Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 The longer you have been on the Pred & the higher the dosage, the more risk of complications from tapering too fast. 60mg is a relatively high dose even though you've only been on it for 4 weeks. But obviously people all respond differently to drugs & will react differently to stopping or reducing them. Adrenal crisis is not uncommon in folks taken off corticosteroids such as Prednisone; just type it in your search engine & lots of credible sites will come up. When you read through the causes, withdrawal from steroids is always there. My frustration with these docs is that although they may not have seen this happen, it's a life-threatening complication that is avoidable, so why not taper more slowly? I was on 40mg daily for 2 years & my neurologist tapered me off over several months. He told me that we could probably do it faster, but he just wanted to be on the safe side. The other issue, as several of us have pointed out, is the high probability of symptoms recurring when the Prednisone is stopped or reduced without another drug being added. Drugs such as Imuran are described as steroid-sparing because they continue to suppress the overactive immune system while allowing a reduction in the steroids. Somebody correct me if I'm wrong, but I think the only type of sarc that can be treated with steroids alone (oral, drops or shots in the eye) is uncomplicated ocular sarcoid. Once you have multi-system, or even pulmonary past stage I (enlarged hilar nodes only), I've never known anyone who got symptoms under control & stabilized with steroids only. Maybe skin sarc, but everyone I know with skin sarc has other organ involvement. I know it seems as if I'm beating a dead horse here, but after hearing the stories of so many members of this group over the years, it's been a recurring theme. If anyone has had a different experience, please share it. Maybe I'm too pessimistic. Okay, that the end of this ramble! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Fri, 29 Oct 2010 14:17:36 +1100> Subject: Re: Test results> > Thanks for the info on tapering off the pred. I've only been on the 60 mg/day for 4 weeks, does that make a difference as to how my body would tolerate coming off it this quickly?> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > .......................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Hi, Thanks for the information...my good news of a specialist in Marshfield fell through as he is not a specialist - reviewed my records and said I need to see a neurol. would not even give me a second opinion. They made an appointment for me to see a neuro.- DEC 23rd....I am tapering off the pred and will be done by then. Not sure what I should do as now I am no longer under any neurologist care, haven't found someone to take me, and my vision has gotten worse as now I am at 30mg. Crying...is close at hand. KP > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > > > > > Ramblin' Rose > > > Moderator > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > > > Subject: Test results > > > > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > > > > > Cheers, > > > > > > > > > > > > > > > > .................................................................................\ ........................ > > > > http://sutherland-studios.com.au > > > > > > > > Dummies author : > > > > http://tinyurl.com/CodesandCryptograms > > > > http://tinyurl.com/WordSearches > > > > > > > > .................................................................................\ ........................ > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > Message Archives:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members 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...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 I agree you should be very careful tapering of the Prednisone dosage, my neurologist brings my dose down by 1mg per month and ive been up and done like a yoyo. The highest was 60mg per day and I got down to 5mg last July but Im back up to 40mg. Does anyone no if the anxiety is a symtom of neurosarcoid or a side affect of Prednisone. To: neurosarcoidosis Sent: Fri, October 29, 2010 5:58:43 AMSubject: Prednisone issues The longer you have been on the Pred & the higher the dosage, the more risk of complications from tapering too fast. 60mg is a relatively high dose even though you've only been on it for 4 weeks. But obviously people all respond differently to drugs & will react differently to stopping or reducing them. Adrenal crisis is not uncommon in folks taken off corticosteroids such as Prednisone; just type it in your search engine & lots of credible sites will come up. When you read through the causes, withdrawal from steroids is always there. My frustration with these docs is that although they may not have seen this happen, it's a life-threatening complication that is avoidable, so why not taper more slowly? I was on 40mg daily for 2 years & my neurologist tapered me off over several months. He told me that we could probably do it faster, but he just wanted to be on the safe side. The other issue, as several of us have pointed out, is the high probability of symptoms recurring when the Prednisone is stopped or reduced without another drug being added. Drugs such as Imuran are described as steroid-sparing because they continue to suppress the overactive immune system while allowing a reduction in the steroids. Somebody correct me if I'm wrong, but I think the only type of sarc that can be treated with steroids alone (oral, drops or shots in the eye) is uncomplicated ocular sarcoid. Once you have multi-system, or even pulmonary past stage I (enlarged hilar nodes only), I've never known anyone who got symptoms under control & stabilized with steroids only. Maybe skin sarc, but everyone I know with skin sarc has other organ involvement. I know it seems as if I'm beating a dead horse here, but after hearing the stories of so many members of this group over the years, it's been a recurring theme. If anyone has had a different experience, please share it. Maybe I'm too pessimistic. Okay, that the end of this ramble! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Fri, 29 Oct 2010 14:17:36 +1100> Subject: Re: Test results> > Thanks for the info on tapering off the pred. I've only been on the 60 mg/day for 4 weeks, does that make a difference as to how my body would tolerate coming off it this quickly?> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > ........................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Anxiety is a side-effect of the Pred. Vivien> > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > ........................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 , the anxiety is probably Pred-related, but have you noticed if it improves when you are on the lower doses, then worsens as the dose increases? This is where keeping a symptom diary can be very helpful. Just get a little notebook & jot things down. Then I type mine up & save it in my computer. This has been useful several times, along with helping me prepare for doctor visits. Are you taking anything for the anxiety, or do you feel you need medication? If you prefer to avoid another drug, you might want to try meditation. MBSR (Mindfulness-Based Stress Reduction) is very good as helping with stress symptoms such as anxiety or depression, as well as both decreasing pain & improving the ability to cope with it. You can find some basic info on MBSR on the Internet; I'll look for a couple of links. I actually took an 8-week course about 3 years ago, which was great because I got some cd's to meditate with. Tracie has actually taught MBSR in the past; don't know if she's doing that now, with all her health issues. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 29 Oct 2010 12:57:04 -0700Subject: Re: Prednisone issues I agree you should be very careful tapering of the Prednisone dosage, my neurologist brings my dose down by 1mg per month and ive been up and done like a yoyo. The highest was 60mg per day and I got down to 5mg last July but Im back up to 40mg. Does anyone no if the anxiety is a symtom of neurosarcoid or a side affect of Prednisone. To: neurosarcoidosis Sent: Fri, October 29, 2010 5:58:43 AMSubject: Prednisone issues The longer you have been on the Pred & the higher the dosage, the more risk of complications from tapering too fast. 60mg is a relatively high dose even though you've only been on it for 4 weeks. But obviously people all respond differently to drugs & will react differently to stopping or reducing them. Adrenal crisis is not uncommon in folks taken off corticosteroids such as Prednisone; just type it in your search engine & lots of credible sites will come up. When you read through the causes, withdrawal from steroids is always there. My frustration with these docs is that although they may not have seen this happen, it's a life-threatening complication that is avoidable, so why not taper more slowly? I was on 40mg daily for 2 years & my neurologist tapered me off over several months. He told me that we could probably do it faster, but he just wanted to be on the safe side. The other issue, as several of us have pointed out, is the high probability of symptoms recurring when the Prednisone is stopped or reduced without another drug being added. Drugs such as Imuran are described as steroid-sparing because they continue to suppress the overactive immune system while allowing a reduction in the steroids. Somebody correct me if I'm wrong, but I think the only type of sarc that can be treated with steroids alone (oral, drops or shots in the eye) is uncomplicated ocular sarcoid. Once you have multi-system, or even pulmonary past stage I (enlarged hilar nodes only), I've never known anyone who got symptoms under control & stabilized with steroids only. Maybe skin sarc, but everyone I know with skin sarc has other organ involvement. I know it seems as if I'm beating a dead horse here, but after hearing the stories of so many members of this group over the years, it's been a recurring theme. If anyone has had a different experience, please share it. Maybe I'm too pessimistic. Okay, that the end of this ramble! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Fri, 29 Oct 2010 14:17:36 +1100> Subject: Re: Test results> > Thanks for the info on tapering off the pred. I've only been on the 60 mg/day for 4 weeks, does that make a difference as to how my body would tolerate coming off it this quickly?> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > .......................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 , I have found that anxiety and my Sarc go hand in hand. I started chewing my fingernails two years prior to being diagnosed. I believe it has to do with cortisol production by the adrenal glands. Cortisol regulates your fight or flight response, and is also the reason why fat is stored around the belly. As far as prednisone causing anxiety, I suppose it can, since it does affect the adrenals...but I didn't find it to be the case. However, I was only on a short dose of prednisone. The only definitive side effect I had with it was spiking blood pressure after I stopped. My Drs. are adamant that I should try to ride this out without drugs...just ibuprofen, unless absolutely necessary...as they feel my symptoms will come back worse once the drugs are removed. I have found that to be true so far...but I am lucky in that I'm not currently