Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 It's me I am back from Mayo .. They sent me thru nurology they did just an EEG I suggested the BSER to my Dr but they kind of acted like that is an old outdated test. They did a cat scan of my head with contrast. Its been 5 years since I've had that. I really really run out of air big time, so if it is all in my head that would be great because that would mean that I get my breath back again.!!!!!!! See them on Monday M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 , Good to hear that you're in remission. You know, if your liver enzymes are up at all, it probalby means that the sarc is in the liver, as well as the effects of the pred on the liver. As far as your MD not being willing to put you on MTX, I'd really question that, especially if you have to go back on pred at some point. My liver enzymes have always been on the high side of normal, and some a bit high, but with lots of water drinking, and with milkthistle tablets, I brought them all back down to normal in the last 2 months. This is great! With MTX, you jus tneed to get a blood check each month with LFT's and if they're going up, you stop the MTX until they get normal again. As for your eyes-- pred will mess with vision. And yes, you are at that wonderful age of bifocals. (Tracie says what the hell-- you're 40+, I got my first pair for my 18th birthday)--(sorry no sympathy here)-- LOL! The main thing with the prednisone is that it screws with our hormones which screws with the stuff that screw with our eyes. (Sorry, I can't get it tonight. . ) It has alot to do with all the edema that comes with prednisone. Hugs, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hi , Glad you got some good news at Mayo. My rheumatologist (with many sarcoid patients) told me he wouldn't think of using methotrexate on me because the sarcoid was in my liver (biopsy proven) and my liver function tests were always abnormal, sometimes VERY abnormal. When other treatments failed he began to think about the Meth again. He reasoned that my liver function was poor BECAUSE of the sarcoid, so maybe a treatment that sometimes pushes sarcoid into remission would help instead of hurt. He checked with other sarcoid specialists about his idea. They said it sounded reasonable that the Meth might do more good than harm as long as my liver function was tested regularly (4 blood tests). We tried it at 7.5 mg a week and it helped a lot and I was able to go down to 2.5 mg of pred a day! What a relief! However, a few months later I had a sudden upsurge in neurosarc problems and my neurologist (not as familiar with sarcoid as the rheumy) pushed my pred to 40 mg a day. When that didn't do the trick he also upped the Meth to 12.5 mg a week. That took care of the neuro flare and my liver function tests continued to be okay (not all normal, but not too bad). Then the neuro decided to wean me down on the pred, 30 mg a day for a week, 20 mg a day for a week, and then stay at 10. He did not lower the Meth during this time, and my next set of liver function tests were by far THE WORST EVER! I got an " emergency " phone call from the doctor's office to discontinue the Meth immediately. My kidney function was much worse than usual also. I believe the reasoning behind using Meth when a patient has liver sarc was sound, but I think the Meth should have been tapered first. It might have worked for me that way. Good luck, Dee in Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Congrats my friend!!!!!!!!!!! Time is a very precious gift of God;so precious that it's only given to usmoment by moment.............. ~~~~~~Amelia Barr Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 , thank goodness my sarc has just been in my CNS and the Methotrexate has been a life saver for me because the steroids were killing me slowly but surely. I am on 10 one week then 20 the next and have been for a long time, luckily I haven't had any blood related problems. I figure if my liver ever does decide to go wacko it will be good and wacked because I am on two or three medications which are rough on the liver, my seizure medicine, the methotrexate just to mention two. I am glad that you are in remission and I hope things continue to go good for you. I will keep you in my prayers. Your friend in Plano, Tx Jeanna -- Re: Mayo Hi ,Glad you got some good news at Mayo. My rheumatologist (with many sarcoid patients) told me he wouldn't think of using methotrexate on me because the sarcoid was in my liver (biopsy proven) and my liver function tests were always abnormal, sometimes VERY abnormal.When other treatments failed he began to think about the Meth again. He reasoned that my liver function was poor BECAUSE of the sarcoid, so maybe a treatment that sometimes pushes sarcoid into remission would help instead of hurt. He checked with other sarcoid specialists about his idea. They said it sounded reasonable that the Meth might do more good than harm as long as my liver function was tested regularly (4 blood tests). We tried it at 7.5 mg a week and it helped a lot and I was able to go down to 2.5 mg of pred a day! What a relief!However, a few months later I had a sudden upsurge in neurosarc problems and my neurologist (not as familiar with sarcoid as the rheumy) pushed my pred to 40 mg a day. When that didn't do the trick he also upped the Meth to 12.5 mg a week. That took care of the neuro flare and my liver function tests continued to be okay (not all normal, but not too bad).Then the neuro decided to wean me down on the pred, 30 mg a day for a week, 20 mg a day for a week, and then stay at 10. He did not lower the Meth during this time, and my next set of liver function tests were by far THE WORST EVER! I got an "emergency" phone call from the doctor's office to discontinue the Meth immediately. My kidney function was much worse than usual also. I believe the reasoning behind using Meth when a patient has liver sarc was sound, but I think the Meth should have been tapered first. It might have worked for me that way.Good luck,Dee in Houston~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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