Recently Diagnosed with CIDP

Hi Pat! Welcome to the site and I am so sorry to hear about your sister being so ill! Not an easy thing to go through being sick. I have not had any IVIG’s just yet but there are several in here that will be in here soon, that might be able to help you answer your questions. But I wish your sister well and hope she gets better soon.
Hugs

Hi Pat,
Yes, sometimes it can take awhile for the IVIg to have a noticable effect. First the attack needs to stop and then the body starts growing the nerves back, though sometimes I think this happens at the same time. In any case there is some debate on here whether the nerve pain means the nerves are growing back or not. I don’t recall having pain when I was completely paralyzed in the hospital, that came later after I got out. I’m not the person to talk to about dosages, there are others on here who are magic with the numbers, but getting enough IVIg is critical to stopping the progression. As for pain medication, I don’t take any for various reasons but most other people take neurontin, gabapenton, lyrica or other drugs specifically for nerve pain that seem to help a great deal.

It’s scary too when you are unable to care for yourself, please reassure her to not give up, that your nerves grow slowly and it takes awhile before they are well enough to see a difference.

Julie

Some people see immediate response to ivig as my son did, with in 24 hours. Others take a few loading doses to see a substantial difference. Others yet may need ivig in conjunction with a steroid such as prednisone or solumedrol, some also add cell cept or imuron to the equation. It is a treatment process that can take some time to figure out. Unfortunateley trial and error may be the only way to find your plan. The dose amount is 2g/kg. Search the threads regarding mathematical calculations for ivig, I posted a thread that is easy to follow. If you cannot find it, I will check later when I have more time and write it out for you. The space between the doses is also important. Some on the site get loading doses w/the other drugs weekly. My son gets loading doses monthly over 4 days, some go several months. The good news is there is medicine, help and people on the site that will help. Check back often and ask questions. Be patient and have faith. Things WILL work out. We are proof of that. At my 11 y/o’s worse, he could not walk hold anything lift his under wear up, bladder, bowel and respiratory issues. That was 23 months and 2 weeks ago. Today, NOW, he is outside plaqying with his friends and other than treatments and occasional need to recuperate from over playing, he is pretty normal. We will pray for your family and wish you well.
Dawn Kevies mom

To figure out if your sister is getting a loading dose or maintanence dose, here it the equation. Loading dose, 2g/kg. To figure out how many kg you are, you take your weight, lets say #100 / by 2.2 (kg to a pound) =45.45. So, you are 45 kg. Now you multiply that by 2, for 2grams of ivig / kg. So the ivig dosage for this weight for a loading dose of 2g/kg would be 45 x2 = 90 grams ivig total. Typically it is spread over 3-5 days. my son gets it over 4 days with a maximum flo rate of 39 to help with the reactions.
Once your sister is stabalized so to speak, meaning the active relapse has remmitted, the doc may consider starting a maint. plan which would be 1g/kg, so half of the amount which would be 45 grams total. Personally by the sounds of things, it would be quite some time before this should be considered.

Ivig has a full life of 42 days. How fast your body uses it up, or lets say how fast your body produces the bad auto antibodies that wipe out the good antibodies that the ivig supplies, determines your full life of the ivig. Everyone is different, hence the need to figure out the rate of frequency that treatments may be necessary.

This is just something I have been thinking of as of late. Keep in mind, just a mom’s thinking. I was wondering if plasma pheresis, which is another protocol for treatment should be done first to cleanse the body of the most possible autoantibodies should be done and then immediateley follow up with ivig. Therefore giving the ivig the cleanest slate to start the flood of antibodies, less competition with the autoantibodies. Again, just a mom theory. Good luck.
Dawn Kevies mom

I forgot about the pain issue. We are fortunate that the pain is somewhat manageable with aleve and tylenol. I can only offer you limited actual experience with those pain meds. however, my father in law and many on the site have great relief with lyrica, a pain medication specifically for nerve pain. Neurotnin also is used by many. Some have taken as much as 3600 mg. Another consideration is cymbalta. It aids with pain and is a depression/anti anxiety med. This issue too might take some experimentation to find out what works for one. About the pain itself. Kevin still gets zaps and zings in his legs, and arms. his ankles in particular have always been problomatic. Aleve helps with the ankle problem as it is an inflamation issue. The jabs and zings he works through and I suspect are fatigue related. Incidentally, at this point, I would assume the pain is continual demylienation in your sisters case as it sounds as thoughn the attack is continuing. Kevin experienced less and less pain once we got things under control. Once the attacks are stopped, the body or should I say nerve, heal about a mm a day, provided no additional attacks occur. I would have to reference my previous computations, but off the cuff, I think it was something like 14.27 or 37 inches a year. So it takes a long time assuming you are arresting the initial attack totally.
Dawn

Dawn,

I too reasoned that PE to remove bad antibodies followed by treatments to impact the immune system is the way to go (at least for me) so my neurologist and I chose that course.

