Re: hi - new member/concerned friend of a patient.

[Guest guest]

,

You've come to the right place. We have a section where we have articles that you can print out and take to the MD's. Our LINKS and ARCHIVES (Scroll down, you'll find the address at the bottom of this and every email) and puruse the sections. Many of the articles are in simple english-- laymans' terms.

If you have specific questions- I'll be glad to translate.

Sarcoidosis is an autoimmune disease where your immune system has been triggered to try to heal something. The white cells do their job, and then a protein cell - TNF-a comes out to clean up the white cells. Then a second TNF-b protein comes along to clean out the TNF-a.

What happens is that our bodies don't shed the cells like it should and one protein builds on the other-- forming granulomas. These granulomas change the structure of our organs, and then the organs don't work correctly.

The scientists don't know what causes sarc, so we don't have a cure. What they can do is slow the progression of the disease with immunosupressants. Most MD's will start with prednisone at high dose. This helps to bring the inflammation down-- but take it away, and the sarc decides to become more aggressive.

Most of us can't handle long-term prednisone, you get the weight gain, high blood sugars, mania, aggression, hyperactiviity, etc.

So we end up on "steroid sparing" immunosupressants. Imuran, Arava, Plaquenil, Methotrexate, Enbrel, Humira, Remicade-- are all choices. It truly takes a try one- see what helps approach. Generally, we need a combination of meds customized to our bodies.

Many times NS (neurosarcoidosis) will mimic Multiple Sclerosis, Rheumatoid Arthritis, Peripheral Neuropathy and Dementia-- all rolled into one. You can have clear brain scans, and still have NS. There are no specific tests for NS-- so they have to rule it out by testing and proving that it's not one of the other autoimmune diseases. (And sometimes we end up with more than one..)

NS is nasty, and it will seem to you that what you read is that you're doomed. Not really, as most often the progresses slowly over a long period of time. I for one, have been battling sarc for the last 17 yrs. The last 7 with it being systemic and vascular so that the inflammation in my brain vessels can make some days good, and some days, I loose my short term memory, problem solving, etc. It just depends on where the pressure hits in my brain as to what kind of effect it has day to day.

You'll see that most MD's will tell you that sarc is benign, and will "burn" itself out over a few years. That may be true for the greater population-- about 80%. We are the 20% that has a progressive, chronic course- and only 5% of us will develop NS. So we are the "long shots."

You'll find that you will be the educators for the MD's. They honestly will see maybe 2 people with sarcoidosis-- and maybe one in 10 MD's will ever see someone with systemic or NS.

We truly appreciate it when friends or family come in and help their loved ones find answers. It is a difficult path-- and we need the help. The exhaustion and fatigue are so very overwhelming, if you think of how you felt when you've had pneumonia or a flu that layed you out for a few weeks-- well this is worse. That level of exhaustion would be a step up.

Let us know how we can help, if you find an article that you don't understand- share it and we'll see if one of us can explain it in laymans terms.

Most sincerely,

Tracie

NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year.