Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Walt, Bruce is right. It differs from doctor to doctor and patient to patient. When I tapered off Prednisone I had trouble with withdrawals going from 20mg to 15mg. I had to start over and taper down in 2.5mg incraments on a weekly basis(i.e. 20, 17.5, 15, 12.5, 10...) A good pill splitter came in handy! When i got down to 2.5 i stayed there for a week and then went to every other day. The side effects were much less and I was much more pleasant to be around . It's a good idea to let your doctor know if you decide to taper off so he's prepared to diagnose if you have any adverse side effects. Better Breathing to Ya! 33 FL IPF dx 1/06 > > > > Hello all > >  Hope everyone  is enjoying there Sunday!! > > I have a question. I am on 2omg of Prednisone and want to go off does > anybody know  what is the typical step down dosage? > > Thanks guys > > Walt on Whidbey > > Nsip,uip,IPF 06 > > > > > > > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at > the end of the day saying, " I will try again tomorrow.†> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Walt, Bruce is right. It differs from doctor to doctor and patient to patient. When I tapered off Prednisone I had trouble with withdrawals going from 20mg to 15mg. I had to start over and taper down in 2.5mg incraments on a weekly basis(i.e. 20, 17.5, 15, 12.5, 10...) A good pill splitter came in handy! When i got down to 2.5 i stayed there for a week and then went to every other day. The side effects were much less and I was much more pleasant to be around . It's a good idea to let your doctor know if you decide to taper off so he's prepared to diagnose if you have any adverse side effects. Better Breathing to Ya! 33 FL IPF dx 1/06 > > > > Hello all > >  Hope everyone  is enjoying there Sunday!! > > I have a question. I am on 2omg of Prednisone and want to go off does > anybody know  what is the typical step down dosage? > > Thanks guys > > Walt on Whidbey > > Nsip,uip,IPF 06 > > > > > > > > > > > > Courage doesn't always roar. Sometimes courage is the quiet voice at > the end of the day saying, " I will try again tomorrow.†> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Walt, Once I get to 20mgs. my program has always been to drop to 15 for a week, 10 a week, 7 or 7.5 for a week, five a week, then two for a week, then 1mg every other day for a week. This has always worked for me....though it takes longer to taper! I usually don't have all the aches and pains with it. The hard part is readjusting to how we really feel off of Pred. when we do get off! What a reminder, real quick! I hate Pred! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 I went off prednisone on Labor Day 6 mo ago. And I think I may have jumped off the last 7 1/2 a little too fast. Someone told me that the prednisone causes arthritis, but masks the pain, then when you go off, you feel the pain. Of course the aches and pains started but they kept getting worse and worse as time went on. One day my oxygen wasn't working for me, and I changed the tubing and it seemed to be fine for a day or two, then it started all over. Not working and then working for a short period of time. I thought it might be a valve stuck in the humidifier bottle, but several changes didn't seem to make a difference. Finally I used an E tank on continious and I needed much more than usual, so I decided it was probably me. finally the weekend was over and a neighbor dropped me at the door of my pcp and I walked about 15 feet and an 8 lpm didn't make it very well, although I do think most of it was panic. I was able to turn it down as I sat there and calmed down. I realized that I have been extremely shaky and the Dr suggested that I try 5 mg prednisone. It seemed a little better after that and she said I could try 10mg. I called my pulmo, and either they didn't give him the message or he forgot to get back to me. I called them later and they said he was out of the office and I should call my Pcp who had put me on the 5 and that is when she told me to try 10. I also asked for anxiety medicine, but haven't started it yet. My theory is that possibly I went down to fast and that my body didn't start making enough steorids yet and that may be I was getting a little bet worse as time went on. I think maybe the shaking is from lack of steroids. Well after I take it a few days, I guess I will have a better idea. My pulmo a walk, de[emdomg if you can get a decent parking space then to the elevator then a short hall, then all the way down the hall to the end of the building. I could never have made it there, plus I need an authorization to see him, although I think if I call a certain person at my group I can get an instant authorization, that is of couse if she is there and you can get thru voice mail. Insurance will drive us all crazy. Anyway that is my theory, but I ordinarly wouldn't have thought I would have trouble 6 mo.s later. Although it may have been a slow building process i guess. Any thoughts? Sorry this is so long. