I see so many others every day with a bad knee, a bad hip, a bad ankle, etc. Now these cannot compare to CIDP, but they do hinder one from skiing, running, taking long walks… I know, because back in 1998 a tow truck pulled out right in front of me (he had a stop sign), & I broke my left knee. It never did heal right, I always had shooting pains going up my leg & it was very weak. So at 45 I was already getting used to limited mobility. Look around you, so many are suffering with various ailments, some you cannot see…
I am just trying to make you guys feel better. Of course CIDP sucks, I should know, as I probably had one of the worst cases this forum has ever seen. But trust me, there are much worse illnesses to have. Lori, have you considered arresting your CIDP with cytoxan infusions like I did? Cheap & usually only 6 monthly infusions are needed…
I think many posting here are missing a very important point: the level of severity of various people’s CIDP. Also, the fact that some CIDP patients respond very well to IVIG & do lead pretty much normal lives, but then there are those who are refractory to IVIG, PE & even solumedrol (which I found out the hard way that being on steroids for any length of time has to be much worse than chemo for a short time.)
Emily’s mom… I agree with you wholeheartedly, if Emily is doing well on IVIG & living a normal life, then why change things? And ultimately, somewhere down the road she can make that call if she gets to the end of her rope getting monthly IVIG. I raised a son who was born with spina bifida & is now 28. He walked minimally with AFOs & lofstrand crutches when he was young, but has mostly gone to a wheelchair full-time now. If there had been a treatment, any treatment, IVIG, chemo, that would have made his life more manageable, I would have gone for it. But there was nothing.
SurvivorX2… First off, your treatments have been too sporadic for you to judge what to choose at this point. If you have CIDP you should be on regular infusions, did the IVIG bring you back to your old self? Why was the treatment changed to steroids, & why did the doctor reduce the dosage so fast? Did the steroids at full strength bring you back to normal? I can understand why you would say you would want to try chemo, but first I think you need a new doctor!!
I can understand the teacher’s decision & respect it. If she is has CIDP & is able to work teaching (which I found to be a very physically demanding profession myself), then the IVIG must be working well for her. People can get used to a once a month infusion if the rest of their lives is normal. Or some are willing to put up with some residuals for the “known” rather than trying that which is unproven. I can understand that, not sure what I would have done if on IVIG I were still playing tennis, skiing, taking long walks, etc.
This has been an excellent discussion with posts contributed by so many. Not criticizing one another, no one being judgemental, etc. truly some excellent dialogue going on here. I can only hope that within a short period of time we will know much more about this protocol…
I don’t think it is so much that the neuros are guessing on treatments; after all, any neuro who has a patient recently dx with CIDP can look in his textbook to see the first line of treatments. I think the problem lies more in that each one of us responds to the current treatments differently. I deteriorated so rapidly at the beginning of my illness & became so disabled from it, that I was originally dx with GBS. But when I didn’t respond to 5 plasma pheresis treatments, then 5 IVIGs, Mayo changed my dx from GBS to CIDP. Then solumedrol infusions were added to my already twice weekly IVIG infusions. I was still not even maintaining what little strength I had.
Mayo came to the conclusion that I had one of the most severe cases of CIDP they had ever seen & that it was the progressive form. I was told by a team of 6 neurologists in July of 2002 that I was terminal. It took an extreme treatment of 9 months of chemo infusions at the Uof MN to stop the progression of my illness. I am not cured, as I still have residuals, but I am certainly much better than those days of a power chair & no use of my hands. I have lived a fairly normal life, since the fall of 2004, minus the tennis & downhill skiing. We are just all so different, I almost feel sorry for anyone doctor trying to treat CIDP patients…
I understand you are starting IVIG.
Unfortuneately everyone is different. Some folk have immediate response and other it may take 3mo, 5mo or even longer to get things turned around.
Most Doctors start with a basic protocol and do a trial period of IVIG once a month and then depending on how you adjust to it, the doctor may change the treatment spacing or adjust the amount of Medicine.
I started in January and have been doing it every 28 days. Before I started, I was using a cane and was pretty immobilized. After first treatment, within 3 days, I could move my feet much better and two months later was walking very well.170 grams. Now I can run. but have alot of pains left over.
They take your body weight and divide by 2.2 then double that answer.
This is a load dose of 2 gm/kg. So far I am going to get a full 170grams til
at least July. then I will be reassesed.
Good Luck Lori. and remember to drink alot of water starting the day before your treatment. I do benadryl 1 hr before the infusion starts to help prevent reaction. You need to ask you doctor if that is ok for you.
Let us know how it goes for you.–tim–
by the way Rod, good luck on your treatments. I’ll pray for the PE and IVIG to work, but if not that you’ll find something quickly that does.
I’ll try to answer the way I see it for me. I was basically just on IVIG’s, from 1999 to 2003, although methotrexate and imuran were added for a short period. My doctor wanted me to stay on just IVIG’s and I had faith in him, so that’s what I did. The first two years were my roughest with falls that caused me to be black and blue from ankle to chest, feet turning sideways, broken bones and sprained ankles. After the second year, my falls stopped and never returned. Any fall now would be carelessness or misjudgements. I have been in a remission for five years now and will not need treatments unless I show signs progression/relapsing has returned. When I was receiving the IVIG’s, I always felt the same, if worse, just a little bit, but always the same. If view of the way I reacted to IVIG’s, don’t you think that my remission showed that it works!!!
Would it at least be possible for her to get a 5 day infusion of IVIG? I know that after a certain length of time that IVIG does nothing but stop the progression, but because of her slow onset it could be possible for her to have CIDP. Have they even considered that? Is she at least not getting any worse?
Having said that, if it is only GBS & not CIDP, then time will have to be the treatment. This illness requires a lot of patience, unlike so many other illnesses. Wishing your mom a complete recovery.
I have often wondered many of the same things as you do. I have been reading this forum for 4 1/2 years now daily, & have read of people who said they had very mild cases of GBS because they were dx so quickly & given IVIG by their neuros. Others have said that they had such mild cases that they were told they did not need any IVIG or PP, & they turned out just fine. Others have had severe cases in spite of receiving the standard treatments right away, you get the idea. I guess I have read every scenario possible.
IVIG has only been around 20 years or so, & most people with GBS made compete recoveries before then, so are some just going to have less severe cases to begin with? It doesn’t even appear to have anything to do with age or your previous state of health. I think the severity of GBS & CIDP are predetermined at the outset, just as there might be a predisposition to these illnesses to begin with. Just a thought, but I am certainly not recommending not giving IVIG or PP to someone who has been dx with either.