Re: cornflower blue

[Guest guest]

Hello, welcome to the group. You'll find a wealth of information, and many of us have been living with sarc for many years.

As for the fact your sarcoidosis is still progessing-- tells you that the prednisone isn't cutting it. You'll find you need a combination of immunosupressants. The Plaquenil you were on is a good place to start, then if they can add Methotrexate or Imuran-- and get you off the pred-- you may find you do much better.

Once sarcoidosis is "multi-systemic" and neuro- prednisone generally masks the progression-- and when we start going off it- our immune system takes off-- and more systems become involved.

You'll probably need immunosuppressants for the remainder of your life- as your immune system sees even healthy organs and tissue as foreign substance, and goes into hyperdrive, attacking lungs, your brain and nervous system, it can attack our eyes as iritis or uveitis (you'd have extreme sensitivity to light) and that must be watched closely to prevent glaucoma.

Our livers, kidneys, heart, muscles and ligaments become involved, and we get a "sarcoid induced arthritis." I know many of us have peripheral neuropathy as well as joint/muscle pain and many times the pain is in the bones themself.

This isnt' to scare you-- with the right combonation of meds, you can slow the progression-- and sometimes stop it.

In our LINKS and ARCHIVES-- the address is at the bottom of each and every email that goes out-- so just scroll down and you'll see it---- has so much info and articles you can print out and take to your MD's. There is alot of stuff on BRMS--Biological Response Modifiers, which work by stopping the production of TNF-b (tumor necrosing factor) so that we don't form tumors or granulomas. This is important as our body doesn't have an off switch in regards to our immune system. They are higher risk-- and some people can't handle them-- but if they work for you-- they're great.

Enbrel, Remicade and Humira are BRM's. Imuran, Arava, Methotrexate, Plaquenil, Thalidimide are all immunosupressants- and all have their place. Like I said- it truly takes a combination.

Let us know how else we can hlep, if you've got a question = ask. We'll see what we can do to help find an answer. Right now, our moderators are all very much in flares- so we're a bit slower getting things answered, but we will.

Take care,

Tracie

NS Co-owner/moderator