Why Immune Mediated conditions are so difficult to deal with

[Carolina]

I posted this elsewhere, but I do want to remember it, so I'm putting it here:

The reason that it is so hard to figure out what condition you have is that the the immune system is still very much a mystery to medical science.

My husband is a research immunologist, and he is the first to say that while we are still describing the system, we are light years from knowing how to fix anything, or correct any problem, or prevent any problem.

Most of the time we describe what system is affected by an immune mediated disorder. Skin, lungs, parasympathetic system, kidneys, etc. But really just like you can have more than one sort of cancer in an organ/system, it is likely that our immune mediated disorders are NOT specific to one organ only, but are more like each other than not. Probably very closely related, in fact.

It is very difficult to identify what disorder is going on.

AND the treatments for all immune mediated disorder are pretty much the same: Immune mediated disorders cause inflammation when your immune system attacks your own body. When you have an infection, and your immune system attacks the infection, it is the inflammation that causes the pain and redness, and heat. Inflammation is necessary to fight infections, but it is inflammation that does the damage in immune mediated conditions.

So in treating an immune mediated disorder, FIRST there is an effort to reduce the inflammation: this is done with drugs like NSAIDS, and also with Prednisone. But Prednisone carries many risks with long term use, tho' some people take a long term course of a fairly low dose of Prednisone. Usually however Prednisone is used to knock back the inflammation for a short time, and then other methods are employed longer term.

In addition to reducing the inflammation medications are used to knock back your immune system itself. These are in the category of either Plaquenil which does something, but doctors don't exactly KNOW what it does, to reduce the activity of your immune system.
The other medication to reduce your immune system is chemotherapy drugs.

There are two problems with using chemotherapy drugs to reduce the strength of your immune system so it does not attack your own body so fiercely.

The FIRST problem is that reducing your immune system so it won't attack your own body also reduces the ability of your immune system to attack outside invaders. You are possibly more likely to get sick from infections when you are on chemotherapy.

The SECOND problem is chemotherapy drugs is that they often have side effects that are unpleasant.

However, I know many people who take Plaquenil, chemotherapy, a continuous low dose of Prednisone, and also biologicals like Humira, and have very productive lives. However, they are not completely pain and symptom free.

Immune mediated conditions (autoimmune and immune deficiency) almost never 'go away'. They like to hang out together, and when you have one, you are more likely to develop another one. That doesn't always happen, but it does happen.

While you are waiting for a diagnosis (and some people have immune mediated conditions and NEVER test positive for them) there are many things you can do to help with the SUPER SYMPTOMS that almost all immune mediated conditions share.

http://thyroid.about.com/cs/newsinfo/l/blsymptom.htm

I am not trying to be discouraging at all. But so often we feel that our doctors don't understand how miserable we are, that we may have something very dangerous/fatal, and that causes us a great deal of pain and fear.

While it is possible that you have a doctor who misses the point, or doesn't care, most of the time I have found that we need to see very specialized doctors, preferably at a university research related medical center. The average doctor doesn't really understand most immune mediated conditions very well, and operates by often outdated text book definitions.

You need to see doctors who truly specialize in the immune system, either a Rheumatologist or an Immunologist.

This is time consuming and expensive. If you indeed have an immune mediated condition, you are going to become very well informed and you have to be your own best advocate. ALWAYS TAKE SOMEONE WITH YOU to appointments, someone who is on your side.

Ok, I've lectured long enough, and most no one will read this. but I've been doing this so long now, and I can feel and fear and pain and anxiety in people who are at the beginning. It is NO FUN.

We learn to cope, and live, and laugh and enjoy life. And we support each other.

Hugs, Elaine (aka Carolina)

[finallyadx]

I always read what you post Elaine  -  you are always so informative and I never find you discouraging.  You are a wealth of information, honest and true - sometimes we need to hear it from someone who has been on this path longer than others.

I am newly diagnosed in January of this year and find some days much more difficult and frustrating than others.  I have almost all of the symptoms on the checklist that is linked.  I get minimal relief some days from the plaquenil and other days I feel no relief at all. 

Although I am saddened that there are so many of us who struggle with autoimmune, I am always uplifted by the support, encouragement and information that the forum offers.

Thanks for the info.

Take care, sending positive thoughts and prayers.

[warmwaters]

Superb summary Caroline - thank you.

I had recently come to a conclusion about the doctors we need,  that is much like yours.  I was dealing with a new doctor for some back issues, and mentioned a course of treatment that my very good rheumy had tried because of the autoimmune issues that are a part of my back problems.  The doctor look startled, asked why I would be treated that way, and I found myself describing  the mechanism and research that supported that approach. She shook her head, and said she had never heard of that treatment approach. 

Ooops... how to get off to a good start with a new doctor. I should mention this was a relatively young doctor, fresh out of a very prestigious med school/residency program. To her credit, she did listen, but still... this is part of the key research on that particular autoimmune issue.

I don't know how many times I've been told that my health issues are not related to my autoimmune issues, though many of them didn't exist til I had the autoimmune issues.

Caroline - your contributions to the site are always thoughtful and helpful.