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 I went off prednisone on Labor Day 6 mo ago. And I think I may have jumped off the last 7 1/2 a little too fast. Someone told me that the prednisone causes arthritis, but masks the pain, then when you go off, you feel the pain. Of course the aches and pains started but they kept getting worse and worse as time went on. One day my oxygen wasn't working for me, and I changed the tubing and it seemed to be fine for a day or two, then it started all over. Not working and then working for a short period of time. I thought it might be a valve stuck in the humidifier bottle, but several changes didn't seem to make a difference. Finally I used an E tank on continious and I needed much more than usual, so I decided it was probably me. finally the weekend was over and a neighbor dropped me at the door of my pcp and I walked about 15 feet and an 8 lpm didn't make it very well, although I do think most of it was panic. I was able to turn it down as I sat there and calmed down. I realized that I have been extremely shaky and the Dr suggested that I try 5 mg prednisone. It seemed a little better after that and she said I could try 10mg. I called my pulmo, and either they didn't give him the message or he forgot to get back to me. I called them later and they said he was out of the office and I should call my Pcp who had put me on the 5 and that is when she told me to try 10. I also asked for anxiety medicine, but haven't started it yet. My theory is that possibly I went down to fast and that my body didn't start making enough steorids yet and that may be I was getting a little bet worse as time went on. I think maybe the shaking is from lack of steroids. Well after I take it a few days, I guess I will have a better idea. My pulmo a walk, de[emdomg if you can get a decent parking space then to the elevator then a short hall, then all the way down the hall to the end of the building. I could never have made it there, plus I need an authorization to see him, although I think if I call a certain person at my group I can get an instant authorization, that is of couse if she is there and you can get thru voice mail. Insurance will drive us all crazy. Anyway that is my theory, but I ordinarly wouldn't have thought I would have trouble 6 mo.s later. Although it may have been a slow building process i guess. Any thoughts? Sorry this is so long. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Marcia, I think that your guess is probably a good one. You may have dropped off that last 7.5mg too abruptly before your body was ready to start making it's own again. I have read that our bodies make around 7mg daily of cortisol naturally, so if you were still on 7.5mg your body had no reason to start making any yet. So you went from 7.5mg one day to 0mg the next. When I weaned I went from 10 to 7.5 to 5 to 2.5 to 0 every two weeks. And even doing that some people here will remember the horrendous joint pain that I had. I felt horrible and it lasted for several months. In fact it only subsided when I started using Advair after going off the prednisone. Advair has an inhaled steroid that was enough to make the joint pain go away. I don't have arthritis by the way, the joint pain I experienced was purely a by product of the prednisone weaning and that is very common. I'm glad that your pcp put you back on a low dose of pred for now. I would get in to see your pulmo though asap as your breathing issues make me nervous. It's unbelieveable to me that someone with a diagnosis of pulmonary fibrosis has to get authorization to see a pulmo. I realize that lots of folks have these kinds of insurance issues but it steams me nonetheless. Please look after yourself Marcia! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, March 2, 2009 3:54:52 PMSubject: Re:Going off Prednisone I went off prednisone on Labor Day 6 mo ago. And I think I may have jumped off the last 7 1/2 a little too fast. Someone told me that the prednisone causes arthritis, but masks the pain, then when you go off, you feel the pain. Of course the aches and pains started but they kept getting worse and worse as time went on. One day my oxygen wasn't working for me, and I changed the tubing and it seemed to be fine for a day or two, then it started all over. Not working and then working for a short period of time. I thought it might be a valve stuck in the humidifier bottle, but several changes didn't seem to make a difference. Finally I used an E tank on continious and I needed much more than usual, so I decided it was probably me. finally the weekend was over and a neighbor dropped me at the door of my pcp and I walked about 15 feet and an 8 lpm didn't make it very well, although I do think most of it was panic. I was able to turn it down as I sat there and calmed down. I realized that I have been extremely shaky and the Dr suggested that I try 5 mg prednisone. It seemed a little better after that and she said I could try 10mg. I called my pulmo, and either they didn't give him the message or he forgot to get back to me. I called them later and they said he was out of the office and I should call my Pcp who had put me on the 5 and that is when she told me to try 10. I also asked for anxiety medicine, but haven't started it yet. My theory is that possibly I went down to fast and that my body didn't start making enough steorids yet and that may be I was getting a little bet worse as time went on. I think maybe the shaking is from lack of steroids. Well after I take it a few days, I guess I will have a better idea. My pulmo a walk, de[emdomg if you can get a decent parking space then to the elevator then a short hall, then all the way down the hall to the end of the building. I could never have made it there, plus I need an authorization to see him, although I think if I call a certain person at my group I can get an instant authorization, that is of couse if she is there and you can get thru voice mail. Insurance will drive us all crazy. Anyway that is my theory, but I ordinarly wouldn't have thought I would have trouble 6 mo.s later. Although it may have been a slow building process i guess. Any thoughts? Sorry this is so long. