience. I would like to try stopping. Thank you so much!
March 9, 2017 at 8:55 am
Your case sounds similar to mine except that I was not on long-term IvIg. During my recovery I was taking immune suppressant drugs only. Now, six years out, I take nothing.
I don’t know why you would blame a PT for your paralysis. I, too, was paralyzed from the neck down. That’s what CIDP and GBS do.
March 9, 2017 at 9:03 am
Thanks for your response. I’m glad to hear that you’re six years out. That’s encouraging.
It’s a long story about the PT. I was in a nursing facility and they took responsibility for the issue. I wasn’t paralyzed when I went in. But thanks for your comments.
March 9, 2017 at 7:43 pm
I had to stop IVIg on Dec 7 of 2016 (treatment was Sep 2015 – Dec 2016). I’ve done fairly well without the use of immune suppressants and pain meds. The only thing that I noticed was that when I have “flare-ups” (not relapses); The lingering symptoms of the damage of CIDP are more noticeable and I will require more rest because I don’t have the extra help from IVIg anymore. I’ve learned not to “panic” and just calmly ride the mini storms that come and go like the weather. Fortunately, I do not work anymore because of the damage the disease has done (46 years old) so taking the time to rest and knowing my limits helps with recovery.
I hope that you have a smooth transition from IVIg and you do great. Keeping a journal during this time could help you and your DRs keep track of how its going.
March 10, 2017 at 7:26 am
Thank you, Amarie, for your support and suggestions. The journal is a really good idea. I am also retired now and discovering the value of this time to focus on my health. Quite the journey!
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