Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 In a message dated 3/14/02 2:47:22 PM Pacific Standard Time, writes: A 5mg drop, from 10? That sounds like a lot. My dr. has been dropping me 1 mg a month, and I haven't had any problems, so far. I'm at 4mg at the moment. Hope all goes well! Laurie Joanna, you probably are very familiar with typical schedules for tapering and are on top of the "drop" from 10 mg to 5. For other, new, people, I tapered to 7.5 and then went to 7.5 alternating with 5, then finally 5 alone -- about three months after I dropped from 10. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 I am on 10 mg right now. I had planned to drop to 8 mg, since the drop from 15 to 10 was a killer for me! I thought I had terminal flu! Anyway, the doctor gave me the script for 8 mg a day, and then Mom ended up in the hopsital and died before I got the script filled. I chose not to drop down to the 8mg during the funeral, etc., but will probably start next week once I get back to work. Then, I have Easter break to let my body totally adjust to it. I am hoping that the drop will be good for me, but won't know until the next labs. But so far, so good! debby Re: [ ] Prednisone tapering In a message dated 3/14/02 2:47:22 PM Pacific Standard Time, writes: A 5mg drop, from 10? That sounds like a lot. My dr. has been dropping me 1 mg a month, and I haven't had any problems, so far. I'm at 4mg at the moment. Hope all goes well! LaurieJoanna, you probably are very familiar with typical schedules for tapering and are on top of the "drop" from 10 mg to 5. For other, new, people, I tapered to 7.5 and then went to 7.5 alternating with 5, then finally 5 alone -- about three months after I dropped from 10. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Hi Everyone! I have been so glad to join this group and learn more about this strange disease. I am 44 years old and was recently diagnosed last month with CAH. I somehow contracted mono back in Sept from my little niece or nephew and didn’t even know it, had no symptoms. I went for a routine physical after moving back home to Chicago from New Orleans and my new primary doctor was concerned because my liver enzymes were elevated. He accused me of taking Esctacy! I was shocked that he asked me that, and we went back and forth, me trying to explain that I didn’t do drugs and him not believing me. It was a comical scene. Anyway, the enzymes were in the 810 and 300 range for the ALT and AST in Sept and I felt fine. He promptly sent me to a liver specialist. At the consult she told me that this autoimmune condition may be developing, because it was so atypical of just mono alone. They observed me for 3 more months and no medication and I improved but she would not let me out of her sight. I was wondering what the big deal was and just wanted to be done with the whole doctor routine. The enzyme levels went on their own down to 112 and 200. Then, everything started going haywire last month. The levels began to shoot straight up rapidly to the 300 range again. She immediately did a biopsy and put me on 30 mg prednisone and 50 mg Imuran 2 ½ weeks ago. The biopsy confirmed CAH (IAH) and the slide was sent to the Mayo clinic for confirmation. She kept saying she was so sorry, she wished it had been something else, like fatty liver. Well I saw her yesterday and she was so happy to see me. She told me that the liver enzymes are now normal and that she felt she had gotten me into remission. However I am to stay on the prednisone 20 mg and Imuran 50mg until further notice. The prednisone may be tapered down more today after I find out the results of the hepatic profile done yesterday. Now I am wondering what my eventual prognosis will be; Will I get continue to get worse in spite of my quick return to normal enzyme levels? Can I be cured? I don’t mind taking the drugs if that’s the only way to keep this at bay, but just wonder if I will just get worse anyway as this is a chronic condition. She feels that she had arrested it but told me with her head down, “I can’t promise you anything after 20 years”. She says I have mild disease and I will be fine. What do you all make of this? Thank you so much for your input! It has been so comforting reading all the posts, to know there are others facing this strange illness. in Arlington Heights, Il. Re: [ ] Prednisone tapering I am on 10 mg right now. I