Relapsing from 5 days loading IVIG dose

At your age? What does that mean? Too old? Too young? Never heard of the age problem personally. Definitely not sure what that means!

For five years, I had IVIG two days in a row starting every other week and spreading it out to eventually every 8 weeks. I am trying to go without it totally under my doctor’s blessing.

However, he told me that if my symptoms begin to come back, to get back to him so that he can order the prescription of IVIG again.

By the way, I am 45, and my age has never been discussed with me.

Unless somebody else in this forum has better advice, I’d seek another doctor’s opinion.

Best of luck. CIDP can be so frustrating! Especially, in my opinion, being so blasted tired all the time! I’ll pray you get back to being UNSTOPPABLE!

dennis

Peteacher gave you some wonderful advice. I have never heard of an age thing either. Most doctors who know what they are doing will work with you until a proper dosage for each individual is found. Our doctor is wonderful and believes in ivig and getting it as often as you need it. PLEASE LOOK FOR ANOTHER DOCTOR. It took us awhile to find our doctor and when we did, he ordered weekly ivig until my daughter was back to baseline and then started to spread it out. HE KNOWS CIDP and that has helped tremendously. You need to find a doctor in your state who really knows cidp. Put out a cry on the forum and ask for suggestions or get on the internet and start googling. It is cases like your that get me worked up!

Theoretically speaking, the max that ivig can last for anyone is a month and a half. This is a basic concept. It only has a six week life at best. a 2-3 week half life. At best means in the best circumstances, that your body is not using it up faster. My 13y/o falls into that category, it sounds like you might too. Are you saying that YOU feel good for 6 weeks or is that a statement your doc made? If you feel good for 6 weeks, it is important to relalize that you have to stay ahead of the game. By the time you physically feel worse or tired, etc. the process had already started a week or so previously (demylienation) For ourselves, we did monthly treatments to stay ahead. Staying ahead is the only way to allow healing. If you wait till the absolute end and symptoms start, you erase any healing that may have started the 3-4 weeks prior. So you will make no gains, only stand still. You would need to sit down and figure out when you start feeling symptoms and make sure your treatment sarts 1-2 weeks prior. Your doc could be in a big shock if you figure out you need it every 2 weeks!!! Everyone is different and it will take a while to finesse. You have started the process, you already know 6 weeks is too long, the next progression would mandate monthly and see how it goes, then maybe every three weeks. Only time will tell. Another consideration, if you get to the 1-2 week need at a 2g/kg dose and still do not get results, you may have to explore other options such as ivig w/steroids or ivig w/pp or imunosuppressants or maybe even cytoxan. There are progressive protocols to follow. Each option is usally tried until the ideal one is found for you. Are you getting the standard 2 grams of medicine per each kilogram of weight? If you need help figuring out the dosage, let me know? Keep us posted and seriously consider a new doctor. If you really want to rattle him, you could mention that being younger you still have an opportunity to change this around because you still have a thymus gland (until age 50, then it strts shrinking to nothing) it is what regulates t-cell regulators. If you modulate w/ivig being younger gives you the best opportunity to encourage the t-cell regulators to do their job. While puberty is the optimum age, there still is a fighting chance before it starts to disappear more.

I used to go every three months but by the time I got my IVIG I could hardly move.

With the advise and encouragement from the wonderful people on this forum I went back to my doctor to discuss monthly IVIG.

I am doing much better having it every month.

By the way I am 44!

Go back to your doctor and ask about the age thing…does the doctor have information about why “at your age”!

Have a frank and open discussion and tell your doctor about this site and that many people are having IVIG monthly and you would like to try it.

If that doesn’t work then get another doctor.

Good luck,
Rhonda from Canada

hang in there rhonda… things will get better:)

I have been “doing” IVIG for 16 years 32 grams every 4 weeks. If I try to go without it I also “fall off the cliff” and can barely walk, etc. My 4 week interval keeps me basically symptom free. My Neuro does not think I am too old for this treatment. Oh, yes, I am 80 years old.

Well…your dr would be floored at my daughter’s IVIG schedule then.

