Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Hi there, and thanks for the words of support. Sometimes I just wish Joe would put his arms around me and tell me he loves me and offer some words of comfort, Instead, what I get from him is nearly constant fighting over this and that, he refuses to help around the house, he won't even pick up his clothes, where he drops them on the floor, and everything wrong in our life is MY fault. We live in the same place, but our paths rarely cross any more. I tell him I have to go to the RA doctor, (I rarely am well enough to drive) yet, he will do something to make it impossible for me to go to the dr, like taking off to go somewhere and not getting back in time.....sometimes its like he goes out ofhis way to cause me problems, but then when I do not get my shot and my pain comes back bad, he tells me its my fault that I shold have gone to get my shot....and i tell him he was not home for me to go and thus ensues an argument. I am tired, and annoyed and would rather live alone than to go through this. Three years now. Kitt > > I think most of us have dealt with " it's all in your head " . My own wife had > that attitude for a long time because she couldn't see any physical > difference. My older sister still says that to me after 17 years of > suffering the same fate as our mother, and she still thinks 'it's all in our > heads' even after her own daughter was suffering Fibro and some RA, and was > found dead one morning with a needle in her arm. > > It takes time and some cooperation for the family unit to succeed is > handling the effects of RA on the family. Sometimes it never happens and the > family is broken up simply because you can't do the things you did before > 'for no obvious' reason. I was lucky because we have been married since 1964 > and are still on our honeymoon. I hope you and Kitt and the rest with this > family problem have the same luck as I. > > Dennis in Eastexas > " It's not Rocket Surgery " > > [ ] Hi...I am new here. I was just diagnosed with R.A. > > > > Hi, > > I am 34 years old and just found out last week that I have R.A. > > I am having a hard time with it. My Family Doc...took two weeks to get > > my blood work back.... > > I feel like crap and everyone thinks I am crazy. I am fine some days > > and others I wake up and can not walk. > > My husband thinks it is all in my head, blames me being overweight, and > > for drinking Coke and says that it what is causing my pain. > > I had my first appointment with a Rheumatoligist and felt much better > > when I talked to him. I am on 800 mg of Advil and some days feel > > better. > > My pain started in sept, and was in my shoulders. Now my knees are the > > worst and my toes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Kitt, I am so sorry you have to put up with Joe and the disease one is bad enough without the other one. Just wanted to let you know we are here if you need us. Marsha kitt021355 <kitt021355@...> wrote: Hi there, and thanks for the words of support. Sometimes I just wish Joe would put his arms around me and tell me he loves me and offer some words of comfort, Instead, what I get from him is nearly constant fighting over this and that, he refuses to help around the house, he won't even pick up his clothes, where he drops them on the floor, and everything wrong in our life is MY fault. We live in the same place, but our paths rarely cross any more. I tell him I have to go to the RA doctor, (I rarely am well enough to drive) yet, he will do something to make it impossible for me to go to the dr, like taking off to go somewhere and not getting back in time.....sometimes its like he goes out ofhis way to cause me problems, but then when I do not get my shot and my pain comes back bad, he tells me its my fault that I shold have gone to get my shot....and i tell him he was not home for me to go and thus ensues an argument. I am tired, and annoyed and would rather live alone than to go through this. Three years now. Kitt > > I think most of us have dealt with " it's all in your head " . My own wife had > that attitude for a long time because she couldn't see any physical > difference. My older sister still says that to me after 17 years of > suffering the same fate as our mother, and she still thinks 'it's all in our > heads' even after her own daughter was suffering Fibro and some RA, and was > found dead one morning with a needle in her arm. > > It takes time and some cooperation for the family unit to succeed is > handling the effects of RA on the family. Sometimes it never happens and the > family is broken up simply because you can't do the things you did before > 'for no obvious' reason. I was lucky because we have been married since 1964 > and are still on our honeymoon. I hope you and Kitt and the rest with this > family problem have the same luck as I. > > Dennis in Eastexas > " It's not Rocket Surgery " > > [ ] Hi...I am new here. I was just diagnosed with R.A. > > > > Hi, > > I am 34 years old and just found out last week that I have R.A. > > I am having a hard time with it. My Family Doc...took two weeks to get > > my blood work back.... > > I feel like crap and everyone thinks I am crazy. I am fine some days > > and others I wake up and can not walk. > > My husband thinks it is all in my head, blames me being overweight, and > > for drinking Coke and says that it what is causing my pain. > > I had my first appointment with a Rheumatoligist and felt much better > > when I talked to him. I am on 800 mg of Advil and some days feel > > better. > > My pain started in sept, and was in my shoulders. Now my knees are the > > worst and my toes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Although for the most part I have an very understanding husband and family, I think that I have started talking less about my pain and discomfort. Its been a year since the onset of my RA. I have been happily married for 20 years and we have two healthy grown sons. I can count on one hand the amount of times that my husband has been ill. I have worked hard and prayed more than I care to mention not to have resentment that I have been the sick one in our marriage, lol. That is what is so great about this support system here, we can voice our pain, stress, etc. and get understanding and support from others who know our pain. Thanks to all of you for allowing me to say thanks for your support and for all the great infomration that you all share. May 2007 be a great year for advances in RA and may our pain be less this year!!!!! Patti (Chicago) " Taking it one day at a time! " kitt021355 <kitt021355@...