Reply To: General CIDP – IVIG Poll
Mark Robichek – I came on today to update people in this forum because I have hope to offer. This past year has been an unbelievable nightmare and I know many people here are living through it themselves. I am a caretaker of a CIDP patient. My friend Jeff is now 70 and was diagnosed with CIDP last January 2019 following successful hip replacement surgery in Fall 2018 and back surgery to treat pain and walking issues due to a compressed nerve in December 2018. He is a general contractor and has been an active athlete and biker all of his life. He lives in Gainesville, FL. When he didn’t recover as expected from the back surgery after more than 6 weeks his neurosurgeon realized something else possibly serious was going on and immediately made an appointment for him with a colleague of his at The University of Florida Shands Teaching Hospital and Medical Center’s Neurology Department. He was seen the next day by Dr. James Paul Wymer who has a background in ALS and is in charge of diagnostics and creation of treatment plans for hard to diagnose neurological diseases. He and his team spent a few hours examining Jeff, testing him, and discussing his symptoms.They scheduled him for blood work and a spinal tap. It took a couple of weeks to get the results of all the testing back but when it came Dr. Wymer immediately started him on IVIg hoping that if he responded it would help narrow the diagnosis to CIDP which he suspected. He needed to rule out some other things like ALS and a response to IVIg would indicate that his diagnosis was probably correct. (This is a very simplistic synopsis of a complicated process).
Jeff began IVIg infusions in January 2019 and by late April 2019 he was essentially a quadriplegic. He had no use of his legs and very slight use of his arms. He had some hand movement but no strength. He was confined to a wheelchair which he didn’t have the strength to propel and had to be lifted from bed to wheelchair to chair and back to use the restroom. We bought a used Hoyer lift but we still had nobody there to operate it. He was bathed and dressed by others, he was still able to feed himself but silverware became problematic. For 3 months he had IVIg 4 days in a row once a month with no improvement and more deterioration. He has a Humana Medicare policy but it provided little to no home health care assistance and none of the services provided were appropriate or useful for a CIDP patient. Friends/volunteers took care of him and he could afford a small amount of private pay assistance. He was on the verge of going into a nursing home only because it was a Humana time limited benefit available. I filled out emergency Medicaid applications, met with social workers and tried to learn about what he needed to do to live and where and how to find it. That’s when I noticed a very slight almost imperceptible change. Whenever he tried to move in bed which he could barely do he would scream loudly – not in pain but with the exertion it took to simply try to move. I noticed one night that he moved but there was not as much screaming meaning not as much exertion? I told the doctor who was feeling very disappointed the IVIg didn’t appear to be doing anything and fearing we were looking at ALS. He decided to introduce prednisone in a pretty large dose. When he didthe symptoms didn’t get worse during the next couple of weeks. Jeff wasn’t getting better but at least he wasn’t getting worse. Within a few weeks,he was clearly beginning to get a bit of strength back. He could hold his own PowerAde bottle which was huge. Meanwhile we knew the infusions were about $18,000 per month and since he didn’t have the money to pay them he was sending them $100 per month hoping they would accept it and continue to provide it which they did. One day he received a call from the pharmacy his doctor was using that his IVIg wasn’t available anymore but they would try to find something similar and they did.I think these changes are not uncommon but it’s important that the doctor knows it and is certain the new provider is offering the same quality product. After about 6 months he received a call from the pharmacy that he would not be charged for it anymore at least for now. We don’t know how or why that happened but it was another miracle on top of him starting to get better.
In June he decided he would drive to Michigan from Florida to get to our cabin. Nobody wanted him to do it but he was well enough to use his walker, the doctor had cleared him to drive, and he has been working out starting with lifting cans before moving to the smallest weights in his set. He left the dog home because he couldn’t walk her. But he did stop for gas a few times and actually checked into a hotel for a night. He drove 2 12 hour days in a row and arrived all in one piece. My brother and I found an old antique porch lift on Craig’s list for $400 (very rusty) and we used it in lieu of the stairs to get him up and down. His determination that this will not conquer him is mighty and I think it helps him keep up the fight. Attitude is important. He is a very stubborn person and it works for him.
