Need help With questions

Hi Kyle,

I’m sorry to read about your diagnosis, however, I’m glad you found your way to this forum as there are a lot of knowledgeable folks here.

I had GBS which is different as CIDP appear to require ongoing treatment.

Anyway, I wanted to welcome you to the forums. I’m sure you’ll receive responses from those who have CIDP or are parents/caregivers of CIDP patients.

Take care,

Tina

Kyle,

I have had CIDP for two years. It took six months for the diagnosis. I have only done IVIG. I told the doctor up front I did not want to do prednisone. I have seen too many side effects on other people. He has never suggested chemo and I think I would not be willing unless I was told that was the only solution.

By the time I started IVIG I could not raise my arms above my head, could walk slowly, could not do stairs, could not rise from a chair without assistance. I fell down several times and could not get up.

After my first dose, I improved a little but not as much as I had expected I would. I had thought I would be back to normal immediately!! The first dose was the load dose, my next two doses were half that amount and I made no improvement the next two months. So the doctor went back to the load dose every three weeks for the next 18 months. The energy did not start improving until about 5-6 months. I have made slow but steady improvement. I now look to everyone as if I have improved 100%. I am not really at 100%. I am not as strong as I was, I have to limit stairs, I tire quickly. But I am very functional. The doctor tells me he is amazed at my recovery. He also tells me that he can not tell me if I will continue to improve. I am now taking IVIG, still at the load dose, every four weeks. Tomorrow will be my second month at four week intervals instead of three. We tried to go to four weeks at the beginning of the summer but had to go back to every three weeks. I am having a week within the four week interval where I feel like I have flu symptoms. I have not figured that out yet.

In summation, you have to find the dose that is best for you and recovery is a very slow process. I hope to eliminate IVIG at some point. But, it has not been a one or two month process like I had orginally thought and hoped.

Good luck.
Donna M.

Hi Kyle
Sorry to hear about your dx of CIDP. My 20 year old son was dx with CIDP last DEc 2008. He is a collgege student at CMU we live near Grand Rapids. Are you from MIchigan? I see you went to U of M for dx.
My son has done IVIG which did not work and he has done high doses of prednisone and Plasma Pheresis which kick started him back going up hill. He is in a wheelchair now and has been in a chair since April of 2009. He has started walking short distances in Aug after he started the prednisone and plasma Pheresis. we see a neuro in Grand Rapids and also a neuro Dr Lewis in Detroit at Wayne State University. He is on the Board of this foundation and is an expert in this disease. Dr Lewis tells our GR Neuro what treatments he wwants done and has him order it.
Have you done IVIG or Plasma Pheresis? Ryan is getting ready to do chemo with the drug called cytoxin. The prednisone and plasma pheresis has done all its going to do and that just ins’t enough for Ryan he wants remission and wants to get as back to normal as he can.
Ryan comes to this site daily and reads. but he hasn’t posted anything yet. He is having problems with his account. it hasn”t been activiated yet. I told him he can use my login or email the foundation to activate his acct.
I am hoping he does it soon. we both read and we talk about everyone like we have known them for years. He thinks everyone who has had chemo already is very lucky and is jealous cuz he wants it so badly. But Ryan has to see a hemotologist first before he can start it because he has also been dx with hemolytic anemia (which is when his red blood cells get broke down or atacked and dont reproduce very fast) when it happens he turns jaundice. he stays that way for about 2 weeks.
well I hope you get better and that your treatments work. let me know what part of michigan you are from. there are a few others from michigan who are at this forum too. most are from the eastside of the state. which I grew up there so I am very familar with that area.
Glad you found this site.
Good luck and God Bless
Rhonda (Ryan’s Mom)
Ps you have to have a lot of patience with this disease. Its hard on everyone in the family. if you or your wife want to talk private message me and I will message you back with my phone number. I don’t know alot but I do know what its like to care for my son and the stress to a wheelchair and needing someone to do almost everything for him.

no way I grew up in Lapeer. what high school did you go to. I went to Lapeer East.

Hey Kyle – Welcome.

My 8 year old daughter has had CIDP since she was 4. I’ve read a lot about it.

I would suggest that you educate yourself about IVIG. You need to know what dosage of IVIG you are getting, what brand & what frequency the dr thinks is good for you.

The dosage will be in grams. Most loading doses go over a 4-5 day period. Most dr’s prescribe 2 grams per kg of weight. The math (I think) to figure out how much IVIG you should be getting is as follows:

You multiply your weight by 2.2 (that will tell you what your loading dose should be)

Then divide that answer by 4 or 5 (depending on how many days you will be infused) & that will give you what you should get daily.