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Thanks Beth. Although I guess I should clarify something. I didn't actually drop for 7 1/2 to 0. I dropped off a few mgs at a time for several days. However I am sure I dropped off way to fast, especially near the end. I wouldn't have thought it would bother me nearly 6 months later, however, I think I may have been having a little more trouble building up and didn't notice. Now that I have been on the prednisone about 6 days, I seem to be almost where I was with the oxygen, unless it starts going eratic again, also I realized that the joint pain seems to be extremely less. So hopefully that was the problem and if it continues, to work I will be in to see my pulmo. It would be nice if he would return phone calls. Every pulmo I have had was always the last door down the long hall at the other end of the building. Very fustrating. LOL Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 GOOD Morning Everyone Thanks for all your info on Prednisone. The Doc wants me to double it but I have been in for 6 months and it has done nothing for me. As for me I decided to go off. I have call in to the Doc. I get so much info here it’s great! THANKS!!!!! Walt Nsip,uip IPF 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Subject: Re: Going off PrednisoneTo: Breathe-Support Date: Tuesday, March 3, 2009, 12:39 AM Thanks Beth. Although I guess I should clarify something. I didn't actually drop for 7 1/2 to 0. I dropped off a few mgs at a time for several days. However I am sure I dropped off way to fast, especially near the end. I wouldn't have thought it would bother me nearly 6 months later, however, I think I may have been having a little more trouble building up and didn't notice. Now that I have been on the prednisone about 6 days, I seem to be almost where I was with the oxygen, unless it starts going eratic again, also I realized that the joint pain seems to be extremely less. So hopefully that was the problem and if it continues, to work I will be in to see my pulmo. It would be nice if he would return phone calls. Every pulmo I have had was always the last door down the long hall at the other end of the building. Very fustrating. LOL Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 insurance and prior authorization are a pain in the you know what i noticed the same thing, the long walk from the parking garage to the doc's office don't know much about coming off prednisone completely just know about increasing it and weaning slowly hope things work out Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re:Going off PrednisoneTo: Breathe-Support Date: Monday, March 2, 2009, 3:54 PM I went off prednisone on Labor Day 6 mo ago. And I think I may have jumped off the last 7 1/2 a little too fast. Someone told me that the prednisone causes arthritis, but masks the pain, then when you go off, you feel the pain. Of course the aches and pains started but they kept getting worse and worse as time went on. One day my oxygen wasn't working for me, and I changed the tubing and it seemed to be fine for a day or two, then it started all over. Not working and then working for a short period of time. I thought it might be a valve stuck in the humidifier bottle, but several changes didn't seem to make a difference. Finally I used an E tank on continious and I needed much more than usual, so I decided it was probably me. finally the weekend was over and a neighbor dropped me at the door of my pcp and I walked about 15 feet and an 8 lpm didn't make it very well, although I do think most of it was panic. I was able to turn it down as I sat there and calmed down. I realized that I have been extremely shaky and the Dr suggested that I try 5 mg prednisone. It seemed a little better after that and she said I could try 10mg. I called my pulmo, and either they didn't give him the message or he forgot to get back to me. I called them later and they said he was out of the office and I should call my Pcp who had put me on the 5 and that is when she told me to try 10. I also asked for anxiety medicine, but haven't started it yet. My theory is that possibly I went down to fast and that my body didn't start making enough steorids yet and that may be I was getting a little bet worse as time went on. I think maybe the shaking is from lack of steroids. Well after I take it a few days, I guess I will have a better idea. My pulmo a walk, de[emdomg if you can get a decent parking space then to the elevator then a short hall, then all the way down the hall to the end of the building. I could never have made it there, plus I need an authorization to see him, although I think if I call a certain person at my group I can get an instant authorization, that is of couse if she is there and you can get thru voice mail. Insurance will drive us all crazy. Anyway that is my theory, but I ordinarly wouldn't have thought I would have trouble 6 mo.s later. Although it may have been a slow building process i guess. Any thoughts? Sorry this is so long. Marcia Quote Link to comment Share on other sites More sharing options...
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