working...some days its a struggle through. I have found that removing " inflammatory " foods such as all forms of sugar (except Stevia) and red meats does help me a lot. I continue to try to get to my teen (somewhat anorexic) weight, as I believe that the Amyloid A protein that is involved in Sarc is not only produced by the liver, but also by certain fat cells. (Has anyone else read that???) My theory is the less fat I carry, the less Amyloid A my body can produce....just a theory though, but would love to hear from anyone if weight loss helped their symptoms. I guess the big question is does anxiety and long-term stress cause Sarc or does Sarc cause anxiety and stress. I believe that my Sarc was trigger by the environmental stressors (job, moving, illness and loss of loved ones, etc) in my life and it snowballed from there. Deb Z. Michigan > > I agree you should be very careful tapering of the Prednisone dosage, my > neurologist brings my dose down by 1mg per month and ive been up and done like a > yoyo. The highest was 60mg per day and I got down to 5mg last July but Im back > up to 40mg. Does anyone no if the anxiety is a symtom of neurosarcoid or a side > affect of Prednisone. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Rose My G.P. put me on Citalopram yesterday Ive never needed anything before for the anxiety. This started when I was on 5mg prednisone and my latest relapse started. If im no better by Monday im back in hospital again which I hate. My neurologist usually keeps me in for 5-6 weeks so heres hoping Prednisone does the trick. Again thanks to you all for your wisdom and kindness. To: neurosarcoidosis Sent: Sat, October 30, 2010 7:47:17 AMSubject: RE: Prednisone issues , the anxiety is probably Pred-related, but have you noticed if it improves when you are on the lower doses, then worsens as the dose increases? This is where keeping a symptom diary can be very helpful. Just get a little notebook & jot things down. Then I type mine up & save it in my computer. This has been useful several times, along with helping me prepare for doctor visits. Are you taking anything for the anxiety, or do you feel you need medication? If you prefer to avoid another drug, you might want to try meditation. MBSR (Mindfulness-Based Stress Reduction) is very good as helping with stress symptoms such as anxiety or depression, as well as both decreasing pain & improving the ability to cope with it. You can find some basic info on MBSR on the Internet; I'll look for a couple of links. I actually took an 8-week course about 3 years ago, which was great because I got some cd's to meditate with. Tracie has actually taught MBSR in the past; don't know if she's doing that now, with all her health issues. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: christine.robinson52@...Date: Fri, 29 Oct 2010 12:57:04 -0700Subject: Re: Prednisone issues I agree you should be very careful tapering of the Prednisone dosage, my neurologist brings my dose down by 1mg per month and ive been up and done like a yoyo. The highest was 60mg per day and I got down to 5mg last July but Im back up to 40mg. Does anyone no if the anxiety is a symtom of neurosarcoid or a side affect of Prednisone. To: neurosarcoidosis Sent: Fri, October 29, 2010 5:58:43 AMSubject: Prednisone issues The longer you have been on the Pred & the higher the dosage, the more risk of complications from tapering too fast. 60mg is a relatively high dose even though you've only been on it for 4 weeks. But obviously people all respond differently to drugs & will react differently to stopping or reducing them. Adrenal crisis is not uncommon in folks taken off corticosteroids such as Prednisone; just type it in your search engine & lots of credible sites will come up. When you read through the causes, withdrawal from steroids is always there. My frustration with these docs is that although they may not have seen this happen, it's a life-threatening complication that is avoidable, so why not taper more slowly? I was on 40mg daily for 2 years & my neurologist tapered me off over several months. He told me that we could probably do it faster, but he just wanted to be on the safe side. The other issue, as several of us have pointed out, is the high probability of symptoms recurring when the Prednisone is stopped or reduced without another drug being added. Drugs such as Imuran are described as steroid-sparing because they continue to suppress the overactive immune system while allowing a reduction in the steroids. Somebody correct me if I'm wrong, but I think the only type of sarc that can be treated with steroids alone (oral, drops or shots in the eye) is uncomplicated ocular sarcoid. Once you have multi-system, or even pulmonary past stage I (enlarged hilar nodes only), I've never known anyone who got symptoms under control & stabilized with steroids only. Maybe skin sarc, but everyone I know with skin sarc has other organ involvement. I know it seems as if I'm beating a dead horse here, but after hearing the stories of so many members of this group over the years, it's been a recurring theme. If anyone has had a different experience, please share it. Maybe I'm too pessimistic. Okay, that the end of this ramble! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Fri, 29 Oct 2010 14:17:36 +1100> Subject: Re: Test results> > Thanks for the info on tapering off the pred. I've only been on the 60 mg/day for 4 weeks, does that make a difference as to how my body would tolerate coming off it this quickly?> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > ........................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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...
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.