Giving Advice to Those Newly Diagnosed With Autoimmune Disease

[Jane DeLisle]

I’ve gotten myself into a little bit of trouble a couple of times when I’ve responded on various medical support group sites. I was kicked off patient.info, to this day I haven’t a clue what I said that violated what. From time to time I try to add the blanket disclaimer that I’m not a medical professional and anything I say should be reviewed and discussed with a doctor, but I frequently forget to say that. But I haven’t gotten into any worse trouble than that.

That said, hopefully medical support group sites emphasize upon signup that fellow members are not medical professionals but either patients, family or caregivers without an M.D. or PhD after their names but are dealing first hand with problems. And … the whole reason someone posts on a medical support group site is because their illness is NOT being adequately addressed by their doctors (if it was they wouldn’t be here in the first place). And, as the old saying goes, two heads are better than one, they hope to kindle a discussion that might yield possible answers they can then discuss with their doctors.

But I’ve found from time to time a few individuals that feel the medical support group sites should be for commiseration only. I disagree with that completely as I am answer driven, a problem solver by nature, and many others are too.

As for autoimmune diseases in general, my boxing gloves come off. My daughter has MG, went undiagnosed for 4 years, and I dove deep into the nature of autoimmune disease as we knew her immune system was trying to kill her but we didn’t know how and neither did any of the doctors. I generally try not to address the nitty-gritty specifics of a particular autoimmune disease, but I will always be saying the following, in the hope that it helps provide a different perspective and new discussion points for their doctors:

Modern medicine views the body as parts-is-parts. Diseases are described by what body part is affected. This view falls flat when it comes to autoimmune diseases. An autoimmune disease is a particular failure in some part of the autoimmune system, “Dysimmunia” or dysfunctional immune system if you may. What part, or how, will result in different symptoms, hence different recognized disease names. So instead, we all need to be viewing autoimmune disease as a “Spectrum” disease that manifests itself in different ways depending on how the immune system is messed up.

For instance, one cause of MG is auto-antibodies that attack the Nicotinic Actetylcholine Receptors on the muscle cells. Plasma antibody factory cells are programmed to produce one unique type of antibody, and the collection of these cells produce the suite of different antibodies that protect us from all sorts of pathogens. But along the way, programming gets messed up and some of these Plasma cells are programmed to produce auto-antibodies that attack specific proteins in our own body. Same Plasma cells, but different programming results in different immune diseases (Hashimoto’s, Celiac, etc.)

At this point of time, doctors don’t know what triggers this mis-programming, so medicines right now are geared to alter the general behavior of Plasma cells, or even interfere in certain ways how antibodies work. So in the grand scheme of things, there is a general path of treatment for autoimmune diseases: Prednisone -> DMARDs -> Biologics -> IVIg/Plasmapharesis -> (in the case of MG) Thymectomy.

But … there is the FDA. The FDA approves medicines for specific described diseases. This can be quite limiting to the many immunosuppressant medicines that might be able to help, but they require a doctor to prescribe it off-label, and many doctors refuse to do off-label. MG, as an example, frequently utilizes a number of medicines off-label if one was to delve into the particulars of FDA approval for those medicines, but MG experts have the knowledge and experience to confidently prescribe them off-label.

“If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck” isn’t good enough for undiagnosed autoimmune disease symptoms, and many people suffer from “malpractice from neglect” because doctors won’t even prescribe Prednisone at this point. Good rheumatologists and other specialists who have training in autoimmune diseases within their specialties have the experience and confidence to be more aggressive with treatment. I am a bit PTSD over this point.

Finally, I am also a member of Inspire.com, which is a medical support group site that consists of many communities of different illnesses and rare diseases. I haven’t been kicked off that site yet despite the volumes of “advice” I’ve given, and I have been amazed at the knowledge base of the members who have done an enormous amount of research in their own quests.