Hi guys, hope you are all doing well. My mom was recently diagnosed and going through her second round of five day ivig. Her first round wasn’t of much help and i am hoping that the second one proves effective. I have a couple of questions, I know the disease is very patient specific and the outcomes of treatment aren’t really generalized, however I want to know how normal everyday life is for most of you? Do you work? Do you drive? Can you guys cook? Also how soon after ivig did you guys tend to see an effct? And how do you know that ivig is proving effective? I would really appreciate any input!
The effect of my IviG took 2 weeks to kick in, nevertheless, we tried to adjust the dosage and by doing this my CIDP became much worse. I'm at 120 grams every two weeks, with a twice daily dose of Imuran, and I have now reached a stable plateau again. However, at this very large dose, I could suffer kidney and/or liver problems.
Life will never be the same for me. I was a professional musician, now with CIDP, I will never play for live audiences again. There is no cure for CIDP, only management of problems of lower neuron/ sensory-motor disabilities. However, if the diagnoses was made early, a partial recovery is possible to a certain degree. Google your computer for CIDP/Gualline-Barre Syndrome until is smokes and catches fire; although, from the questions you've asked you may have already.
I cook, clean and drive my wife around... when she carries her whip around and commands me to! LOL.
A foot-drop or hand-drop precludes the normal walk/run//work joys and routine stuffs of life. If one has visual problems, hearing problems or if one's hands are effected with severe neuropathy, I would not recommend driving, flying, professional rollerskating, etc.
Hearing, vision? I have drilled deep down with searches of CIDP and here on the forum I've read about hearing/vision problems. In my present IvIG therapy, when it really works well, I realize improvements everywhere on my body, including vision and hearing.
The problem that I never seem to mitigate is sensory/body awareness when my eyes are closed; and of course, my left foot, foot drop. I'm beginning to realize that CHRONIC means this disease is with me forever. I have no other choice but to find a new normal.
Nooooormal, what's normal, lol. Take CIDP in stride. I have horrible pain/stiffness at times, and that is the real bug-a-boo! I was driving my family crazy with constant whining about pain and medical problems. I decided to NOT make that my new normal. The varied treatment for CIDP work, it just takes time. Cannabis also works for me
CIDP suffers are lucky in as much as we have one of the few treatable lower neuron disease.
I do strenuous exercise: swimming, weight machine, free weights, stationery bike and lots of walking (and mowing) on my large yard. At times, these exercise get me over "the hill" after IvIg treatments.
I was diagnosed with CIDP in December 2012. While I had a fairly rough 6-7 months I now receive IVIG monthly and for me it has been effective. I can do most everything I did before. About a week or so before my next treatment I usually start feeling weakness in my legs and arms. I usually feel improvement about 3-5 days after treatment. Everyone responds differently but so far I have been lucky. Hopefully your Mom responds well.
I was diagnosed in August, 2013 after a year of hell. I started IVIG in October. My treatments were only one once a week. It took awhile for me to have any effect from them. Then I'd have one or two decent days, then go back downhill until my next treatment. Then it was like I hit a brick wall. The treatments just stopped working. I had no decent days, all I did was sleep. So my neurologist stopped the treatments. That was in February. I've had no treatment of any kind since. Then I went into a relapse. I am always in constant pain, but It got worse. The cramping, creepy crawlies, electrical shocks, etc. all got worse. My vision is horrible. I wear glasses and still cannot see. I went back to using my walker. I have not drove since July, 2012, I have a lady come in once a week for a couple of hours to mostly do my floors, then other things if she has time. My sister does my dishes and makes my bed. She is also my ride to everywhere.
I have had a loading dose and two subsequent treatments a week apart. Two day after treatment I improve breathing energy alertness Ian good for a few days and then crash befor the next treatment. Cymbalta gralise a hydra condone keep the pain in check my vision is lousy it wanders . I am weak and still tire easily. Pain in arms legs and lower jaw. I push to do laundry and maintain the yard . My wife drives me 99 percent of the time I have lost a lot of grip in my hands.i am off on disability. I don’t like to except help but I have fallen a few times. I try not to complain I just let my wife know when I am crashing.