She is a really different case, so keep that in mind. At 4 & 5 years old she was getting 20 grams of IVIG (4 grams per kg) 2-3 times a week. It totaled 200 grams a month. Then she was getting it once a week & we’ve gradually spaced them apart over the years. Now she’s still getting 20 grams (but has doubled in weight since she was first dx’d) every 3 weeks.

My advice would be to get to another dr. This dr doesn’t seem to know about CIDP…or maybe he does but he’s not up to date on treatments.

You should start off with a loading dose of 2 grams per kg. (Some dr’s prescribe multiple loading doses)

Then once you are at baseline, meaning you are no longer going down hill & have improved, the dr needs to figure out how much IVIG you need & how often. This can take quite awhile to figure out as every CIDP’er is different & treating CIDP is an art form.

Good luck,
Kelly

I think the doctor was implying that it was too expensive to treat him with IVIG since he is so young. We certainly had that kind of statement from hubby’s neuro. i.e.” You’re 60 yrs old and if you live to 80, this is a very expensive treatment. I’m not saying you aren’t worth it, but we need to find alternatives such as immunosuppressants.” We dug in our heels and he is still on IVIg every three weeks(knock on wood that we can keep going with it as it works). There is pressure on doctors to limit IVIG due to cost.
Laurel

I agree with the others. I would serious look for a second opinion. The day my test returned from my spinal I got a call from my Neuroligist. She scheduled my five day loading then my 28 day maintenance. I have my six month schedule planned and doing fairly well. At 21 days I see some changes but can hold out for 28. I told my Neuro that I get grumpy before and a 28 day cycle I know how you ladies feel. See if you can find a Doctor that listens.
GAT

Hi there. You need maintenance IVIG. Do you have someone to advocate for you? There should be an ombudsman to help you or a patient advocate. Any chance you can change docs? My daughter is 34 and has plasma exchange (PE) once every 3 weeks. She did not respond to IVIG, still cannot walk after 2 years, without Afo’s and a walker and that’s very difficult. She, too, lost the use of her hands and arms and for a while her diaphragm. The breathing problem came AFTER the IVIG, so she was given PE. When we left the hospital after 2 months we did not understand that the PE should be ongoing. She had several sessions of 5, then a few 3’s, one more 5 in 11/09 and back on 1 x 3 weeks. You need more help, I think you will continue to relapse. PLEASE LOOK FOR A OMBUDSMAN OR A PATIENT ADVOCATE. Promise! I hope someone is caring for you the way I have been for my daughter.

your doctor needs to consult with a doctor who speocializes in CIDP> tell him to call Dr Lewis in MI. lol he will tell him how much and how often. you can certainly get it more often than once every 6-8 weeks. shame on your neuro for not knowing this. he obviously doesnt have a clue about how to treat CIDP.

Florencia,
Typically (you will learn there is nothing typical about cidp, both from doctor knowledge to your symptoms) you would get a loading dose over 4-5 days, how come he did it in 3? At 90 grams total, that would tell me you weigh 99 ponds, is that right? If you do weigh 99 ponds, you did get the proper amount of ivig for a loading dose. If not, that would explain why you feel the way you do. BTW, did you feel any better after the ivig? Here is the formula to figure out how much ivig you should be getting. Take your weight in pounds, say 100lbs, divinde that by 2.2 (formula to convert your lb weight to kilograms the number you get is 45.45 ( so you could round up but mathematically following the rules anything under 50 you round down) so your weight in kilograms would be 46 kilograms. To figure out the amount of medicine for a loading dose (2grams) you multiply that number by 2. So a load for a 100# person would be 92 grams. 100/2.2=45.45 (46) 46 kilograms

46 kg x 2 =92 To figure a maint. dose out, you divide the total number in half, because a maint dose is half the amount of a load, so 92/2=46. If you would like to talk, you could private message me your phone number and I could call you.

BTW, once you get all this “crap” figured out, things will be smoother, I promise. The key is to find a doc that is knowledgeable and listens. Once you have these things in order, you can get home healthcare at your home and have treatments in the comforts of your home and still be able to be with family. If you are not confident in finding a doc where you live and insurance or situations at home allow, you may want to consider a trip to Mayo to get things sorted out quickly and on the road to recovery before too much time is wasted and things get worse.