After getting your loading dose(s) you need to figure out what your maintenance schedule is. Some dr’s try to start off with IVIG every 4 weeks while others take a more aggressive approach & start off with weekly or bi-weekly infusions (that is the approach I most agree with).

A maintenance dose is usually 1 gram per kg of weight. But honestly, we are finding that treating each CIDP’er is so different that some require more IVIG & others need less. It’s a bit of trial & error in the beginning to figure it out.

Where do you get your IVIG, at a hospital or at home?

I would suggest starting a binder to keep all of your medical records in. EVERY time you get a test done, get a copy of the results. EVERY time you have an infusion, you should take the sticker off the bottle with the lot & batch numbers. Record keeping is VERY important!

I would also suggest keeping a small calendar in your binder. You can write down your dr’s appointments & IVIG’s in it. Also write down any new symptoms. Take the binder with you to any dr’s appointment or to any infusion (if you go to an infusion center of hospital.)

Did you respond to the IVIG? Did you see improvement? Did you have any side effect from it?

I can’t think of any reason why your dr would be suggesting chemo at this point if you did respond to IVIG & you improved without too many side effects. Chemo is usually the last line of defense to treat CIDP.

The typical protocol is:

1) IVIG
2) IVIG + steroids
3) Plasmapheresis + IVIG and/or steroids
4) Chemotherapy drugs

There is a member on our site (Alice) who just underwent a stem cell transplant where she received extremely high doses of chemo. This treatment (possible cure?) is in the clinical trial phase. You can search for her posts to read up on her experience.

I know 1 other member has reached remission after taking chemo for cancer. There may be others too that I’m just forgetting about.

There is another member who hasn’t posted in awhile (Jerimy) who sees a dr out of U of M. Maybe you see the same dr.

I tell every new member that Google will be your new best friend. I would advise you to research, research, research! If there are medical terms you don’t understand, look them up. Read each medical report line by line. That’s what I did & it helped. If you try to take in too much at one time you will get overloaded with info, overwhelmed & frustrated. It’s easier to take it slowly & will really absorb what you are reading.

I also want to mention that CIDP is life changing. BUT you can still live your life. I read a study stating that around 50% of adults with CIDP go into remission. You just need to stay vigilant on finding the right treatment, at the right frequency & at the right dosage. And remember to REST, REST, REST!

Also make sure to register with the GBS/CIDP Foundation. They will send you some informational booklets.

Good luck,
Kelly

Hi Kyle ,

I have had CIDP for 9 years now . I know it can be quite frustrating and scary. I was 30 when I was diagnosed and I am also a mother and wife. One of the immediate things I felt I had to do is tell my family and friends what I had and print them out info so they could read it on paper and ask any questions they had. I dont know how old your kids are but just explain it as simple as possible. You will see as time goes by ….you will figure out what works best for your body and keeps symptoms at bay 🙂 Rest right now is imperative so make sure you get plenty. It wont always be as hard and as overwheming as it is right now .
Keep your chin up 🙂
Kimberly:D

Hang in there! I know this is all very confusing and frustrating. It took us 1 1/2 years to get a definitive diagnosis. I have been having IVIG treatments for over a year now. Some days are rough, but it is very true that the most important thing is rest. I feel very fortunate to have found this group because sometimes it is just nice to talk to someone who really does understand what you are going through because they have been there. Hang in there…we are all hear for you.

Thats ok if your a transplant, I am too over here on the west side of the state. I still have family that lives in Lapeer. My mom and my sister. wow what a small world.

Kyle,

I want to add to the above comment. I am in commission sales. After starting IVIG and improving some, I continued struggling to work the next four months and finish up several deals I had going. I then spent about three months working two days per week. The other days I worked on the computer and I took naps on those days. Usually the naps were from one to three hours. I could still sleep at night. Only after that did I really start showing steady improvement. I agree that rest is very, very important. I still have at least one day per month, I take a nap.

After getting better and knowing not all my muscles work, I tried exercising to strengthen the muscles that do work. Afterwards I did not have the energy to do other things. I have elected to do the things that I want to do and feel productive to get my exercise. I have recently planted a couple trees — dug the holes myself. I no longer feel guilty if I just sit down and do nothing. (After digging each hole I had to just sit for a while).

From falling down, could not lift a plate to put on the bottom shelf of cabinet to planting trees — please believe that you can get better.

