Guest guest Posted September 8, 2009 Report Share Posted September 8, 2009 Greg, It's important that your docs check your CBC levels and your liver enzymes monthly when you are on any of the BRM's (Biological Response Modifier.) You should also be taking a Folic Acid supplement to ward off any anemia problems. I know that with the Remicade, I'm exhausted for a few days afterward, then bounce back for a few weeks, until the week prior to the next infusion-- but hey, 60% of each 28 days is pretty good. As for the MSM powder-- don't quit it! If it helps a little bit, try increasing it-- or take it more times each day-- it's like Vit C-- it's water soluble, and what your body doesn't need, it'll pee out. You cannot take too much! We are so very nutrient and vitamin/mineral deficient-- that we need all the help we can get. the pred leaches all the calcium/magnesium from your bones-- so your body is thinking it has to store calcium in weird places (joints, ligaments, muscles, kidneys, gallbladder) and that for us, is a signal for our body to send it's immune system into overdrive and now it's got a foundation to build more granulomas. Then you get the inflammation (that is what the immunes system sends out), and a signal to send more to fight the inflammation-- can you say "rat running on the exercise wheel from hell"-- yep, you got the picture. So by getting all these issues into balance-- nutrition, hydration, vitamins/minerals-- we're going to be more successful controlling the pain that comes with this disease. It is a slow process, and has to be done with baby steps-- one issue at a time-- but I can say first hand it's made a difference. I'm not yet where I want to be, and there is alot of permanent damage-- but at least my pain level is coming back under control. Read in www.arthritistoday.org--- the Vitamin and Mineral Guide, and you'll find alot of info that can help you while you wean off the pred. Take care, Tracie NSCo-owner/moderator To: Neurosarcoidosis Sent: Tuesday, September 8, 2009 4:04:57 PMSubject: Humira and Prednisone Is there anyone that was on Prednisone and then was change abd put on Humira. I am wondering what I can expect. Took my first shot of Humira on Friday 9-6-09 and I am having to be tired at on times. Have to do two shots and month and check for any negative reactions. If no negative reactions then wean down prednisone 2.5 mg like 20 mg down to 17.5 mg then down to 15 mg and so on. Been on Prednisone for last 15+ months from over 100 mg to 60 mg and last 12 months been at 20 mg. Prednisone has made me Pre-diabetic and given me RA. So doc is proscribing Humira for both the Neurosarcoidosis and Ra diagnoses. Any one been on both and has been extremley tired???? Of course this short of time Humira has not taken care of the joint pains yet. I am sure it will take a couple of several doses to to start working. Until then I will continue to use MSM powder for awhile more it seems to help a little. Love and Hate Prednisone. Love the fact that it is keeping my sarcoid in check. But hate all those ____________ ____ blankey blankey side effects, and I know I don't have to explain them to y'all. Because we are all experienced with them. Well thanks and may y'all be blessed with health and wellness. Greg aka KrumdawgEven a dog knows joy is important in life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2009 Report Share Posted September 8, 2009 Tracie, You are such a wealth of information. I do appreciate you . I will check out that link and thank you for you responds. I am so glad to have found this family of Brothers and Sisters of this Sarcoidosis. This has been proving to be a great place for friendship and information. I do sincerely wish all my friends , Brothers and Sisters all the Health and Wellness in the world and they are all in my prayers every nite. I know you haven't been feeling well lately and it is my wish and prayer that you feel better soon. Again thank you very much for you timely responds to me question. Greg aka Krumdawg Even an old dog can learn new tricks. From: tracie feldhaus Sent: Tuesday, September 08, 2009 10:07 PM To: Neurosarcoidosis Subject: Re: Humira and Prednisone Greg, It's important that your docs check your CBC levels and your liver enzymes monthly when you are on any of the BRM's (Biological Response Modifier.) You should also be taking a Folic Acid supplement to ward off any anemia problems. I know that with the Remicade, I'm exhausted for a few days afterward, then bounce back for a few weeks, until the week prior to the next infusion-- but hey, 60% of each 28 days is pretty good. As for the MSM powder-- don't quit it! If it helps a little bit, try increasing it-- or take it more times each day-- it's like Vit C-- it's water soluble, and what your body doesn't need, it'll pee out. You cannot take too much! We are so very nutrient and vitamin/mineral deficient-- that we need all the help we can get. the pred leaches all the calcium/magnesium from your bones-- so your body is thinking it has to store calcium in weird places (joints, ligaments, muscles, kidneys, gallbladder) and that for us, is a signal for our body to send it's immune system into overdrive and now it's got a foundation to build more granulomas. Then you get the inflammation (that is what the immunes system sends out), and a signal to send more to fight the inflammation-- can you say "rat running on the exercise wheel from hell"-- yep, you got the picture. So by getting all these issues into balance-- nutrition, hydration, vitamins/minerals-- we're going to be more successful controlling the pain that comes with this disease. It is a slow process, and has to be done with baby steps-- one issue at a time-- but I can say first hand it's made a difference. I'm not yet where I want to be, and there is alot of permanent damage-- but at least my pain level is coming back under control. Read in www.arthritistoday.org--- the Vitamin and Mineral Guide, and you'll find alot of info that can help you while you wean off the pred. Take care, Tracie NSCo-owner/moderator From: gregorykrumme <krumdawg (AT) tx (DOT) rr.com>To: Neurosarcoidosis Sent: Tuesday, September 8, 2009 4:04:57 PMSubject: Humira and Prednisone Is there anyone that was on Prednisone and then was change abd put on Humira. I am wondering what I can expect. Took my first shot of Humira on Friday 9-6-09 and I am having to be tired at on times. Have to do two shots and month and check for any negative reactions. If no negative reactions then wean down prednisone 2.5 mg like 20 mg down to 17.5 mg then down to 15 mg and so on. Been on Prednisone for last 15+ months from over 100 mg to 60 mg and last 12 months been at 20 mg. Prednisone has made me Pre-diabetic and given me RA. So doc is proscribing Humira for both the Neurosarcoidosis and Ra diagnoses. Any one been on both and has been extremley tired???? Of course this short of time Humira has not taken care of the joint pains yet. I am sure it will take a couple of several doses to to start working. Until then I will continue to use MSM powder for awhile more it seems to help a little. Love and Hate Prednisone. Love the fact that it is keeping my sarcoid in check. But hate all those ____________ ____ blankey blankey side effects, and I know I don't have to explain them to y'all. Because we are all experienced with them. Well thanks and may y'all be blessed with health and wellness. Greg aka KrumdawgEven a dog knows joy is important in life. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.