I have many questions as I am new to learning about CIDP, as like most people I had never heard about this disease prior to my fiance being diagnosed. He has gone from walking with a cane to walking with a walkerto now not being able to walk at all. He has tried the large amount of steroids with no results and has had his first 5 days of IVIG and about to start his second treatment of IVIG on Sat. My question are how many treatments does it typically take to show a response to this treatment. My next question is does it matter how much they give you at a time as his neurologist wants him to have 2 grams in one day rather than spreading it out over a 5 day period like he did before. I not sure if this is because they found a rehab for him and want him out of the hospital to cut costs. I'm interested in hearing other people's journey's and thoughts. We have two beautiful boys who miss their daddy and want him home and better. He's a very hands on Dad and very active,so this as many of you know has left him broken, and have us questioning if he will ever walk again! Any feedback would be helpful and hearing other people's stories will help as well. I'm thankful I found this support group as we have felt alone throughout these last 4 months. Feeling hopeful and looking forward to hearing and reading other people's journey with CIDP.
Sarah
Hi there! So it is very typical for doctor's to prescribe a loading dose for an initial patient. I received my first treatment over five days and then adjusted for my maintenance doses from there. I am now at every five weeks for two days. It is different for everybody but I experienced noticeable results after three months and was walking again after about five.
My loading dose took three days then I receive 70 grams every two weeks. I am a very tall man so it’s based on size. After two months of treatments improvements really began to be noticeable. I still had to find a way to manage pain and spasms. But I have progressed where I use a cane when goin longer distances or standing in line… Fatigue and loss of feeling and temperature are the worst. The ivig has worked best for me.
For me personally, IVIG did not work. I had plasmapheresis treatments. I was able to start walking with a walker before i left rehab in july. then again in August. I did start regaining strength after my first set of 5 treatments. Unfortunately I ended up being chronic and have had 2 relapses now. My body does seem to react faster with fewer treatments now tho. I was having a single treatment each week. however, the week that I was gonna go 10 days between treatments, I ended up in the ER with blood clots in my lungs and legs. After that I needed multiple treatments in a row to get me back on track. This is a VERY frustrating thing to have. I was diagnosed in June. I have a 6 month old daughter that lives with my parents. so I definitely understand wanting to get back to normal!!
Ivig worked well for me and got me walking again be it slowly at first .eighteen months later I walk almost normally but still not able to walk for long distances, I am once again swimming and enjoying life I have my ivig one day every 3 wkly now .good look and prayers to you all .
I have battled CIDP for 15 years. IVig worked initially until my body rejected the treatment with a near fatal reaction back in 2000. I then went through multiple protocols of plasma exchange along with varying doses of prednisone for nearly 10 years. I had 9 years of on again, off again treatments with the plasmapheresis. In 2009 I went into a remission that lasted until late this past winter. I just started pulse steroid infusions once a week. I have my doubts if I can continue with them because of psychotic reactions. Here is the thing I have learned with CIDP. It is unpredictable and remissions can happen. I went on disability in 2003 but was able to return to work in 2006. I would urge you to go on Social Security Disability because you can go on and off it and at least have some income coming in. God bless. Jim
I had a vaccination. Then got Gbs turned into cidp. IVIG helped with being able to walk again.Calmare treatments for nerve pain and Cymbalta for depression and nerve related pain.Lorazapan for nerves.I have been on nerve blockers such as Gabapentin and lyrica.To be able to receive calmare treatments I have to stay off all nerve blockers. I use ice bags on my feet and hands which help with burning and other pains.I will pray for your complete healing. We are here for you.
You are not alone in feeling helpless and wanting answers from doctors and care-givers.
As a veteran CIDP patient (if there is such a thing) of 14+ years, the Nevada liason for the GBS-CIDP International Foundation and having a medical background, I can tell you that every case is different and personal. Patients react to IViG differently as well as to different brands (i.e Gamunex, Privigen) and combination medications. Usually dosage is a calculation based upon weight and other factors. Your husbands dosage seems kind of low at 2gm, but that's the doctors call. I have been on IViG Privigen for about 10 years now and currently receive it in my home every three weeks through a nursing agency that specializes in infusions. IViG can be the key to a quicker response if administered as quickly after diagnosis (which seems to take years sometimes) as possible in the right dosages. The GBS-CIDP Foundation has neurologists available for doctor-doctor consultations for free and informatioon about support groups in your area.
