Six Weeks Off of IVIG – Hoping For Remission
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February 22, 2012 at 6:51 pm
After two years of infusions every other week consisting of 80g of Gamunex C, I had my last infusion January 8th. My neurologist wants to see how I’ll do. I see him April 18th, and if I am stable at that time, I will be considered to be in remission and can discontinue IVIG indefinitely. Wish me luck! 🙂
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February 22, 2012 at 8:35 pm
Thats exciting!!! GOod luck!!!! Did you ever feel like your symptoms started to return before you were up for your next dose of IVIG in the past two years? Did your symptoms improve at all or just not progress? Sorry i’m new to all of this! Good luck- here’s hoping you are done with all of this for good!!!
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February 22, 2012 at 9:39 pm
GOOD LUCK!
That’s great news! Fingers crossed for you!
Kelly
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February 22, 2012 at 9:47 pm
Hi Goodney,
Good luck to you we will say a prayer for you. When we have done this in the past, our neuro did a ncv/emg to establish where we were and then there was no question when we came back with symptoms and he did another ncv/emg. We made it six months, it was so exciting. As we started getting the symptoms back, they were difficult to decipher between residuals, doing too much etc. So he did another ncv/emg and compared it to the one 6 months prior to be sure. As well, it made it easy to get reapproval for insurance.Just so you know, there is this study I have from a while ago and people DO go into remission, at any age, after all different amounts of time on ivig so it does happen and it can happen for you. We just were not lucky last time around. I think we are going to try again this summer. I just wanted to give you our experience regarding the pro-active measures for the ncv/emg comparison for dx sake and approval for ivig should you need it again.
Best wishes and hope sent your way!! Keep us posted.
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February 22, 2012 at 11:26 pm
wishing you luck 🙂 it’s nice to hear the positive outcomes with this disease.
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February 23, 2012 at 12:57 am
Thank you all so much. I appreciate your well wishes,
When I started IVIG a couple of years ago I was in terrible pain and my legs and feet had gone numb. The IVIG helped almost immediately. My pain became manageable (with the help of 450mg of Lyrica a day — which I still take), and I got most of the feeling in my legs, and some in my feet and toes back. I did get some flare-ups of pain and numbness over time, but nothing permanent. I never sensed I was deteriorating between infusions. My neurologist did tell me I need to scale back my work demands and stress to give me the best chance at remission, but that has been difficult for me to do so far. I had an EMG/NCV in January and will have another one in April. If I am in remission I will then follow-up every six months and then yearly if I am stable.
I asked my neurologist if there was anything in particular I should be wary of, like an increase in pain. He told me pain is not necessarily a negative indicator; in fact, it can signal an improvement in nerve function. He cautioned me that I should return immediately if I noticed any increase in numbness or weakness, which would be signs of loss of nerve function. Since he is in New York City and I am in western Pennsylvania, I have an incentive to return to see him only if really necessary.
I believe my neurologist’s quick diagnosis and aggressive IVIG regimen stopped the progression of my CIDP, and I actually showed improved nerve function throughout the time I treated. At this point my IVIG is “suspended”, not “discontinued”, for insurance purposes.
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February 23, 2012 at 3:11 am
Goodney your neurologist sounds awesome, you are lucky. Our neurologist seems much like yours. We are very lucky, so many people here do not have such great relationships with their docs. My son seems to follow the same course as you, immediate response to ivig, healing on the ncv/emg etc. I KNOW there is a positive light for you both!
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February 23, 2012 at 3:15 am
I can never thank my neurologist enough for what he has done. I am convinced that his skillful handling of my case kept me out of a wheelchair.
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February 24, 2012 at 3:56 am
To Goodney—Best of luck and God speed your recovery and remission!
