Hi Amykcpa,

windyshores has given good insights!

My general insight:
I will never be completely certain about any course of action with my autoimmune disease/s. That is hard to accept. Over the course of the last 10 years, I have tried to accept that I can only try to make the best decision given the information available to me and my doctor at the time.

Be sure to get a doctor whom you respect and trust; it might take a few tries. My gal rheumy does not ooze compassion and sympathy, but she is knows her stuff. I've been with her for 10 years. My primary care doctor recommended her. We are near Philly. Once a patient flew here from Montana (!) to have an appointment with her.

About starting medications:
It sounds from your messages that you have begun your research- good for you!
All medications have risks-- and benefits, too!
By reaching out here and collecting information, you actually are doing your risk-benefit analysis. You do still need your doctor's input.

Mix the doctor's input with your research, shake it up, be confused for awhile, and hopefully you will come up with a decision-- based on your risk-benefit analysis-- that you can live with/ be satisfied with.

Sometimes, I wish I had started medication sooner; sometimes I am glad that I waited...Hard to know, really. I had reached the point of having a lot of difficulty with normal, daily functioning. It became obvious that I had to do something.

Quality of life counts in the risk-benefit analysis, too.

But, having taken charge of the risk-benefit analysis myself, I am content at least to know that I made a reasonable decision at the time, however it turns out. I started plaquenil, then dMards 10 years ago and have progressed through a lot more meds.

For your own peace of mind, I urge you to make your own risk-benefit analysis before starting any med. Of course, you must give significant weight to your doctor's input.

About a diagnosis:
My opthamologist (medical eye doctor, sorry about spellign)-- who treats patients with autoimmune diseases-- he told me NOT to worry about a specific diagnosis, just get treatment.

Apparently, there have been really big strides in the study of immune diseases in the last 30-40 years-- since the HIV research started in the 1980s. While some things about the immune diseases have become clearer, other things are still not so clear. It's like the pieces of the research haven't all fallen into place yet. But it's better than it was. It has been hard for me to accept the limitations of the science. I joke that I am on the outer edges of medical knowledge...

Scleroderma- The testing for Scl70 is imperfect. Wait to see what the rheumy says about it, which might be easier said than done. I tested positive 3 times, then I got another, expensive version of the test done, and it came back negative. Both my rheumy and my dermatologist agreed that, based on that expensive test, I probably do not have and will not get scleroderma.

Internal organ damage-
Wow, this has been a worry for me, too! There are some blood tests that my doctors do to watch for signs of internal organ damage.

Sorry this got so long!
Good luck on your journey!