From experience I can also say that having the right neurologist is tantamount to receiving proper treatment. Again from experience, many doctors do not understand the complexities of CIDP because of its rarity and may prescribe medications to "try" something.
Best advice is to be your own advocate, do not take no for an answer, research as much as possible and talk to as many patients/advocates/organizations as possible, exercise and be positive. Positive thinking can make a big difference in recovery. I went the same route ending up in bed and in pain, but I am now functioning on my own and walking/driving.
Best of luck
Sarah, I’m a 79 y/o retired orthopaedic surgeon who was himself diagnosed with spinal stenosis in 2006 and operated but I got 3x worse so I sought neurologic consultation during my third post-op week because of increased pain and loss of motor power in my legs. It took them years to finally diagnosis my condition as CIDP. I got a second opinion at Vanderbilt University Medical Center where the Dx was confirmed. They started the loading dos of IVIg based on my weight so I got 80 gm over a three days stretch. After two months, I continued the treatments here in Knoxville still at the same dosage till 9 months when the dosage was reduced to 40gm over a two day period. Motor improvement was slow for me and tended to fade after three weeks so I have a BAD week before the next infusion. It has little to nothing for the pain and spasms. I used to walk 12 miles atleast once a week. Now I walk with a cane, drive very little, but I’m hosting a reunion for the entire so that gives me something to look forward. If I learned anything it’s this: the journey is long, uncertain, full of detours, with slow progress but if you always keep looking forward to something, anything whether it’s beer and burgers with the boys or having lunch with the girls, it doesn’t matter. When you are looking forward, tou are not feeling sorry for yourself.
Other advice has already been given: research, get second opinions if in doubt, ask, ask, ask!
Good luck to you and your fiance and family. God bless you and keep you. Bob
Thank you all I truly have been brought to tears reading this! I have hope again. I’m beginning to see that this won’t be forever. I will continue to advocate and research. I’m keeping positive and will pray and keep positive tomorrow as he gets his second dose of IVIG tomorrow. I can’t imagine what you all and my fiancé are going through and admire your strength. This site has been my most helpful support I’ve found! I thank you all and wish you all the best! Thank you from the bottom of my heart, my fiancé and I can sleep good tonight with positive thoughts. We truly appreciate all your encouraging words and stories, it’s been so helpful thank you once again!
Sarah
So happy to help & so glad to hear you are feeling better :) Your fiance is very lucky to have such a wonderful advocate in you!
My3boys29 said:
Thank you all I truly have been brought to tears reading this! I have hope again. I'm beginning to see that this won't be forever. I will continue to advocate and research. I'm keeping positive and will pray and keep positive tomorrow as he gets his second dose of IVIG tomorrow. I can't imagine what you all and my fiancé are going through and admire your strength. This site has been my most helpful support I've found! I thank you all and wish you all the best! Thank you from the bottom of my heart, my fiancé and I can sleep good tonight with positive thoughts. We truly appreciate all your encouraging words and stories, it's been so helpful thank you once again!
Sarah
For me it took until day 3 of my initial 5 day of IVIG before I started to notice a little bit of improvement. That seems to be normal as I get IVIG every six weeks (2 days) and I usually seem some kind of improvement on day three. Good luck to you and your fiancé. Keep the faith.
Hello! I have CIDP as well. I went into hospital totally paralyzed in January 2008. They tried plasmapheresis, which didn’t seem to help, so they tried IVIG. In April 2008 I was released from hospital to my parents care. I also had my husband and our 2 little boys but everyone chipped in. I was not walking at all yet but had a nurse come give me the IVIg. I was lucky enough to have my families support, as your fiancé is lucky to have yours. It’s hard and scary, not just for the patient, but their loved ones as well.
So, we had a home nurse who would come and infuse me with IVIg every 4 weeks and I went from wheelchair, to walker, to cane and walking by November 2008.
I still get IVIg. I have a nurse that comes to my house to infuse me every 6 weeks. I get each treatment over a 2 day period, 5-6 hours each day. 80 grams each day. That’s a lot!!
