Re: Sarc clinic UCMC, NS info

[Guest guest]

will wait to see what the neurologist suggests we do next. I have so many questions! Am wondering if anyone knows about the clinic in ton. Is it an advantage to connect with a specialist in NeuroSarc since it is relatively rare? My doctors at Duke are great but I know none of them specializes in neurosarcoidosis.

Sharon,

Welcome to the "family." I'm not aware of the Clinic in ton, but if they specialize in Sarcoidosis-- it would be a great connection.

Most of our MD's have little knowledge of Neurosarcoidosis (NS) or even what to do when we have systemic progressive sarcoidosis. Like you, for the most part we were all given high dose Prednisone.

What the studies have shown is that when you've been on Prednisone, and have weaned off it-- you have a tendency to need additional treatments later on. I interrput this as the Pred feeding the disease (I'm not a doctor), but have lived with this disease for the last 16 yrs) and that when you take away the mask that the prednisone covers up-- you end up with more serious progressive sarcoidosis.

Because of the wonderful side effects of Prednisone (Diabetes, weight gain, hardening of the arteries, mood swings, etc.) we've had to change to "Steroid Sparing" medications.

Many of us have had luck with Imuran, Methotrexate, Plaquenil, and the Biologicals-- Remicade, Enbrel, or Humira.

Our medical insurance wants us to start at the lowest level of medications-- and that is a good idea. To start with the Biologicals when one of the DMARDS (Disease Modifying AntiRheumatic Drugs) would work for you, is a process of trial and error. It's by starting one at a time, and seeing what works, that you'll find the combination that will help stop progression.

In our LINKS and ARCHIVES-- the addresses are at the bottom of this and every email sent out-- you can look up different sites and articles to take with you to your MD's.

You will be their teacher on this disease-- so empower yourself by learning all you can. We are very willing to help decifer articles so that you understand what they are stating-- many of us are (were) in the medical field-- RN's, Medical Administrators, and teachers-- and we're willing to help.

Blessing to you,

Tracie

NS Co-owner/moderator

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