Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Barbara, I am praying for you, I only was taken off of everything once and it came back with a vengence 6 weeksw later BUT this is how it starts for thousands of people (not the weirdo's most of are are) You will be fine and hopefully the first one since I've been on the board to go in to full and long term remission. G-d Bless you and we are all praying for you confused as ever!!!! hi everyone! i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Are they worried about your liver? How are your LFT's? (Liver Function tests). What about your CBC's? (Blood counts)? It amazes me, they put us on this stuff, then stop it and the problems come back.. The only reason to stop the treatment is that they are afraid your liver or lymphocytes are out of sync. If they haven't been running a CBC and LFT monthly, then I'd ask for one. Hopefully they put you on Folic Acid 1mg daily (get it by script) and that you've been using the Milk Thistle capsules. I would be asking them why they want you to quit the treatment. Good to see you post, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sat, November 21, 2009 10:35:32 AMSubject: confused as ever!!!! hi everyone!i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Please be careful. We have had the same issues here. was given the go ahead to back down on her prednisone dose when she first was diagnosed and the flare ups started all over. We finally had to go to other meds. I am extremely happy that you might be able to stop the meds but please proceed carefully. Also make sure the doctors explain fully as to why they are stopping the meds. MattSubject: Re: confused as ever!!!!To: Neurosarcoidosis Date: Saturday, November 21, 2009, 2:50 PM Barbara, I am praying for you, I only was taken off of everything once and it came back with a vengence 6 weeksw later BUT this is how it starts for thousands of people (not the weirdo's most of are are) You will be fine and hopefully the first one since I've been on the board to go in to full and long term remission. G-d Bless you and we are all praying for you confused as ever!!!! hi everyone! i have some news that my sarcoidosis is quieted down whatever that means. i am confused because they will not say that i am in remission but yet they want me to stop ALL MEDS. won't this make it come back? am i really healed? i am so confused now , i don't know which way to turn!!! i mean something wonderful has happened all of a sudden my dragging Quasimodo leg has decided to work! i sure hope someone can give me answers!!! btwy i am on remicade once a month and arava!i hope that everyone is doing well! Quote Link to comment Share on other sites More sharing options...
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