Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 HI Joan, Welcome to the family, I'm sorry you had to find us. Pred is one interesting drug-- the energy boost is incredible, and for many of us-- has been referred to as the "roller coaster ride from hell." When I first started on high dose pred 80mg daily, I was literally bouncing off the walls. We'd just moved that 1st weekend, and my poor hubby was trying to get my input on where something should go in an outdoor shed-- I'm on overload- and the neighbors got to see their new neighbor's wife taking a swing at her husband. Talk about first impressions- it took them 6 mo to introduce themselves. I gained 40 lbs in 30 days, and if I wasn't past hyper-- then I was sacked out for 4 hrs, before going into hyperdrive- again. It took 2 1/2 yrs to wean off it-- and yep, it kind of helped my lungs but the sarc came back, fully systemic. I had the sarc-induced aarthritis, my lungs are now (18 yrs later) 65% fibrosed, I have episodes of iritis, and I have all the neuro symptoms. Pred is great in the short run-- but long term you will need to look at DMARDS-- Disease Modifing AntiRheumatic Drugs, Imuran, Arava, Methotrexate, Plaquenil-- or BRM's-- Biological Response Modifiers--Enbrel, Humira, Cellcept, Remicade. These are steroid sparing, and what will happen is that as you wean off the pred, you add one med at a time, until you get a combination of what works for you. For me, it's been the MTX, Plaquenil and Remicade that has been the best combo. MTX helped with cognition and joint pain, Plaquenil helped with lung inflammation and memory, and the Remicade has helped keep the other symptoms under control-- and has taken away the inside the bone pain, along with the spinal arthritis issues. I so hope that you feel like you can ask questions, and we do our best to find answers. Our MESSAGE ARCHIVES and LINKS section have years of research articles that you can printo out and share with your docs-- and I hope you do so. Ask away, know that even our mods and owners are sick right now-- but we will get back to you ASAP. Sincerely, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Friday, October 23, 2009 2:12:36 PMSubject: Re: Hi all HI EVERYONE, AFTER BATTLING AND SUFFERING FROM FACIAL PAIN AND LOTS OF TESTING spinal tab MRIS - the neurologist and pulmonary spec have come up with a diagnosis - neuro sarcodosis. They have started me out on 60 mg predisone per day. I am feeling a little betterr. What can I expect, does anyone have an idea or experience from the predisone. Do not have much of an appetite. Joan L Hi all Hi everyone, I'm sorry I have not been available, I haven't been able to read many post either, right before we left for Calif I got Bronchitis, now that I'm home, I now have pneumonia, on prednisone, yuk and breathing treatments, antibiotic, 2nd round, so I am only up to sitting at the computer short times. of course when the prednisone kicks in, I may be up all night going through emails lol. I hope you are all hanging in there, I will get back up to speed as soon as I can.I couldn't get the article on Ron to open, did anyone else get it to open, and how? Thinking of you all, Marla Quote Link to comment Share on other sites More sharing options...
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