In Sept., 2011, I was diagnosed with CIPD after many tests and finally a nerve biopsy. Since then, I have gone through 13 IVIG treatments. My left side is so sensitive since the treatments started that I cannot walk on my left heal. I am still very fatigue. I am new to this and am trying to understand it. The balance issue I was having has gotten better but still have all of the neurapathy in my feet. I tested high enough that my dr. told me she could get me approved for all the treatments I will need.....and insurance is paying 100% of my treatments. Is this something I will be doing the rest of my life? Do others have this sensitive issue which makes it hard to walk? I don't want it to progress so am doing the treatments, but am still having so many ssues. Any help or advice is very welcome. I go back for more testing in another week.
I have been told yes. I have been getting IViG since Oct. 2010 and on Cellcept since Dec. 2011. I am going to a Neuromuscular spec. Thursday. Will see if he offers any new advice.
I was diagnosed with CIDP many years ago, but have not had treatment. From what I am reading, there are so many people with varying experiences, but it seems that most seem to keep on treatment once they start, more or less. I pray you are supported and appreciated and find good counsel!
Bless you!
I have been over nine months since my last IVIG treatment and my symptoms haven't returned. I am still taking steroids and immune-suppressants though. The plan is to go off them this summer. It seems that CIDP affects everyone differently.
Is your neurologist up to date on CIDP? Not all of them are (and worse yet, sometimes they won't tell you!). I went through 5 neuros that were not current on it. Luckily #6 was and, when we moved, she helped me find #7.
Great news about the insurance, we also had 100% coverage when I got sick. Other than spending hours on the phone with them, all the time, it was a great blessing.
Keep us up to date.
I was diagnosed with CIDP almost 4 years ago. I have been on IVIG for 3 1/2 years. All I can tell you is that every time my insurance would stop the infusion I would go down hill. When I am on it I don't really get any better, but I don't get worst. I also take Cellcept 500mg twice a day. Good luck !!
I'm pretty much assuming it is forever. Stem cell therapy is a possible exception (see: http://www.livingwithcidp.org/forum/topics/stem-cell-transplant-for-cidp?commentId=6385450%3AComment%3A1224 ). There are other treatments that can significantly extend the time between IVIG (see: http://www.livingwithcidp.org/forum/topics/rituximab-possible-new-cidp-treatment-option). Then there is the diet approach (see: http://www.livingwithcidp.org/forum/topics/the-hunter-gatherer-diet-of-dr-terry-wahls-on-ted-talks) which I am sort of trying. I am skeptical....but really well nourished! My feet used to get sore, but I think I have sort of gotten used to it. I used to use orthotics which definitely helped. Keep doing the treatments and stay on top of it. Best wishes.
Wow....what a wealth of information all of you have given me! I am greatful to all of you for this. I am seeing a neuro-muscular specialist who is very familiar with CIDP. I'm seeing her again next week and with all of your responses, I have tons of questions for her now. I am so glad I stumpled upon this website as I can see it is going to be so helpful to me. Thank you to my new friends:)
I was diagnosed in Feb. Plasma pheresis lasted only 10 days. after more tests and a month later I started ivig. Since then it has leveled off and am improving. I am now walking with the light use of a cane. The ivig is every month. My main problem is endurance and neuropothy in my feet. After my therapy sessions I have considerable pain in my knees, but is usually gone by the next day. I just hope to get back to walking normally. They have only suggested having to use ivig about 6 months. I hope that is right.
I suppose the truth is that your Doctor must answer the question but I have been in infusions for three years now and it keeps the disease in check and allows me to live a pretty normal life. I am assuming that I will be getting infusions for the rest of my life and my Doctor also thinks so. Whilst this is not a pleasant thought the truth is that I am extrememly fortunate that so far it is working for me. Regarding the problem with your heel maybe you need a short term higher dose to try and get rid of the problem. It is unusual for CIDP not to be symmetrical and only one side affected. Is your Doctor sure that the heel problem a CIDP problem?
That is a very good point, Glen. CIDP usually is symmetrical. The nerve biopsy was done on my left ankle. They were supposed to cut 2 inches but for some unknown reason, they cut 6 inches. In the back of my mind, I have wondered if this is why I am having such a hard time with my left foot. If any pressure is put on my left heel, the nerve endings radiate up my ankle and all around to top of my foot. I was hoping that maybe the IViG was trying to heel something in that area but this has gone on for 13 treatments now. I'm seeing the neuromuscular specialist next week so I will add this to my list of questions for her. Thank you for your response:)
From research I've done, CIDP is usually symmetrical, but there are other forms that are not. My CIDP is not symmetrical. I have more numbness in my left foot than right foot, and I have much more difficulty with control over my right hand than my left.