I have been receiving IVIG for 2 years and 2 months now. Is it protocol to try to wean IVIG ‘s frequency? For example, you were getting it every other week. So, should it be weaned to every 3 weeks, then every month, then 6 weeks, and so forth. Maybe, different doctors have different IVIG scheduling protocols. Just wanted to know your doctor’s thinking. About a year ago, I tried every 2 weeks, but after 1 1/2 months, I relapsed. Should I try again? -
February 24, 2012 at 8:27 am
Hoping for the best, Goodney. Let us know how is goes.
I had to go back to 6 infusions a month myself. Tried reducing to 4 a month for a while but didn’t work for me. I got hit with unbearable exhaustion. My wish for the future is something simple for all us infusion folks like one shot every 3 months. Oh yes, I will try to lessen the treatments again later on. Maybe the next attempt will work.
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February 24, 2012 at 12:36 pm
From what I understand, IG has a long half-life, which means the length of time it takes for half of it to leave your system. Drugs with short half-lives (Xanax, for instance) can cause severe withdrawal symptoms because they leave your system so quickly once you stop using them. Because it leaves your system so slowly, IG basically tapers itself down gradually. I won’t really know how I am doing off of it (absent any significant increase in numbness or weakness) until I am tested in April.
Different neurologists have different philosophies when it comes to cutting back on the IG. Mine stops his patients cold turkey and lets the IG taper itself. I am fortunate that I reacted very well to the IG therapy and made steady improvement over the two years of treatment. As long as I continued to improve, my neurologist kept me on the IG. He told me from the beginning that once I plateaued he would take me off to see if I could maintain my condition without the IG. That is where I am at now.
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February 24, 2012 at 3:09 pm
Emily responded really well to the IVIG at first too. Within 24 hours of her first infusion she was running down the hospital hallway. We are very fortunate to have a neuro that was willing to give her infusions as her body needed them & not go by standard protocol. I honestly believe that’s why she is as active as she is now.
Emily’s neuro wants to take her off of IVIG to see what will happen but I’m not comfortable with that. We’ve kept her on the same dose, 20 grams per infusion, since she was 4. She’s more than doubled in size since starting & we’ve gone from infusions 2-3 times a week to infusions every 5 weeks. We will go to every 6 weeks this summer. I feel like after we get past 7 weeks then I will feel more comfortable stopping the IVIG. I strongly believe she will be in remission. Emily also believes it. She told me the other day she thinks she will be done with CIDP by the time she’s 13. FINGERS CROSSED!
Kelly
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February 25, 2012 at 2:10 am
Emily sounds like she is doing really well. And you sound like you are doing a wonderful job managing her care. I really believe that someday she will be just another young lady worrying about boys and zits, with only a distant memory of once having been a little girl who was sick and got stuck with needles to get better.
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February 25, 2012 at 3:48 am
Oh Goodney…how sweet. But really…boys? I’m SO not ready for that yet! I don’t even want to think of it. LOL
Emily has had a lot going on lately. She competed in her 1st solo skating competition last Sunday & this Sunday her precision skating team is competing in their 2nd competition. We are planning on going to Regionals this year with her team – we will be really close to Dawn. And Emily was just accepted into the National Elementary Honor Society! I guess all these years with straight A’s has paid off.
Kelly
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February 25, 2012 at 10:27 pm
Goodney,
Phenomeanal news for you!!!
I just have one question. WHO IS YOUR DOCTOR??
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February 26, 2012 at 3:58 pm
I treat with Dr. Norman Latov. His office is located at the Peripheral Neuropathy Clinic of Weill Cornell Medical College in Manhattan.
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February 27, 2012 at 12:10 pm
Hey Goodney
Thanks. I heard about him recently. I think he is going to be speaking at the neuropathy suppot group in Manhattan next month on the 15th. What was your weight when you started treatment? Do you have any symptoms now?
Cheers -
February 28, 2012 at 2:40 am
I am a big guy. 6’9″ and 260 lbs. when I started treatment. I do have some ongoing pain, numbness, and tingling in my legs and feet, along with some other intermittent symptoms. I love Dr. Latov. He is one of the nicest people I have ever met, and a world class CIDP specialist. I couldn’t possibly have more faith in a physician.
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