CIDP or ???

It might be helpful to know the number of grams of IVIG you get every 3 months. Inially it seems like everyone gets a inital loading dose of about 2grams per kilogram of body weight and then you go on a maintenance doseage once you start showing improvement. Did the doctor just start you off at every 3 months. That seems to be a long time from what I have read here. I know sometimes it is a matter of finding the right doseage.
Good Luck,
Cindy

I have had cidp for 1year and 2months and it is not getting better either.. sorry that i have no help but it sux…

Jim,

In my personal opinion you need to get your Dr. to be more aggressive with your treatments. It doesn’t sound to me like they have stopped the progression/attack on the myelin and nerves. Usually IVIG is given at least every 4-6 weeks and sometimes less then that. It is my understanding that IVIG has a halflife of 21 days, so at 42 days it is gone from your body. If you are getting it every 90 days, your nerves are going to get attacked for 48 days before your next treatment, where the IVIG will be given and once again work to stop the attack.

I would ask about the reason for the long length between treatments. Also whether steroids or one of the immune suppresant drugs should be tried. I am no Dr. but I know your treatment so far sounds very passive.

I am so sorry your having these issues. A second opinion is never a bad idea either. They need to get the attack on the nerves suppressed/stopped asap. There are several types of CIDP, if you would like to read some more about the variants go here [COLOR=Blue]www.cidpusa.org/variants.html[/COLOR] (you will need to cut and paste that into your browser)

Take care,
Jerimy

[quote=Jim C]I just turned 64 and was diagnosed with CIDP almost a year ago. I’ve been treated with IVIG every three months. Nothing seems to have changed. My feet and lower legs are still numb and tingly. I am getting worse very slowly. From what I have read about CIDP, the very slow continued progression of my symptoms doesn’t seem to fit. :confused:
Has anyone else experienced a very slow but continual decline? Just to make things interesting I’m a Viet Nam and Desert Storm vet. I don’t know if it means anything, but during Desert Strom we all got the experimental Anthrax vaccine. I has some discomfort but not server pain. ;)[/quote]

Hello Jim,
I would guess that you need the IVIG’s more often, talk to your doctor about that and find out if you do better this way before you let yourself think it’s not working. I was never spaced out at every three months while I was progressive. I was put on a maintenence of one day, every other week.

Jim,

I absolutely agree with everything Jerimy said. I am 125lbs. and get 60gms of IVIG every 30 days. I also take an immunosupressant CellCept 1000mg 2xs a day. When I was not getting IVIG every 30 days I would start to lose my balance and muscle strength by about day 35.

A second opinion is always a good idea.

Pam K

Well then you need to talk to someone about that because only authorizing IVIG once every 3 months is RIDICULOUS! Especially if you need it because of the chemicals that you were exposed to while fighting in a war.

SHEESH!

You are not the 1st person that I’ve heard of saying that the military health system isn’t great. I used to think that our healthcare system would be MUCH better if it were regulated by the government, then everyone would have access to medical coverage, but since seeing how the government treats their veterans, I’m really re-thinking that position. (Geez, that was a LONG sentence, huh?)

Anyways…is there any way that you can appeal that medical decision? It’s the standard in CIDP to get at LEAST a 5 day loading dose of IVIG and then get it at least every 4 weeks. My daughter gets it twice a week – sometimes 3 times a week!

Jim
Is there any way you can appeal the decision of limited treatment?
Don’t take NO for an answer, request a variance. Ask your doctor if there is a patient advocate. I’ll pray for the decision, but you’ve got to fight for it.
Mary Ann

All,
I have noticed that the term half-life is occasionally misunderstood. I hope I can clarify it. In the case of IVIg, the half-life is 21 days, according to one of the doctors at the Symposium (I did not note who, sorry). That means at 21 days, half of the original load of antibodies is left. At 42 days, one-quarter of the original load is left (half of the load at 21 days). At 63 days, one-eighth of the original load remains, and so on.

Jim,
If I use IVIg, I need 0.5 g per kilogram of body weight once a week, and I still need an immunosuppressant. I agree with the others that you should try to get treatment more often, because by the end of the three months, you have very little of the initial load left. It seems to be a fairly rare person who can get IVIg once a quarter and do well. Godspeed in this.

MarkEns

Jim,

I am Active Duty Air Force on Tri-Care Remote. I am currently taking 35 grams of IVIG once a week. My neurologist just submitted a thorough explanation to Tri-Care of why he felt I needed the IVIG this often. Without question, they gave me an authorization to take the IVIG once a week for an entire year. If you can not get your Neuro to go to bat for you on this, I would try someone else. Good luck an let me know if you I can supply you with more info.

Brad

Hi, Jim.