This is December. He has been back at work on the construction sites for several months and every day he is able to do a few more things. He lifts weights at home and goes to the gym almost every day. He drives and walks without a walker. The wheel chair is parked and he is not using a cane at this point preferring to hold onto things as he goes. He still has a handicapped parking sticker and has learned to order groceries from the local Publix online and have them delivered. The county picks up his trash at the door so he doesn’t have to take it out. An independent person, he has hated being at the mercy of other people’s schedules and needing their help. But is extremely grateful to those friends who got him through the year. One of his friends has a restaurant and suffers from a serious autoimmune disease himself. Every week he personally brought dinner over and sat with Jeff and whoever else was there and shared a meal and some social time. Jeff is doing monthly infusions 2 days back to back having tapered down from 4 slowly. He is also tapering off the prednisone. The doctor makes all those decisions. The same infusion nurse has come to the house since he started which has made it more comfortable.
He hasn’t spent much time on this website or in the forums but I have. Without the knowledge and sharing and caring of people like Jim and a GB patient in Florida where I live who I met through this site I don’t know how we would have mentally or physically survived any of it. The caretakers have a set of issues of their own and my connection here helped me understand that. People ask me now “is Jeff cured”? The doctors says “nobody knows” – it may come back and it may not – there is no way to know when or why. He says “now that we know the science of it we are learning the art of it”.
I have several points to make to those of you who are patients but not yet diagnosed or who are patients not getting a good result from your treatment or who are caretakers along on the journey.
– the more you learn about this the less daunting it becomes. There are doctors who can help you and resources to help you live. All those things are available from reading and participating in this forum.
– try not to give up hope or put a time frame on when you think you should be at a certain place in treatment or recovery. My sister’s entire church has kept him on their prayer list for a year and one of the members said at one point “remember, things do not happen in our time they happen in God’s time”….that tended to settle Jeff down a little even though he isn’t really a church guy himself.
– if your friend or family member found themselves in this situation you would want to help them because it would make you feel better so please ask for help and let those who offer do whatever they can. One of Jeff’s hardest things was to take help from others but when the work is spread around it makes it easier for everyone. One of his close friends offered to pay the house payment when things got really tough and one month he accepted the help because he had to. The friend later told me how happy he was to be able to do something during such a terrible time.
– everything is important but in retrospect I think the most important thing for Jeff was finding a doctor who knows the disease and the early diagnosis and treatment he received. Large, well funded, medical, research and teaching hospitals and medical centers seem to be where doctors with experience in rare things like this are located. I think it is because they gravitate to or are recruited by institutions who are on a mission to be a world known medical mecca. Most of these doctors are scientists too and they want to immerse themselves in their research and the treatment of their patients. That takes funding. Everyone can’t go to The Mayo Clinic but most states have some kind of medical research facility usually attached to a university. I encourage anyone who can to get to a place where an medical team experienced with CIDP is available. If you don’t know how to do that find a friend who is computer savvy and wants to help and put them in charge of it.
– for caretakers I would say you are no good to anyone if you are dead and more than 30 percent of older caretakers do not outlive their patients. Ask for help. Prioritize and let some things go. Try to find an hour each day with your patient to do something enjoyable – read, listen to music, talk, watch tv, have a visitor. Find another hour each day when you are alone and not asleep. Walk outside and get fresh air everyday. Get church or family members to come by and spell you so you can get time away from the house or in the house without being engaged in patient care.
Jeff has been told there is no known cure as yet for CIDP. He knows it is chronic meaning it comes back. He knows there are a few other treatments if the one that is currently working stops doing so which is not uncommon. But as his doctor says nobody really knows if, when, where or how. We have everything in place now so if/when it comes again we will not be so totally at the mercy of it. He has sold everything he once had except his house in order to qualify for medicaid if and when he needs to. He has a collection of ‘things’ – some described here – including a sit to stand chair donated by a friend whose late brother had it. I found big huge tread tires for his walker on Amazon so he could get around a construction site without falling. You can’t believe how many people with walkers come over and ask where they can get them. For now things are in storage. We know who to call and how to have tracks installed on the ceiling of the house to move him around in a lift. We found a private pay home health care worker who is standing by in case he needs her again. We did everything in the past year on a need to have emergency basis but now we are as prepared as we can be for the next round.
I never thought I would be happy to have a diagnosis of CIDP for him but when the other choice was ALS I was relieved to get it. I’m told ALS has a better prognosis now than it once did so those scientists are at work and that gives me hope too. Now that a year has gone by I see light everyday he can be in this remission, I have hope it will last forever, and I feel prepared that if, need be, we will live to fight another day.
Many thanks to everyone who helped us and continue to help us and themselves as well. I will stay with this group for as long as I can no matter how it goes with Jeff. I will keep you all up to date in hopes there will be something in his story that will help give you an idea for your own situation. Bless each and every one of you who have CIDP that you may find good things on the road ahead that take you to a better place. That is my prayer.