Thank You so much for your prompt and detailed replies. I guess CIDP like a lot of other auto immune disorders has variability in it’s symptoms and recovery. She’s on her third day of her second course of the five day IVIG. She has a lumbar puncture next week for her protein levels since they were quite high the first time around. Her symptoms are still very acute. Initially her diagnosis was of GBS and then it was switched over to CIDP. She has a lot of weakness in her legs and has problems with climbing and going down the stairs. She recently started falling as buckling her knees. Her major issue is numbness and feeling as if her feet are heavy and she’s wearing lead shoes. We got her a walker to use around the house. And even then she needs to be accompanied for support. I hope and pray that it gets easier for all of you and for my mom. Also does anyone take any B vitamins. I’m giving her B1, B6 and B12. Anything else you feel that helps. Oh and she had a strawberry tongue, she lost a lot of taste sensation and its very numb, her neurologist hasn’t checked it out but by looking at it I felt that she has pernicious anemia so I gave her B12.
I take a multi vitamin with B. At the onset of all this, lab results showed my vitamin D was very low. My Neurologist put me on a high dose for a few months so I have continued taking a OTC vitamin D supplement. I have no idea if this is helping but I have focused on healthy eating. Making sure I get plenty of antioxidants, probiotics, etc.
Is she under the care of a Neurologist? How long was it from symptoms to treatment?
I hope your Mom responds to the second round of IVIG.
She is seeing a neurologist and a physiatrist, an ot and a physiotherapist. Her back pain started on dec 20th 2013 and then she had this shingles like pain in a band form starting mid January 2014. She saw the physiatrist and he said it was gbs from the emg and ncv around feb 15th. And her treatment started march 24th after the lumbar puncture showed increased csf proteins. So from the first cidp/gbs like symptoms to treatment took roughly 2 months. But the progression during that time of her leg numbness and generalized weakness was quite acute.
As you have figured out, we are all so different in how cidp affects each of us and how we respond to the medications. It's trial and error. There's lots of options for your mom if she doesn't respond to the first line of treatment. Journals have called it an art to treat cidp and in my case that would be true. I was diagnosed with gbs and went through 5 day loading dose. It wasn't enough. I did, and still do, neurological tests on myself daily to gage function. I could measure my loss of function and called my neurologist. I was then diagnosed with cidp and had an additional 5 day loading dose followed by 12 weekly infusions of high dose methylprednisolone. We stopped all medications because of significant improvement and I did great for a couple of months and wishfully thought it was a sub-acute case of gbs. I had a setback and went back on weekly infusions of both and then tapered over time. It wasn't a straight line but more of a roller coaster. I had hoped it would be a 3 year case of cidp but it wasn't. Over the past 5 years, my condition has spanned from complete helplessness and pain to being able to run, and minimal pain. My current medication is a small dose of ivig, every 4 weeks and I am still weaning. This past year has been less of a rollercoaster. I have figured out some ways to stabilize. I can only speak for myself but the medicine alone was not enough to get me to this point. The first thing I did right was to keep moving, without exception. My digestive system was not functioning well and adding to my troubles. I finally gave in and changed my diet. I am off gluten, eat organic when possible, and stay away from high oxalate foods. I eat mega amounts of nutritious foods to get most of the vitamins and minerals. I use Now brand, calcium citrate, magnesium citrate, b's and vitamin d. I get the potassium I need from bananas and honey dew. Exercise is critical to maintain all the body's systems that are working well and heal the ones that are not. I have also found out that I was having setbacks from medications and got off them. Living with no prognosis used to bother me most of all. No one would say how long it would take to get better or even if I would get better. I didn't know if all the work necessary to get well would have an impact. And if it did, how long it would last? In facing all the fears and doubts with a leap of faith, research, and making changes, I continue to get better everyday. The love and support of my sons and husband mean everything to me.
