Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Hi Tammy, I am so sorry you have to deal with this disease. It is a challenge. You'll find we have about 370 members or so, and most all of us have sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. Now it is systemic--heart, lung, liver, muscles joints, ligaments--bones-- brain. I've done years on high dose sterioids- and am now on Remicade, Plaquenil and Methotrexate. The Remicade has been amazing-- I can generally complete sentences-- a huge improvement, and have been able to get off my oxygen during the day time. The cusp of one of the main valves is calcified due to sarc--so it no longer shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) and so far haven't required a pacemaker or meds. I hope that is years down the road. You'll find a wealth of information here, as well as develop some great friendships. We have 2 owners and 3 additional moderators. So generally speaking, we try to get questions and concerns answered daily--but once in a great while-- we'll all be in flare, so it may be a day or so. Welcome to the family, Tracie NS Co-owner/moderator PS. If you scroll down, you'll find the site address for our LINKS and ARCHIVES. There is a wealth of info, and you can print out what you need and take it to your MD's. It sounds as though you've got a good team already--so you are one step ahead of alot of the gang. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
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