Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 With the sarcoid in my brain and eyes both being in remission my Doctor and I had decided that I should try and come off the steroids, cutting them by 1mg every 2 months. I have had a great year so far until my last drop of 4mg to 3mg (which he said could happen) and then I started getting problems again. A couple of weeks ago my legs got a little painful and found it difficult to walk again, balance was off slightly too. Fatigue has hit me again and I have noticed my eyes going blurry again. I'm a little frustrated because I really wanted to come off the steroids, but I also don't want to come off them and then have to go back on 80mg again. I have an appointment next month with my Doctor who will document any problems and will advise what he thinks I should do? Has anybody else had problems with coming off of steroids? or have to stay on steroids long term. This has been my second course over 3 and a half years (with a 9 month break in between). I would be interested to hear any stories. Becky UK _________________________________________________________________ Windows Live™ Messenger has arrived. Click here to download it for free! http://imagine-msn.com/messenger/launch80/?locale=en-gb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Has anybody else had problems with coming off of steroids? or have to stay on steroids long term. Becky, Coming off steroids is hell. On everyone. One of the ways to overcome the withdrawal is to be going up on Methotrexate or Plaquenil as you come down off the prednisone (or solumedrol). I spent 2 1/2 yrs starting at 80mg daily to wean off, then was in "remission" for 5 yrs, the sarc came back-- so back onto 60mg every other day and 15 months to wean off. The prednisone put 40 pounds on me in the first 30 days, weight I've never been able to lose. all the other stuff has added another 20 pounds-- and I'm only 5'1" tall. My son refers to me as "Pillsbury" and I prefer "Buddha." thank God that we don't have the "afros"-- as steroids and basketball hairdo's are as much a fashion insult as is the guys "Speedo's." As far as the side effects of coming off, as you know what happens is that when we take prednisone, our own body shuts down the production of cortisol. Normally our adrenal glands produce 15mg of cortisol daily, and when we take 80mg-- this gets shut down-- and has to be retrained to produce cortisol again. Cortisol regulates heart beats, it helps with normal inflammation and injury, it is triggered to start the "fight or flight" system to get us out of danger--etc. Without it, we don't produce the other hormones necessary to control pain adequately. so yeah, you end up with more pain, more inflammation, and more weakness, along with the added fatigue. The other part is that chronic use of steroids hardens arteries, causes excessive water retention, causes cataracts, and leads to diabetes. All of which when disrupted as we try to get off-- are organ systems that have to learn to work with less than it's become used to. This last time I had to get off (my pulm had told me that if my sarc ever relapsed, don't let them put me on pred- as we'd create more problems systemically than we'd help-- and yep, that's what it did.) I ended up on imuran, then Arava, then Plaquenil, then Methotrexate, then off the imuran because my liver was gettng screwed up, off Arava because of an allergic reaction, and MTX and Plaquenil alone weren't controlling the neurological and the dementia- as well as my lung function (diffusion capacity) had decreased to 48%. I ended up on oxygen 24/7-- and by researching on my own, found the Remicade Clinical trial. I was one of 120 people worldwide to get into the trial-- there were only 4 people in LA, 5 in Seattle, and 5 in Denver-- and I was the 4th in LA. The addition of the Remicade to my MTX and Plaquenil has made it so that my cognitive abilities are better-- not good, but better. My lung diffusion has increased, although I've lost 55% of my lung capacity-- and my diffusion rate at altitude is done into the high 80%. (This is up from 68% so I'll take it.) Also, with the remicade, my spinal sarc induced arthritis is much better, and my joints still hurt- but at least I'm not having to use pain meds. (Which is good for me as I was addicted.) In the ARCHIVES you'll find numerous posts on Pain Meds, Steroids, addiction, and more. The address is at the bottom of this and every email that goes out. ( A few computers don't get the disclaimers and routine notices at the bottom--so if you're one of those- let us know and we'll send it out as an email.) Take care, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Has anybody else had problems with coming off of steroids? or have to stay on steroids long term. Becky, Coming off steroids is hell. On everyone. One of the ways to overcome the withdrawal is to be going up on Methotrexate or Plaquenil as you come down off the prednisone (or solumedrol). I spent 2 1/2 yrs starting at 80mg daily to wean off, then was in "remission" for 5 yrs, the sarc came back-- so back onto 60mg every other day and 15 months to wean off. The prednisone put 40 pounds on me in the first 30 days, weight I've never been able to lose. all the other stuff has added another 20 pounds-- and I'm only 5'1" tall. My son refers to me as "Pillsbury" and I prefer "Buddha." thank God that we don't have the "afros"-- as steroids and basketball hairdo's are as much a fashion insult as is the guys "Speedo's." As far as the side effects of coming off, as you know what happens is that when we take prednisone, our own body shuts down the production of cortisol. Normally our adrenal glands produce 15mg of cortisol daily, and when we take 80mg-- this gets