had planned to drop to 8 mg, since the drop from 15 to 10 was a killer for me! I thought I had terminal flu! Anyway, the doctor gave me the script for 8 mg a day, and then Mom ended up in the hopsital and died before I got the script filled. I chose not to drop down to the 8mg during the funeral, etc., but will probably start next week once I get back to work. Then, I have Easter break to let my body totally adjust to it. I am hoping that the drop will be good for me, but won't know until the next labs. But so far, so good! debby Re: [ ] Prednisone tapering In a message dated 3/14/02 2:47:22 PM Pacific Standard Time, writes: A 5mg drop, from 10? That sounds like a lot. My dr. has been dropping me 1 mg a month, and I haven't had any problems, so far. I'm at 4mg at the moment. Hope all goes well! Laurie Joanna, you probably are very familiar with typical schedules for tapering and are on top of the " drop " from 10 mg to 5. For other, new, people, I tapered to 7.5 and then went to 7.5 alternating with 5, then finally 5 alone -- about three months after I dropped from 10. Harper Group Rules 1. Please no religious, political, race or sexual preference discussions. 2. NO slamming of other members, advertising or vulgarity. Thank you! To UNsubscribe send a blank e-mail to -unsubscribeegroups Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 to M Skowron in Arlington Heights, I have the exact problem that you do. It has been very difficult to diagnose. I have no symptoms either. Mine is also complicated with the fact that I have no Adrenal glands ('s disease) They asked me several times if I drank alcohol which I don't even like the taste of. My liver counts go up and down too. Please excuse my typing. I keep making mistakes and trying to catch them all. I just got home from the hospital with 's disease...they took out my adrenal glands in 1971 because of a tumor, so when I get the flu it's off to the hospital I go. (I'll be glad when the effects of all this cortisone wear off. I was getting 300 milligrams a day while in the hospital and my normal dosage is 30. I'm wired for sure and my tongue and fingers are going faster than my brain...I can see why Olympics can lose there medals for taking steroids. I think I could run 10 miles, but then I'd probably have a heart attack. Ha! Ha! Ha! I wish I could get your private email to keep track of you. It's fun to talk to someone who has the same condition. MY ggt's were 521 normal is up to 44, my alk phosphate was 225 normal is up to 125, my ld's were 501, normal is up to 240, my ast's we 430, normal is up to 33, my alt's were up to 349 normal is up to 37. The Dr. gave me a print up to take to the liver specialist. Do you get all this stuff on your email? I'm getting up to 46 a day and I don't have time to read them all because I baby-sit my grand son. Yours just hit me because your condition sounds similar to mine and it hasn't been named yet. They did my biopsies at the hospital. You're lucky they sent yours to Mayo well I guess I'll talk to you later. Stay positive. I know it's not alot of fun thinking about. Re: [ ] Prednisone tapering In a message dated 3/14/02 2:47:22 PM Pacific Standard Time, writes: A 5mg drop, from 10? That sounds like a lot. My dr. has been dropping me 1 mg a month, and I haven't had any problems, so far. I'm at 4mg at the moment. Hope all goes well! Laurie Joanna, you probably are very familiar with typical schedules for tapering and are on top of the "drop" from 10 mg to 5. For other, new, people, I tapered to 7.5 and then went to 7.5 alternating with 5, then finally 5 alone -- about three months after I dropped from 10. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Hi again, everyone... it's me again I, again, need some feedback in regards to prednisone tapering! I know you were on it a long time, Doug....can you tell me how slowly you decreased? My Endo says my adrenals are very, very lazy and for me to wean down 1/2 a milligram a month. She said it could take up to a year to get me off of prednisone and I'm only on 6mg per day now She said once I get to 5mg, I'll have to carry around an emergency kit in the event of a crisis and I'll need to give myself a shot. I'm a tad bit confused....She wants to start me on another steroid once I get to 5mg...I asked her specifically for adrenal crisis symptoms and the list is longer than my leg!!!! Fatigue? Oh