Your mom is lucky to have you. Best wishes to your family.
Hi mabes
Thank u so much for your detailed reply. I am so glad you are doing well and figured out the right treatment regimen. She is currently getting her last dose of her second course of ivig. She has acknowledged a difference in the stiffness of her legs but the ivig gave her bad joint pain in her knees which has become a hindrance in her walk. Once she starts stablizing under tratment i will make sure she consults with a nutritionist. She is trying to keep her strength intact by stretching while sitting. And she will start seeing the physio on a regular basis. I think the disease requires a multi disciplinary approach.
mabes said:
As you have figured out, we are all so different in how cidp affects each of us and how we respond to the medications. It’s trial and error. There’s lots of options for your mom if she doesn’t respond to the first line of treatment. Journals have called it an art to treat cidp and in my case that would be true. I was diagnosed with gbs and went through 5 day loading dose. It wasn’t enough. I did, and still do, neurological tests on myself daily to gage function. I could measure my loss of function and called my neurologist. I was then diagnosed with cidp and had an additional 5 day loading dose followed by 12 weekly infusions of high dose methylprednisolone. We stopped all medications because of significant improvement and I did great for a couple of months and wishfully thought it was a sub-acute case of gbs. I had a setback and went back on weekly infusions of both and then tapered over time. It wasn’t a straight line but more of a roller coaster. I had hoped it would be a 3 year case of cidp but it wasn’t. Over the past 5 years, my condition has spanned from complete helplessness and pain to being able to run, and minimal pain. My current medication is a small dose of ivig, every 4 weeks and I am still weaning. This past year has been less of a rollercoaster. I have figured out some ways to stabilize. I can only speak for myself but the medicine alone was not enough to get me to this point. The first thing I did right was to keep moving, without exception. My digestive system was not functioning well and adding to my troubles. I finally gave in and changed my diet. I am off gluten, eat organic when possible, and stay away from high oxalate foods. I eat mega amounts of nutritious foods to get most of the vitamins and minerals. I use Now brand, calcium citrate, magnesium citrate, b’s and vitamin d. I get the potassium I need from bananas and honey dew. Exercise is critical to maintain all the body’s systems that are working well and heal the ones that are not. I have also found out that I was having setbacks from medications and got off them. Living with no prognosis used to bother me most of all. No one would say how long it would take to get better or even if I would get better. I didn’t know if all the work necessary to get well would have an impact. And if it did, how long it would last? In facing all the fears and doubts with a leap of faith, research, and making changes, I continue to get better everyday. The love and support of my sons and husband mean everything to me.
Your mom is lucky to have you. Best wishes to your family.
Hi mabes,
I love your attitude. I wish I could get to your point regarding the feelings about not fretting over the diagnosis/prognosis. This disorder takes so many different forms on a day-to-day basis that I don't know which way to turn! I was diagnosed with CIDP in October, 2013 after clinical exams, EMGs, and a CSF protein of 52, which is not really "high" but higher than normal. I've been on IVIG since November, although the first loading dose had to be delayed after I developed aseptic meningitis after the second dose. Now I receive two doses every 3 weeks (increased from 2 doses every 4 weeks) but I'm thinking it's a bit too much--I think I felt better overall with the two doses every 4 weeks, although the week prior to the due date my whole body ached more and I was very weak. I think the more frequent dosing is overtaxing the rest of my system. I have also had a genetics panel drawn and sent on March 14th because my father has had severe peripheral neuropathy that has decompensated into a condition with bilateral foot drop and clawed hands. Believe it or not, the plan is that I am the caretaker for HIM, yet now I've started to develop these symptoms. I do not have the best neurologist--getting any communication with her is like breaking into Fort Knox. I'm just hesitant to change doctors now since I'm receiving the IVIG without insurance issues--in this day and age, that's a big plus--changing physicians may give me more problems than it's worth.