Ive been good though, it keeps me stable. I’m now running around around my 8 and 10 year olds 
Good luck to you and your fiancé. You’re not alone. There’s so much support here!
Hey!
So I have had a unique case but I got a 5 day treatment of IVIG and had no obvious improvements. I just started 40mg of prednisone/day so hopefully that helps! Seriously just keep a rock solid pma and do not except your husband will not be like this forever, I’m 23 was an athlete, THIS HAS BEEN HARD but it will never stop me:) you must seek out the positivites in the situation. I love the outdoor world/industry so, for instance in coping with this I want to pursue outdoor photography of nature and my athletic friends! Just because I cannot play sports, ski mountains etc. does not mean I will give up.
FYI I have been trying to exhaust every option whether it be eastern or western approaches. Seeing acupuncturists, herbalists, doctors etc.
YOU GUYS GOT THIS!
Also stay active. I got to the gym 4 days a week and work on stretching, lifting what I can etc. it’s vital for the mind to use your body coming from an active lifestyle. In times of aggression, let the tears come, use that fire within to push harder and never except you won’t come back!
Lots of advice here and you will notice many different stories. Mine was the 5 day loading dose (one full dose each day) and then that same dose once every 4 weeks since (now over 3 years) and that (apparently) keeps me stable.
How fast is the response? Depends on what exact type of peripheral neuropathy - because CIDP is often used as a generic name for a number of closely related conditions and as well what else might be also happening along with the CIDP. Just how far the damage to nerves has gone is also important because IVIg can a lot of damage problems but it can not replace lost nerves. And there are those where IVIg does not work so well - and that is a challenge. IVIg is regarded as the safest and generally most effective treatment - best if it works.
How to deal with the CIDP. I had a saying - climb the mountains while you still can. And that still applies though now I crawl up them.... Never give up and get on to do the best you can - even if you have to crawl to do it!
I get 2gm/kg every four weeks spread over 5 days because I have had kidney issues from Lupus. I am the poster child (so my doctor says) for IVIg. I was bed/wheelchair bound by the time I got diagnosed. I had been sick for six month before I received my first IVIg infusion. By the fourth month I could stand and take a couple of steps and by the fifth month I could walk. I slowly increased my walking to one mile inside on flat ground. I now walk only with a cane and am working on my strength and balance to get rid of it too. I have had insurance issues which caused relapses due to not getting my IVIg on time or I would already be working and walking by now! I have had better results from certain brands as well. Unfortunately the insurance company in my case chooses which brand I get. It will get better. Tell him to keep pressing on and don’t give up. He will find what works best for him.
The facts are around
It took me 2 months of monthly top-ups following an initial "soaking" of IVIG to show postive effects.I'll never forget the day I said to my wife,to her horror,that I felt able to walk up the stairs for the 1st time in around 9 months and I did it.
For me,45mgs every 4 weeks has kept me up and walking for the past 8 years.
All the best on your journey.
Hi Sarah,
I think I know the feelings, that you are struggling with. I am a wife to a husband diagnosed with CIDP. We are older, my husband is 66, I am 52. He got the diagnose in april 2015 and started treatment immediately. 400 mg a day, in a 5 day period.IVIG
He could not walk at all, we rented a wheel chair, and he had difficulties eating, dressing and undressing etc. For some time, we did not really spot any progress. So they offered more often treatment like 1 week at hospital, 3 weeks home, then again one week of treatment. In June progress started.....small progress. We were very happy. Then we had a set back, we don't know why. And in July real progress was seen. August he could travel with wheel chair assistance. September completely out of the wheelchair and is now walking with out help. Slowly and with difficulties, but he IS walking. And is 100% capable of doing everything on his own. Eating, dressing etc.
So from total frustration in the spring, we are now filled with hope on 100 % recovery. Though we know, that he will probably be on medicine life long. It gives him small side effects, like very sore lips, red skin in face and chest. But, we can live with that.
I have no opinion on the system in USA, about cash-thinking. We live in Denmark and medicine and hospitals etc is free. Thank God for that, so we don't have to fight insurance companies etc.
What I want to say to you. Keep the spirit, think positively, hope for the best. There is a cure - it takes long and seems hopeless sometimes. But it can work.
Best regards
Birgitte