Hi there, a quick note for you as am rushing the kids out to school!
If ivig is working for you as you indicate, then i would be seeking more regular treatment. Being your age, I thought they would want to keep you as well managed as poss. You have so many more years ahead etc!!!!!!
I too am your age and have been living with agressive CIDP for 3 years now. I am well managed, therefore lead a full life, care for my 3 young children, work 1 – 2 days a week and run 40km a week plus lots more etc, skiing, triathlons. To stay this way though i receive IVIG every 2 weeks (just tried 3 weekly but the weaknes and sensory loss started to creep in) and have had as much as IVIG twice a week! (Due to trial and error I also require immunos, and pulse methylpred) Everyone is diferent so tailoring treatment to the individual is a must. You need a doc that is prepared to get you to your optimum level of functioning.
You go girl and get what your body needs! There is light at the end of the tunnel!!!! Stay strong.

Kathy

Kathy!!! You are amazing! I don’t think I could walk 40km a week w/out cidp if my life depended on it! You are an inspiration. Nice to see you back, it has been a while.

I would DEFINITELY seek the opinion of another neurologist! Age has absolutely NOTHING to do with whether you should be receiving IVIG.

Treatment options vary, but if IVIG works for you then you need to work with your neuro to determine the correct maintenance schedule for your infusions. You want to avoid getting to be in such bad shape, as this simply undoes the healing from prior IVIG infusions.

CIDP certainly isn’t “a walk in the park”, but it is a manageable condition when treated with the proper schedule of IVIG therapy.

Personally, I’m 50 years old and have been receiving maintenance doses of IVIG every two weeks for the past decade.

Best of luck in your search for the proper treatment!

KHS730

a good cheap way to ‘interview other’ docs.
You just mite in the process ‘find’ the doc you both like and need.
Some neuros are skimpy w/IG infusions and then say …they don’t work! DUH? Others lay it on and it can/does work! Worth a try at least. Maybe some more good useful testing can be done? Never know.
Don’t give up on the concept or the treatment? Just question the dosage and/or the brand and quantity/quality of treatment.
Lots of good advice give by all before me. You tho? Don’t give up because there’s no seemingly real hope. There is!!!
Hang in there! It took me over a year to get diagnosed and treated, and it was one whopper of an effort! But I got it and I wouldn’t be mobile now were it not for that exhausting effort years ago.
Keep faith in yourself, how you do or don’t feel? And be persistent in asking intelligent questions about it all. Never ever accept NO for an answer? Don’t know is a a ‘start’ to dialogue as to how to find out the ‘not knows’ and go from there! I have faith in you, and I believe others here do as well. Go get ’em tiger! Hope always!

I am new to all this, but I can refer you to a website that I found when it was suggested I have IVIG. I don’t know how accurate it is, but it is a start and I am sure the many people on this site can verify if these statements are correct or not. Hope it helps.

“www.cidpusa.org/P/ivig.htm It is 20 facts about IVIG.

Fact #9 – “What is the frequency of the IVIG treatment given? “usually a dose of IVIg is 2 grams ker kilgram is divided into 5 aadoses and 400 mg/kg is infused daily for 5 days (for the first time only). Some patient can tolerate consecutive days of IVIg. It is recommended that young women take this on alternate days.

This is followed by a monthly infusion of IVIG at 400mg/kg.

Dr. Dalakas at NIH recommends IVIG at 2g/kg/month. for use i all autoimmune neurological disorders.

Fact #14-“What is the recommended dose of IVIg as compared to age”? “Children can tolerate a higher dose of IVIg and the whole 3g/Kg dose if IVIg has been given w/o side effects as a single infusion. Young adults up to 25 yr of age can tolerate 1g/kg as a single infusion. Up to age 50 only 400 mg/kg is recommended in one day. When dealing w/ above 70 yr old patients we recommend not to infuse more than 400 mg/kg in one week”.

NINDS is a more accurate site. As well, once you start searching you will see you can be lead to actual medical abstracts, the deeper you dig.