Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 So your internist is only read up on prednisone, and doesn't have a clue about any of the other immunosuppressants. And yes, like all of us, you do have green horns- or some other anomality that makes you look like a sarcoidian. Hmmm-- that's it-- it's the look. Just kidding... Anyway, yes, the prednisone will shrink the granulomas-- temporarily. Take it away, it is just a matter of time before the monster is back-- with revenge - and they move you up to the next level of treatment. I would hope that you don't have to start with Remicade-- when you may respond well to Imuran. The best MD to prescribe this and follow you would be a Rheumatologist. They use immunosuppressants often, Methotrexate, Plaquenil, Imuran for all kinds of inflammatory diseases. And that is what we have. I suspect they will all want to try the pred first-- as that is what has always been done. Just recently I posted an article on pred and sarc and the long term side effects-- as well as a study that is showing that if you already have NS involvement-- it is not the place to start. I'll see if I can find it over the weekend. Have they done a gallium scan on your lungs? this shows up by highlighting the areas of sarc-- and is so very good at helping to get a dx. The other is that if you have an xray that shows the grans-- then they can do the bronchoscopy (it's alot easier on you than an open lung biopsy) and get a dx from there. At FSR www.stopsarcoidosis.org-- read Paradox's Journal. He is an MD with sarc. He has some really great insight into steroids and sarc-- and is learning along with all of us. I love how the docs blow us off when we start discussing minerals and such for pain control. They had all of 4 hrs of vitamin and mineral class in med school-- so are sadly, useless in this issue. I depend on my chiropractor, who has made her secondary specialty nutrition. She has her fibromyalgia under control with diet changes--- and because of this can still work. What I've learned from her is incredible- and piece by piece, I am putting the changes into my program. It is the one I share with all of you. You could still take the minerals, etc-- and do the pred. that wouldn't be a problem-- just make sure to detox the liver daily. It's an ordeal-- and even when I get crabby I'm still here to help..... Hugs, Tracie NS Co-owner/moderator REMICADE I mentioned remicade to my internist at my last visit and he looked at me cross-eyed or like I had horns.....He said the side affects of Remicade were "much worse" than that of the steroids.... I'm still researching and trying to know as much as I can about ALL the methods of treating sarcoid before I jump into ANY treatment... .and I have yet to have a lung biopsy....we' re speculating that I have lung sarcoid.....BE SURE TO RESEARCH before deciding on anything.... do your homework....on the subject of Dr's, my physician must've thought I was crazy....he shrugged at anything I had to say re: treatment, drugs, minerals for pain etc.....all he could come up with was "we need to shrink those nodes and the steroids will do it"..."and yes, you may end up with diabetes, heart disease etc".....GRRRRRR. ......i must've looked like a green-eyed monster to him....jamie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2009 Report Share Posted February 22, 2009 Rose and all Arava is a DMARD-- and works as an antiinflammatory. It can be hard on the gut, and for me, it shot my liver enymes way up. As for drugs to help make sure not to develop antibodies against the Remicade--- MTX is the first choice and if you can't do oral-- then the shots can help to bypass the liver. Remicade and MTX were engineered to compliment each other. Plaquenil can work, Imuran can work, as well as low dose prednisone. Prilosec is for gastritis-- a common problem with all these meds. (yep, I can finally out gas the guys!) Fosomax is for osteoporosis--- but check with your pharmacist-- I think it is not recommended with some of the anti-inflammatories. TAKE FOLIC ACID 1MG WITH ANY OF THE IMMUNOSUPPRESANTS--SO YOU DO NOT SET YOURSELF UP FOR PERNICIOUS ANEMIA!!! ALSO-- TAKE MILK THISTLE CAPSULES TO HELP KEEP THE LIVER IN GOOD SHAPE! (You can search the ARCHIVE MESSAGES by "milk thistle" and get info on dosage.) The other avenue for this question is www.sarcoidosissharma.com and send Dr. S a note, he will answer it. HE may already have this info on his site. Hope this helps, Tracie NS Co-owner/moderator Subject: RemicadeTo: "Tracie NS Tracie" Date: Saturday, February 21, 2009, 10:46 PM Tracie, I know you're feeling yucky, but I'm not sure of the correct answer for Barb on this: rose, i am on 20mg of prednisone (which they will start to ween me off on the 25th of this month!) 20mgs of arava, 20mgs of prilosec,and fosomax. is this the right meds so i do not build up antibodies? If I don't hear back from you, I'll do some more research (I don't even know what Arava is). I'm sending you some photos of my cat, Dude, to give you a smile. Love ya, kiddo. It’s the same Hotmail®. If by “same” you mean up to 70% faster. Get your account now. Quote Link to comment Share on other sites More sharing options...
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