yes, I have that... LOL... along with the other host of symptoms I carry At this point, my adrenals are barely functioning....She's also scared me about my Vitamin D levels. They are so low she's having me take 50,000units 1X a week plus D3, 2000 units, per day... Any advice???????? Much love to all, In a message dated 3/23/2011 9:05:59 P.M. Eastern Daylight Time, shellysteiner33@... writes: Wow I am so sorry to hear about the dry mouth issue, however Xanex can cause dry mouth also. I would definetly speak to the pharmacist about help. ________________________________ From: " _heartabrasions@..._ (mailto:heartabrasions@...) " <_heartabrasions@..._ (mailto:heartabrasions@...) > _ _ (mailto: ) Sent: Wed, March 23, 2011 6:38:43 AM Subject: Re: [ ] Dry Mouth Hi All! I've had the dry mouth for quite awhile but it's only been bad as of recent. The trouble swallowing started around the time of adipex, a month or so before the Xolair. I'm going to discontinue the Adipex for a few days to see if it gets better. I am fine during the night but once I wake up, BAM, it hits me like a ton of bricks! I've been up an hour, had a cup of coffee, 2 Halls cough drops and a shot of chloraseptic. I'll definitely go to the drugstore today and see what they have to offer as well. Drinking water has never been a problem. I drink at least 120 ounces of water (8-10 bottles) each day... I'm attributing this to some correctol I took last week too....maybe my potassium is low... As far as anxiety... I have a huge issue with this but have never had the " dry swallowing or trouble swallowing " issues.....I take Xanax everyday (.5mg X 3 per day) and even after a xanax I do not notice a difference... the dryness is still there and therefore creating a hard time swallowing! I took my blood sugar last night and it was 115. When I woke up I took it as well and it was 106 so my sugar is normal as of right now..... Either way, I'm going to take everyones advice and rule all things out and get some stuff from OTC at the pharmacy!!! I want to thank you all for all of your help during this horrible time. Venting to others and getting great feedback is such a blessing!!!! I hope that I have helped you guys out in some kind way such as you all have helped me!!! You're all a blessing to me. My very best, In a message dated 3/23/2011 6:26:11 A.M. Eastern Daylight Time, _mpink@..._ (mailto:mpink@...) writes: , your post brought back memories when my mouth was so dry I could not lick a stamp.(Spiriva) The mouthwash that was mentioned helps, they also have special toothpaste and some sprays you can carry in your purse for when you are out and about. The " can't swallow " thing I also went through, mine was anxiety. If stopping the medicine does not help, try meditating or relaxation tapes. Sorry you are having such a struggle! Marilyn [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Your endo is right on track. The taper schedule makes perfect sense and the signs of low adrenal functioning are long. Fatigue is a big one. I have that schedule but thew it out the window when my asthma flared again. You will switch to cortef which is used for adrenal replacement instead of pred. Just works better to deal with those symptoms. The whole point is that you want to be low enough to stimulate your body to wake up and produce cortisol while not having too many symptoms of adrenal insufficiency.\ Don't worry about the vit D levels. They will rebound once you take more of it. Likely you are just not absorbing the vit D in your diet due to all your meds (very common). What are you doing to prevent osteoporosis? How old are you? , RN ________________________________ From: " heartabrasions@... " <heartabrasions@...> Sent: Thu, March 24, 2011 6:00:57 AM Subject: Re: [ ] PREDNISONE Tapering Hi again, everyone... it's me again I, again, need some feedback in regards to prednisone tapering! I know you were on it a long time, Doug....can you tell me how slowly you decreased? My Endo says my adrenals are very, very lazy and for me to wean down 1/2 a milligram a month. She said it could take up to a year to get me off of prednisone and I'm only on 6mg per day now She said once I get to 5mg, I'll have to carry around an emergency kit in the event of a crisis and I'll need to give myself a shot. I'm a tad bit confused....She wants to start me on another steroid once I get to 5mg...I asked her specifically