I agree with the other comments about treatment. But reaction to treatment is as variable as the course of the disorder is. I’ve had CIDP for almost thirteen years, but wasn’t diagnosed until 2001. For four years I would relapse when I managed to take a cold or flu (about once a year), at which time IVIg stopped the attack. Between relapses, I tended to get fatigued fairly easily, but my other symptoms were essentially sensory. In the past two years, this has changed. I relapse every six to eight weeks for no reason, and IVIg no longer helps. I go into automatic remissions, but am left each time a little worse. Because I don’t tolerate medicines well (steroids and gabapentin make me really ill), my neuro is reluctant to put me on heavy medication, but may have to next time I see her.

At any rate, keep fighting (the frustration, of course, is having to fight not only the CIDP but your doctor!).

Deb

[COLOR=Blue]aan.com/professionals/practice/pdfs/gbs_guide_aan_mem.pdf
[/COLOR][COLOR=Blue][COLOR=Black](cut and paste in browser)[/COLOR][/COLOR]

[COLOR=Blue]
qjmed.oxfordjournals.org/cgi/content/full/95/11/717 [COLOR=Black]
(cut and paste in browser)

[/COLOR][/COLOR]This second link has some really good information and also links to other articles/papers that may help you prove your need. I didn’t have time to read through all of them but I hope something in there will be of help to you.

Jerimy

your welcome Jim, good luck tomorrow and let us know how it goes.

Jerimy

Hello guys!
I am from Kazakhstan. And I am 20 years old. Well my dad was diagnosed with GBS one year ago then it transmitted to CIDP. He has been using the prednisolone for half and year well there was breaks in betweens.
Now he is using it over 3-4 months. First he had it from the venuse now taking tablets.
Before using the prednisolone he`s illness was repeated. So we are very much afraid that after stopping using the medicine is it possible that he can be repeated? How dangerous is this?
Please can you guys help me about this if you have personal experience and also he is having temperature about a month now and doctors don`t know why it is like this?
Thank you

Jim C,

I haven’t posted in a while, but I have CIDP too, and agree with the advice given on your low dose and frequency of treatment.

You can tolerate triple the dose and frequency of IGIV. I went through this with high doses 5 days in row to shock start my body. The Drs. at Mayo Clinic and University of Michigan, agreed and ordered this treatment. It worked! You need more ROCKET FUEL! My kidneys are OK, but you need to watch EVERYTHING! My blood-sugar levels increase during the IVIG, and everything needs watching, as a precaution.

Even with the Military’s good intentions and treatment for you, you may consider getting some other opinions on your situation. I would go to see the Neuro/Drs. at MAYO CLINIC, at Jacksonville, FL, since you live there and see what they think and recommend. There may some others for you to see, if someone in our forum knows them and tells us.

Been in the hospital in Saginaw for a week to treat a severe infection in my left foot, that I’ve had for most of the year. The anti-biotics Zosyn and Merrem, were used and Zosyn, 4x a day for a month. the old Auto-immune system has been reduced because of the chemo-treatment req’d for the CIDP. A lot of pain and anger and frustration, at some of the care I get. You have to be your own Doctor, with CIDP, and it’s impact with other health issues. If not, you get passed over on the important factors, that it has in it’s effect on other problems.

Good Luck, Paul

Jerimy, haven’t talked to you in a while, hope things are OK.
I think BO and WOODY, are watching the BIG-GAME together now!!!

Paul I am happy to hear from you, call me sometime. I hope Bo kicked Woody in the jimmy after we got screwed out of playing them again.

Greeting Leylim we are glad you found us. If all he has been treated with is prednisolone and they have stopped using it, then I think I would be concerned.

What are their long term plans for him as far as medication, he has a chronic illness. Has he had IVIG? Is he still getting it? What about plasmapheresis?

The temperature thing in my non-doctor opinion seems like it could be an infection or his autonomic nervous system is whacked. I had this problem and my blood pressure and temperature were all over the place until my IVIG started working on my CIDP.

Ask lots of questions, you are part of the family here now so let us help you if we can. Take care and send my best to you Dad.

Jerimy

[quote=Leylim]Hello guys!
I am from Kazakhstan. And I am 20 years old. Well my dad was diagnosed with GBS one year ago then it transmitted to CIDP. He has been using the prednisolone for half and year well there was breaks in betweens.
Now he is using it over 3-4 months. First he had it from the venuse now taking tablets.
Before using the prednisolone he`s illness was repeated. So we are very much afraid that after stopping using the medicine is it possible that he can be repeated? How dangerous is this?
Please can you guys help me about this if you have personal experience and also he is having temperature about a month now and doctors don`t know why it is like this?
Thank you[/quote]

The very least I ever received ivig was once a month, and usually I received it every 2 weeks.