shut down-- and has to be retrained to produce cortisol again. Cortisol regulates heart beats, it helps with normal inflammation and injury, it is triggered to start the "fight or flight" system to get us out of danger--etc. Without it, we don't produce the other hormones necessary to control pain adequately. so yeah, you end up with more pain, more inflammation, and more weakness, along with the added fatigue. The other part is that chronic use of steroids hardens arteries, causes excessive water retention, causes cataracts, and leads to diabetes. All of which when disrupted as we try to get off-- are organ systems that have to learn to work with less than it's become used to. This last time I had to get off (my pulm had told me that if my sarc ever relapsed, don't let them put me on pred- as we'd create more problems systemically than we'd help-- and yep, that's what it did.) I ended up on imuran, then Arava, then Plaquenil, then Methotrexate, then off the imuran because my liver was gettng screwed up, off Arava because of an allergic reaction, and MTX and Plaquenil alone weren't controlling the neurological and the dementia- as well as my lung function (diffusion capacity) had decreased to 48%. I ended up on oxygen 24/7-- and by researching on my own, found the Remicade Clinical trial. I was one of 120 people worldwide to get into the trial-- there were only 4 people in LA, 5 in Seattle, and 5 in Denver-- and I was the 4th in LA. The addition of the Remicade to my MTX and Plaquenil has made it so that my cognitive abilities are better-- not good, but better. My lung diffusion has increased, although I've lost 55% of my lung capacity-- and my diffusion rate at altitude is done into the high 80%. (This is up from 68% so I'll take it.) Also, with the remicade, my spinal sarc induced arthritis is much better, and my joints still hurt- but at least I'm not having to use pain meds. (Which is good for me as I was addicted.) In the ARCHIVES you'll find numerous posts on Pain Meds, Steroids, addiction, and more. The address is at the bottom of this and every email that goes out. ( A few computers don't get the disclaimers and routine notices at the bottom--so if you're one of those- let us know and we'll send it out as an email.) Take care, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Has anybody else had problems with coming off of steroids? or have to stay on steroids long term. Becky, Coming off steroids is hell. On everyone. One of the ways to overcome the withdrawal is to be going up on Methotrexate or Plaquenil as you come down off the prednisone (or solumedrol). I spent 2 1/2 yrs starting at 80mg daily to wean off, then was in "remission" for 5 yrs, the sarc came back-- so back onto 60mg every other day and 15 months to wean off. The prednisone put 40 pounds on me in the first 30 days, weight I've never been able to lose. all the other stuff has added another 20 pounds-- and I'm only 5'1" tall. My son refers to me as "Pillsbury" and I prefer "Buddha." thank God that we don't have the "afros"-- as steroids and basketball hairdo's are as much a fashion insult as is the guys "Speedo's." As far as the side effects of coming off, as you know what happens is that when we take prednisone, our own body shuts down the production of cortisol. Normally our adrenal glands produce 15mg of cortisol daily, and when we take 80mg-- this gets shut down-- and has to be retrained to produce cortisol again. Cortisol regulates heart beats, it helps with normal inflammation and injury, it is triggered to start the "fight or flight" system to get us out of danger--etc. Without it, we don't produce the other hormones necessary to control pain adequately. so yeah, you end up with more pain, more inflammation, and more weakness, along with the added fatigue. The other part is that chronic use of steroids hardens arteries, causes excessive water retention, causes cataracts, and leads to diabetes. All of which when disrupted as we try to get off-- are organ systems that have to learn to work with less than it's become used to. This last time I had to get off (my pulm had told me that if my sarc ever relapsed, don't let them put me on pred- as we'd create more problems systemically than we'd help-- and yep, that's what it did.) I ended up on imuran, then Arava, then Plaquenil, then Methotrexate, then off the imuran because my liver was gettng screwed up, off Arava because of an allergic reaction, and MTX and Plaquenil alone weren't controlling the neurological and the dementia- as well as my lung function (diffusion capacity) had decreased to 48%. I ended up on oxygen 24/7-- and by researching on my own, found the Remicade Clinical trial. I was one of 120 people worldwide to get into the trial-- there were only 4 people in LA, 5 in Seattle, and 5 in Denver-- and I was the 4th in LA. The addition of the Remicade to my MTX and Plaquenil has made it so that my cognitive abilities are better-- not good, but better. My lung diffusion has increased, although I've lost 55% of my lung capacity-- and my diffusion rate at altitude is done into the high 80%. (This is up from 68% so I'll take it.) Also, with the remicade, my spinal sarc induced arthritis is much better, and my joints still hurt- but at least I'm not having to use pain meds. (Which is good for me as I was addicted.) In the ARCHIVES you'll find numerous posts on Pain Meds, Steroids, addiction, and more. The address is at the bottom of this and every email that goes out. ( A few computers don't get the disclaimers and routine notices at the bottom--so if you're one of those- let us know and we'll send it out as an email.) Take care, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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