Interlukin 1 What??????? HELP!

Relax, Death is not imminent.

Il-1, macrophages, interferon, are all terms associated with the immune system. Rather than me bore you with my cumbersome details, do a little digging and find this stuff. It will help you out a lot. Just google immune system. I just poked around a little and found a 2001 college class posted online. It wasn’t too bad, I mean in the technical way. Or read the definitions in wikipedia and then read a couple of articles and try to put them in context.

cIDP is a disease where the immune system mistakenly attacks part of the nerves and causes the nerve to dysfunction.

I have always wondered what kind of Dr. should be treating us. On one hand the damage is done TO the nerves, so a neurologist would have expertise. On the other hand, the immune system (a blood component) is DOING the damage, so a blood Dr.(rheumatologist) might have the expertise. NObody has ever really given a clear answer.

The solution to our dilemna is going to come from someone who understands why our immune system does us wrong and how we can tell it to stop doing it to us. But anyway, read up on your immune system and these answers will become second nature to you.

Take care

One of the things you will soon learn about CIDP is the S L O W N E S S of everything. It seems like it takes forever to get 1. a diagnosis, then 2. a successful treatment regimen, then 3. some measure of recovery, then 4, a way to learn to live with it.

It just seems like everything takes so long.

I mean, you squirt some afrin up your nose and it opens up. Boom. right?

The thing with CIDP and other autoimmune diseases is that there are just so many bad cells floating around that can cause damage. If you did good research, you ran across T-cells, and B-cells. Those guys are the “cops” of the body. they run around and look for “bad guys” The “bad guys” are viruses and things like that. They recognize them by parts that stick out on the sides of the cell wall, kind of an “ID card” So the B and T cells check the ID cards of all of the cells in the body. If they “check out OK”, they leave them alone. If the cells present themselves as foreign, or invaders, the T and B cells, destroy them.

Then they make a judgement. They look around to see how many other “bad guys” there are. If there are a lot of bad guys, the order goes out to replicate Cells to destroy this type of cell. Normally this functions pretty good, and your body routinely kills off disease after disease with no problem.

With CIDP, the T or B cells recognoze the Myelin that surrounds the nerve axon as foreign and needing destroying. Since there is a lot of it in the body, the order goes out to replicate, replicate. replicate. More gets destroyed, and you have problems.

NOW… Back to the slowness. There is always some level of screwed up T-cells floating around that you never get killed off, and there are so many of them in the beginning that it takes the body a while to get the most of them, and then after the T cells get knocked off, it takes the body some time to recover.

WOW!! what a story.

Hi,
The treatments your doc has been gining you ARE used, so it is not like you wasted time. I would have to wonder WHY ivig was not used sooner. For all you know, ivig may be all you need and has no lasting side affects like prednisone. Remicade too has SERIOUS sideaffects. We have a family member that did not fare well while on it for arthritis. Being that your sed rate is up and you see a rheum., it is probably likely that he would prescribe remicade. I would suggest loading doses of ivig for a few months to see where it gets you. If you have no luck with it, then of course you may have to refer to immunosuppressants. About the ivig sub Q, just my uneducated opinion, but if you react to ivig fairly well, I would do a regular infussion at least in the begining. It goes directly into the blood, unlike sub q where it is absorbed by the body. Depending on your weight, the amount you get for a loading dose could be quite substantial to deliver sub Q. Insist to give ivig a fair chance while weaning of prednisone. As a matter of fact, some people actually have weakness as a side affect of prednisone.

Regarding the list of diseases you have, unfortunately, once you have one, you are likely to get others. About the ctd, I have that, my doc said it is a pre-cursor to lupus, who knows? Anyway a friend of m ine has it seriously, her doc presribed plaquinil, it is a anti-malaria drug, and she is doing remarkably well. Maybe that could be an option for you in conjunction w/ivig. Remember, these are just thoughts and ideas, so take them with a grain of salt, or less!
Good luck,
Dawn Kevies mom

Hey,

Heading in the right direction, IVIg is an infusion of Immunogobulin(sp?) of the g type. It is a T-cell, not a B-cell, but it is part of the immune system. You are on the right track.

CIDP does not have a test that positively indicates CIDP. It is kind of a diagnosis by symptoms, response to treatment and by elimination. I mean, If it isn’t this and this and this. It looks like this and this, but it responds to this but not that. Therefore, I think it is CIDP.

In some patients the symptoms are big and easier to read. In others they are more subtle and much more difficult to diagnose. Since the incidence rate is so low, the disease is rare, and it is so hard to diagnose, most neuro’s either don’t see it, or can’t treat it. Usually patients are referred to larger hospital systems or University Research Centers where they see the unusual stuff more often.

I know that none of that is particularly comforting, but it is what it is. That is part of the problem we have to deal with. First the disease is rough, and then it is hard to recognize and treat. It makes most of us become more knowledgeable due to necessity.

Good luck friend