But, I think I agree with you that your biopsy might be what's affecting your ability to walk/difficulties with your left foot.
With respect to your original question, there's no one answer that fits everyone. Some people, as we've heard, go into remission and do not need treatments forever. For this reason, my neurologist tried to systematically back me off of IVIG at one point. It did not work for me. I think I will be getting monthly treatments the rest of my life.
Good luck navigating through the difficulties you are having. Keep letting us know how we can help.
Katie
Tammy said:
That is a very good point, Glen. CIDP usually is symmetrical. The nerve biopsy was done on my left ankle. They were supposed to cut 2 inches but for some unknown reason, they cut 6 inches. In the back of my mind, I have wondered if this is why I am having such a hard time with my left foot. If any pressure is put on my left heel, the nerve endings radiate up my ankle and all around to top of my foot. I was hoping that maybe the IViG was trying to heel something in that area but this has gone on for 13 treatments now. I'm seeing the neuromuscular specialist next week so I will add this to my list of questions for her. Thank you for your response:)
I went yesterday and he said because my CIDP was all the way down from the knee to my toes, it was more in line with alcohol or diabetes. New Doctor. I don't drink and I do Not have diabetes. He SAID... usually CIDP is usually sporadic down the leg. What the hell do they know. It is so rare... I just kept my mouth shut. My nerve biopsy comfirmed I have it. Emory Doctor said "I won't question it." This disease just makes the doctors make you want to feel stupid i think....
Hi Tammy,
My son is having four days if IVIG every month. It works well straight away for about 10 days and then the syptoms return. He has just been prescribed steroids as well. is this anybodiy elses experience and if so have the steroids helped. I am worried about him taking steroids. His symptoms are in his upper limbs and shoulders. His arms become too weak to raise up.
Brenda
I have similar experiences in that the treatment works for a while and then the symptoms return but never worse than before so I am fortunate. If the symptoms are getting worse every time they come back the dose will either have to be increased or something like steroids may become necessary. Clearly steroids are a last resort but I am sure your neurologist is aware of that. I would prefer a larger dose of IVIG or a more frequent dose of IVIG above having to take steroids if that would have the same effect.
I have been getting IVIG treatments for more than 5 years. I am receiving the maximum dose that most doctors want to prescribe (2 gm/ kg of body weight) and have had to reduce the time between infusions from 5 to 3 weeks to function passably. I, like most, will likely receive treatments for the rest of my life, but we are all different and some do indeed stabilize. My symptoms are also asymmetric , my right ankle and leg being weaker than my left.
I was told Thursday That IViG is not supposed to be forever; it is supposed to be for Acute. Not Maintence. Cellcept it to wean you off IVig. My symptoms go down the legs and are symmetric and asymetric. He emplyed that was more diabetic or alcholic symptoms (I am neither). My nerve biopsy came back positive for CIDP. He did not have the nerve biopsy in front of him. Every CIDP patient is different and I think because it is so rare, doctors don't really know just how to deal w/us. I stopped my IViG. I was going into my 23rd month. Did I do the right thing? I don't know. I can always start back. I was tired of going. 5 days a week for 20 months and then we increased them to twice a month for the last 2 months. I deserve a break. I'm on 500 milligrams of cellcept twice a day. The Emory Cinic said there are a lot of immune suppressant drugs we can try and experiment with. And that is the whole goal; get the body to quit attacking itself. It is not an enemy. Basically the sheath that is supposed to be protecting our nerves is being viewed as an enemy. Our body is attacking it. By wearing our body down, maybe it will heal.
I went back to the doctor yesterday. She confirmed what you all were telling me....I will be doing this the rest of my life as well. She moved my treatments from every 4 weeks to every 3 weeks. I haven't been able to walk on my left heel since last Sept. when I had the sural nerve biopsy. She said I have a nerve stump that we may have to kill....but we are going to give it more time. In addition to all of this, I will have to get a port put in soon which I am not happy about. I had breast cancer so lymph nodes were removed on one side. Therefore, I only have one hand they can access veins on. I'm feeling kind of down about the news I got yesterday. I'm doing another treatment in the morning. I guess we just have to take things one day at the time.
Ask for a dual luman power port. This will allow you to have multiple treatments. I was getting potassium via IV on one side and IViG on the other as they can not go thru the same port at the same time. Potas. took 3.5 hours or so and so did IViG so I was spending ~8 hours at the infusion center. This cut my time down to 4 hours. Good luck and try to keep your spirit up although I know that is difficult.