So I am a test case for your theory of PE before IVIG and will try to log my response in the B-12 deficiency thread.

I had 5 PE’s in 7 days (August 7, 8, 11, 12, 13). 9/5 I return to the neurologist; the next step in the plan is for a “booster” PE followed by IVIG. I began seeing improvements (motor and sensory) within 7 days of the last PE.

***** Anyone reading this thread please realize what works/doesn’t work for one person may not hold true for others (caveat emptor) *****

Gary
CIDP symptoms began 3/08
Incomplete DX (B-12 deficiency) 5/08
Positive CIDP DX 8/08
Treatment begins 8/7/08

Gary, who is your doctor in Houston? I return to Houston next week (if Hurricane Gustav will cooperate) for another booster. I’m getting 60 gm if IVIg per day for two consecutive days, every three weeks. So far, there hasn’t been any improvement. During my last visit, Dr. Appel told me that he wanted to follow this course of treatment for three months before we try something else. At this point, we’re six weeks into it. Next week, I plan to begin talking with Dr. Appel about PE, and it may help if I can provide him the name of your doctor.

Congratulations on your improved condition. Let’s hope and pray that the improvement continues.

Rod, my new doc is Dr. Dennis Mosier at Baylor College of Medicine.

He is really easy to work with.

Dr. Laveck (sp?) is the Methodist PE Doctor. He is also really on top of my treatments.

I’ve heard good things about Dr. Appel as well.

How did y’all fair Gustov? We were certainly watching it closely. My house is 10 miles from the Surfside beach and at 21′ elevation above sea level. A cat 4 storm is supposed to cause us a lot of problems here.

Hope you faired well. It looks like it moved through quickly.

Gary

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.

Gary

Gary,
How is your progress going w/pp followed by ivig? I have often thought about it for those who have little relief from ivig alone. One thing that this cidp crud has brought to me, is God. I think and pray to him more than I ever did. I don’t even think why has he done this to us as a curse any more. In a strange we we have gained other inner stregnths from this plight. I can’t lie though, I would like to retain the inner stregnths and some day loose the cidp!!
I hope you and everyone have a great week ahead! Thanks for the encouraging words you often give to me and others!
Dawn Kevies mom

Dawn, Thank you for the encouragement.

I haven’t started the IVIG yet. I go see my neuro Friday (9/5/08). I think he will be astounded by the progress I’ve made on the PE alone.

However, I began to notice this weekend that the tingling and numbness in my fingers and hands is increasing. My motor function has not regressed though.

I will keep posting progress on the B-12 deficiency thread.

Anyone heard from Rod yet??? He was probably in Gustov’s path.

Gary

Pat,

I’m so sorry to hear of your sister’s passing. I hope you have had support during this time of sorrow. My heart is heavy after reading your post. I’m sure I’m not alone in saying that you are in my thoughts. Hold her memories close.

Dawn

Pat, My sympathies go out to you with the loss of your sister. I lost my sister at the age of 55, six years ago and still miss her as if it was yesterday.
Your sister is a treasured memory that your heart will hold forever.
Blessings and prayers
Shirley

Please accept my sympathies and prayers for you and your family.
Dawn Kevies mom

I am so sorry to hear that Pat, I’ve been wondering how your sister was doing. My sister-in-law has hemochromatosis, another autoimmune disease, so I know how hard that can be on your body. I appreciate the warning too about letting things slide, I do have a tendancy to do that but went in last week to get my liver enzymes tested. You have my sympathies Pat, I appreciate you coming back here to let us know what happened. I will keep you and your family in my thoughts.

Julie

Deepest sympathy Pat. I know you will miss your sister terribly. Please keep visiting here. We’re here to support you in any way we can.

Pat,
I am so sorry to hear about your sister. Always know that you are welcome here to vent or talk about your sister anytime. You will always be part of our family.

Hi Pat,
There are different brands of IVIG and sometimes you can be on a brand that will cause complications or things like pain. This never happened to me, I responded well, but complications usually happen when you are on one brand for awhile, then for unknown reasons your doctor switches to another. You can’t find out if it is the brand that causes pain or severe headaches unless your doctor believes this is the reason and tries another.