for adrenal crisis symptoms and the list is longer than my leg!!!! Fatigue? Oh yes, I have that... LOL... along with the other host of symptoms I carry At this point, my adrenals are barely functioning....She's also scared me about my Vitamin D levels. They are so low she's having me take 50,000units 1X a week plus D3, 2000 units, per day... Any advice???????? Much love to all, In a message dated 3/23/2011 9:05:59 P.M. Eastern Daylight Time, shellysteiner33@... writes: Wow I am so sorry to hear about the dry mouth issue, however Xanex can cause dry mouth also. I would definetly speak to the pharmacist about help. ________________________________ From: " _heartabrasions@..._ (mailto:heartabrasions@...) " <_heartabrasions@..._ (mailto:heartabrasions@...) > _ _ (mailto: ) Sent: Wed, March 23, 2011 6:38:43 AM Subject: Re: [ ] Dry Mouth Hi All! I've had the dry mouth for quite awhile but it's only been bad as of recent. The trouble swallowing started around the time of adipex, a month or so before the Xolair. I'm going to discontinue the Adipex for a few days to see if it gets better. I am fine during the night but once I wake up, BAM, it hits me like a ton of bricks! I've been up an hour, had a cup of coffee, 2 Halls cough drops and a shot of chloraseptic. I'll definitely go to the drugstore today and see what they have to offer as well. Drinking water has never been a problem. I drink at least 120 ounces of water (8-10 bottles) each day... I'm attributing this to some correctol I took last week too....maybe my potassium is low... As far as anxiety... I have a huge issue with this but have never had the " dry swallowing or trouble swallowing " issues.....I take Xanax everyday (.5mg X 3 per day) and even after a xanax I do not notice a difference... the dryness is still there and therefore creating a hard time swallowing! I took my blood sugar last night and it was 115. When I woke up I took it as well and it was 106 so my sugar is normal as of right now..... Either way, I'm going to take everyones advice and rule all things out and get some stuff from OTC at the pharmacy!!! I want to thank you all for all of your help during this horrible time. Venting to others and getting great feedback is such a blessing!!!! I hope that I have helped you guys out in some kind way such as you all have helped me!!! You're all a blessing to me. My very best, In a message dated 3/23/2011 6:26:11 A.M. Eastern Daylight Time, _mpink@..._ (mailto:mpink@...) writes: , your post brought back memories when my mouth was so dry I could not lick a stamp.(Spiriva) The mouthwash that was mentioned helps, they also have special toothpaste and some sprays you can carry in your purse for when you are out and about. The " can't swallow " thing I also went through, mine was anxiety. If stopping the medicine does not help, try meditating or relaxation tapes. Sorry you are having such a struggle! Marilyn [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Hi carrie! & nbsp;Thanks for the quick response!!! I already have osteoporosis....thanks to prednisone!!! & nbsp;She isn't doing anything for it as she said no more meds until I can get off prednisone and get my vitamin D up...im 41 and going through surgically induced menopause too... I'm a bundle of mess right now tapering. & nbsp;The fatigue is EXTREME...my legs ache, I'm depressed, dizziness....its horrible! & nbsp;You would think I was coming off a narcotic!!!!! & nbsp;I've never been " dependent " on anything and I'm NEVER depressed and always spirited & amp; high strung. & nbsp;Today is the worst day Thanks so much for getting back to me....any advice on how to hang on during the taper?? I really don't know how long I can hang on like this -- Sent from my Palm Pre On Mar 24, 2011 8:35 AM, & lt;carrie72583@... & gt; wrote: & nbsp; Your endo is right on track. The taper schedule makes perfect sense and the signs of low adrenal functioning are long. Fatigue is a big one. I have that schedule but thew it out the window when my asthma flared again. You will switch to cortef which is used for adrenal replacement instead of pred. Just works better to deal with those symptoms. The whole point is that you want to be low enough to stimulate your body to wake up and produce cortisol while not having too many symptoms of adrenal insufficiency.