Donna M

Kyle, Glad to hear you got the second opinon, your on the way to a better life. That being said, this disorder acts differently with everyone. You have to read, listen and then make your own decisions. I have responded well with PlasmaExchange, had adverse reactions with IVIG, relapsed with Cellcept, and am currently undergoing chemo! Wow, I just posted 15 years of CIDP treatments in 2 sentences. Seriously, I was diagnosed when my kids were 1 month, 2 and 4 years old, and have had 15 above average years from what I can read. Sure, I feel cheated from time to time, that’s what the bigest challange can be at times, especially when your weak and tired. You have to manage your energy and draw the line at times. Using Canadian crutches or braces goes a long way towards conservation of your energy.

E mail me if you desire. Your not alone..:o

Hi Kyle,

I too am fairly new to this disease, was dx around March of 09 and have
been receiving IVIG treatments once a month since. First at hopspital
then (because of insurance) now I receive them at Critical Care Systems
which is an infusion place. Before I was dx, I had alot of jumping in my
legs, my legs and arms were rapidly going numb and I had constant pain.
I was fatigued all the time, lost my balance alot, and actually fell a couple
of times at work. Since my treatments my strenght has gotten better, the
pain is almost 95% gone and my balance is better. I’m also not as fatigued
as I used to be. I never quit working (I’m a stubborn ol lady) but I’m fortunate enough to work at a school B/A program which allows me to be
home most of the day. AND I DO NAP EVERY CHANCE I GET!! All I can say
is thanks to Emily’s mom I did do alot of research on CIDP and learned so much. Hang in there Kyle and it was so nice talking with you.

Ms. Judy

[COLOR=”Navy”][FONT=”Book Antiqua”]Kyle, if you have been contributing to SS thru FICA taken from your paycheck, you may well qualify for SSDI.

SSI is supplemental security income for those who haven’t worked, or worked rarely. It is meagre to say the least.

If you’ve been having FICA taken from your pay, you may certainly go for SSDI, social security disability income, which will be the same amount you would receive if you had reached retirement age. That will continue until you do reach retirement age and at that time it will be regular SS income … nothing changes.

Of course, the longer you work, the more credits you build up toward monthly SS benefits.

P.S. here … and, of course, if you qualify for SSDI, you also qualify for the regular Medicare medical assistance. [/FONT][/COLOR]

Kyle
all you have to do to sign up for SSDI is go to your social security office and pick up a packet and fill it out and list all of your doctors and then they will be contacted by social security and the process takes aobut 5 months. You have to tell them that you are unable to work do to your illness. This illness is not temporary its chronic and there is no cure. if you get a denial letter in 5 months then get a lawyer who specializes in social security disability claims. they usually always denie the first time. At least that is what we were told. But my 20 year old son was approved thefirst time around. But a lot of people get denied the first time and then you need ot get a lawyer and they WILL get you approved.
Good luck if you decide to go that route. But you can’t be working when you apply you would have to quit or get fired first.

[QUOTE=KyleSIII]My name is Kyle. I found out 10/26 that i have cidp. It all started last January with tingling in my hands and feet by june i could hardly stand up. My family Dr said i probally had a pinched nerve i told him that he was wrong and i need to see a speacialist. After a few months i go to see a neurologist who can’t pin point anything, he just wanted me to take neurotine and pain drugs. I told him that i would seek a 2nd oppinion. So on october 26 i go to the University of Michigan hospital and the director tells me after a few tests that i cidp. He puts me on prednizone and orders ivig treatment wich i started the next weekend saturday and sunday. The Dr at UofM also said that i might have to have chemotheropy. Im 37 years young and the father of 4 kids. My family is suffering because i am so tired all the time, I have zero energy to do anything. I prey that the ivig treatments help.Can anybody tell me anything more about this disease. The only thing i know is what i’ve read on the net. Thank you all and God bless.[/QUOTE]
Hey Kyle, sorry to hear that you are joining this special group.. I to have cidp as of Oct 08 and the best advise is to rest..we understand that the mind says you can do it but the body says no…I had ivig treatments in hospital was in icu for 3 months and had to learn to walk and talk and breath on my own after reading some of the most incredible peoples stories here I am one of the fortunate ones that dosent need the aid of a cane or wheelchair….after 1 year of no meds I still cnat do the things I was able to do before this all hit….the stairs are still my enemy but I do them once a day and then have to rest…choose the things that are very important to do, save your self for thoose things.. you”ll feel your body get back at you if you over do it and then it takes more time to recover…yes its a nasty thing and we’d all like to scream some times but remember that it well get better and for the days you want to scream do it and then carry on…..live to the fullest and enjoy what you have….we are here for you and each other Brenda