I was really interested in hearing about your diet, especially avoiding the high oxalate foods. What are they? My GI system is totally screwed up by this disorder also, especially during IVIG weeks. Any information you can give on that would be appreciated. I'm also inspired by your belief about exercise. Before this disorder took hold I used to do spin biking 5-7 days/week. Now I can't even get myself on a recumbent bike. My legs are so weak I can't get up stairs unless I pull myself up. I keep working the best I can, but even my upper arms and shoulders are so tired sometimes I feel like I can't cook like I used to. This is a diagnosis of inconvenience for sure!
Thank you for your post. You've brightened my day a bit that I should be more positive about this!
AMA1956--Good Luck to you and your Mom. Hopefully she will respond very positively to the IVIG.
AMA1956 said:
Hi mabes
Thank u so much for your detailed reply. I am so glad you are doing well and figured out the right treatment regimen. She is currently getting her last dose of her second course of ivig. She has acknowledged a difference in the stiffness of her legs but the ivig gave her bad joint pain in her knees which has become a hindrance in her walk. Once she starts stablizing under tratment i will make sure she consults with a nutritionist. She is trying to keep her strength intact by stretching while sitting. And she will start seeing the physio on a regular basis. I think the disease requires a multi disciplinary approach.
mabes said:As you have figured out, we are all so different in how cidp affects each of us and how we respond to the medications. It's trial and error. There's lots of options for your mom if she doesn't respond to the first line of treatment. Journals have called it an art to treat cidp and in my case that would be true. I was diagnosed with gbs and went through 5 day loading dose. It wasn't enough. I did, and still do, neurological tests on myself daily to gage function. I could measure my loss of function and called my neurologist. I was then diagnosed with cidp and had an additional 5 day loading dose followed by 12 weekly infusions of high dose methylprednisolone. We stopped all medications because of significant improvement and I did great for a couple of months and wishfully thought it was a sub-acute case of gbs. I had a setback and went back on weekly infusions of both and then tapered over time. It wasn't a straight line but more of a roller coaster. I had hoped it would be a 3 year case of cidp but it wasn't. Over the past 5 years, my condition has spanned from complete helplessness and pain to being able to run, and minimal pain. My current medication is a small dose of ivig, every 4 weeks and I am still weaning. This past year has been less of a rollercoaster. I have figured out some ways to stabilize. I can only speak for myself but the medicine alone was not enough to get me to this point. The first thing I did right was to keep moving, without exception. My digestive system was not functioning well and adding to my troubles. I finally gave in and changed my diet. I am off gluten, eat organic when possible, and stay away from high oxalate foods. I eat mega amounts of nutritious foods to get most of the vitamins and minerals. I use Now brand, calcium citrate, magnesium citrate, b's and vitamin d. I get the potassium I need from bananas and honey dew. Exercise is critical to maintain all the body's systems that are working well and heal the ones that are not. I have also found out that I was having setbacks from medications and got off them. Living with no prognosis used to bother me most of all. No one would say how long it would take to get better or even if I would get better. I didn't know if all the work necessary to get well would have an impact. And if it did, how long it would last? In facing all the fears and doubts with a leap of faith, research, and making changes, I continue to get better everyday. The love and support of my sons and husband mean everything to me.
Your mom is lucky to have you. Best wishes to your family.
I had two treatments of IVIG and they did nothing to relieve the systems.My cure all for me was prednisone.I started out with 80 mg a day and now i`am at 5 mg a day.I have total remission.At one point I needed a walker to get around.I couldn`t drive,hell I couldn`t even hold a pen or fork to eat.It was bad.Now I play golf every day.ride my step bike and can even run. So for me.Its been a miracle and I am so grateful to having a kick ass Neurologist that knows his stuff.