\ Don't worry about the vit D levels. They will rebound once you take more of it. Likely you are just not absorbing the vit D in your diet due to all your meds (very common). What are you doing to prevent osteoporosis? How old are you? , RN ________________________________ From: " heartabrasions@... " & lt;heartabrasions@... & gt; Sent: Thu, March 24, 2011 6:00:57 AM Subject: Re: [ ] PREDNISONE Tapering Hi again, everyone... it's me again I, again, need some feedback in regards to prednisone tapering! I know you were on it a long time, Doug....can you tell me how slowly you decreased? My Endo says my adrenals are very, very lazy and for me to wean down 1/2 a milligram a month. She said it could take up to a year to get me off of prednisone and I'm only on 6mg per day now She said once I get to 5mg, I'll have to carry around an emergency kit in the event of a crisis and I'll need to give myself a shot. I'm a tad bit confused....She wants to start me on another steroid once I get to 5mg...I asked her specifically for adrenal crisis symptoms and the list is longer than my leg!!!! Fatigue? Oh yes, I have that... LOL... along with the other host of symptoms I carry At this point, my adrenals are barely functioning....She's also scared me about my Vitamin D levels. They are so low she's having me take 50,000units 1X a week plus D3, 2000 units, per day... Any advice???????? Much love to all, In a message dated 3/23/2011 9:05:59 P.M. Eastern Daylight Time, shellysteiner33@... writes: Wow I am so sorry to hear about the dry mouth issue, however Xanex can cause dry mouth also. I would definetly speak to the pharmacist about help. ________________________________ From: " _heartabrasions@..._ (mailto:heartabrasions@...) " & lt;_heartabrasions@..._ (mailto:heartabrasions@...) & gt; _ _ (mailto: ) Sent: Wed, March 23, 2011 6:38:43 AM Subject: Re: [ ] Dry Mouth Hi All! I've had the dry mouth for quite awhile but it's only been bad as of recent. The trouble swallowing started around the time of adipex, a month or so before the Xolair. I'm going to discontinue the Adipex for a few days to see if it gets better. I am fine during the night but once I wake up, BAM, it hits me like a ton of bricks! I've been up an hour, had a cup of coffee, 2 Halls cough drops and a shot of chloraseptic. I'll definitely go to the drugstore today and see what they have to offer as well. Drinking water has never been a problem. I drink at least 120 ounces of water (8-10 bottles) each day... I'm attributing this to some correctol I took last week too....maybe my potassium is low... As far as anxiety... I have a huge issue with this but have never had the " dry swallowing or trouble swallowing " issues.....I take Xanax everyday (.5mg X 3 per day) and even after a xanax I do not notice a difference... the dryness is still there and therefore creating a hard time swallowing! I took my blood sugar last night and it was 115. When I woke up I took it as well and it was 106 so my sugar is normal as of right now..... Either way, I'm going to take everyones advice and rule all things out and get some stuff from OTC at the pharmacy!!! I want to thank you all for all of your help during this horrible time. Venting to others and getting great feedback is such a blessing!!!! I hope that I have helped you guys out in some kind way such as you all have helped me!!! You're all a blessing to me. My very best, In a message dated 3/23/2011 6:26:11 A.M. Eastern Daylight Time, _mpink@..._ (mailto:mpink@...) writes: , your post brought back memories when my mouth was so dry I could not lick a stamp.(Spiriva) The mouthwash that was mentioned helps, they also have special toothpaste and some sprays you can carry in your purse for when you are out and about. The " can't swallow " thing I also went through, mine was anxiety. If stopping the medicine does not help, try meditating or relaxation tapes. Sorry you are having such a struggle! Marilyn [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 > > Doug....can you tell me how slowly you decreased? It took me a year to see any results from Xolair and my doctor started tapering me down from 40 to 30 to 20 to 10 etc.... This has been 6 years ago and I don't really remember all the details. I do remember getting more aches and pains in my joints and other places because the Pred was masking them. Doug Quote Link to comment Share on other sites More sharing options...
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