> wrote: Hi there, and thanks for the words of support. Sometimes I just wish Joe would put his arms around me and tell me he loves me and offer some words of comfort, Instead, what I get from him is nearly constant fighting over this and that, he refuses to help around the house, he won't even pick up his clothes, where he drops them on the floor, and everything wrong in our life is MY fault. We live in the same place, but our paths rarely cross any more. I tell him I have to go to the RA doctor, (I rarely am well enough to drive) yet, he will do something to make it impossible for me to go to the dr, like taking off to go somewhere and not getting back in time.....sometimes its like he goes out ofhis way to cause me problems, but then when I do not get my shot and my pain comes back bad, he tells me its my fault that I shold have gone to get my shot....and i tell him he was not home for me to go and thus ensues an argument. I am tired, and annoyed and would rather live alone than to go through this. Three years now. Kitt > > I think most of us have dealt with " it's all in your head " . My own wife had > that attitude for a long time because she couldn't see any physical > difference. My older sister still says that to me after 17 years of > suffering the same fate as our mother, and she still thinks 'it's all in our > heads' even after her own daughter was suffering Fibro and some RA, and was > found dead one morning with a needle in her arm. > > It takes time and some cooperation for the family unit to succeed is > handling the effects of RA on the family. Sometimes it never happens and the > family is broken up simply because you can't do the things you did before > 'for no obvious' reason. I was lucky because we have been married since 1964 > and are still on our honeymoon. I hope you and Kitt and the rest with this > family problem have the same luck as I. > > Dennis in Eastexas > " It's not Rocket Surgery " > > [ ] Hi...I am new here. I was just diagnosed with R.A. > > > > Hi, > > I am 34 years old and just found out last week that I have R.A. > > I am having a hard time with it. My Family Doc...took two weeks to get > > my blood work back.... > > I feel like crap and everyone thinks I am crazy. I am fine some days > > and others I wake up and can not walk. > > My husband thinks it is all in my head, blames me being overweight, and > > for drinking Coke and says that it what is causing my pain. > > I had my first appointment with a Rheumatoligist and felt much better > > when I talked to him. I am on 800 mg of Advil and some days feel > > better. > > My pain started in sept, and was in my shoulders. Now my knees are the > > worst and my toes. > --------------------------------- Looking for earth-friendly autos? Browse Top Cars by " Green Rating " at Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Goodness, Kitt, if it's that bad, the stress and depresssion are making things much worse for you. My opinion is that if he's not helping at all and causing trouble for you on purpose, it's time to make a change in your life, starting with entertaining a move. I'm not an advocate of divorce, it's getting too easy today, but sometimes you have to draw the line. If he can't understand and try to care about you, you have to do something to help yourself. Antidepressants help some, and with the pain in your body, it makes all your problems 10 times greater. A nice, soothing vacation by yourself or with someone that will help you will show you the difference peace can make with this disease and the discomfort from it. We'll pray for you and your husband and hope it helps. Dennis in Eastexas " It's not Rocket Surgery " [ ] to Dennis > Hi there, and thanks for the words of support. Sometimes I just wish > Joe would put his arms around me and tell me he loves me and offer > some words of comfort, Instead, what I get from him is nearly > constant fighting over this and that, he refuses to help around the > house, he won't even pick up his clothes, where he drops them on the > floor, and everything wrong in our life is MY fault. We live in the > same place, but our paths rarely cross any more. I tell him I have > to go to the RA doctor, (I rarely am well enough to drive) yet, he > will do something to make it impossible for me to go to the dr, like > taking off to go somewhere and not getting back in > time.....sometimes its like he goes out ofhis way to cause me > problems, but then when I do not get my shot and my pain comes back > bad, he tells me its my fault that I shold have gone to get my > shot....and i tell him he was not home for me to go and thus ensues > an argument. I am tired, and annoyed and would rather live alone > than to go through this. Three years now. > Kitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Kitt, Sounds like you hubby is in big time denial!!!!!! He may also feel insecure because he feels he has lost his mate. We all know, but do not talk about it, but most people have changes in intimacy as a result of RA from where they were before they get sick, to the extreme of NO sex at all. He many also feel insecure because men are generally fixers. If you are sick you get a pill or a shot, its done fixed and life should be back to normal. He can not fix you or make life return to normal. I would take him to the doc with you and discuss his behavior with him present and get the docs advice with him in the room...some people need a wake-up call. If he refuses to go trick him. Tell him you need to go and pick up something and see if he will go in with you. Then get him in the back to talk to the doc. As far as his behavior is concerned. He would live in pigsty. I would not pick up the clothing or do the cleaning if he is intentionally making messes. I would only take care of me. I would also let him know there will be NO arguments on this issue. You help, or you are on your own buddy!! When he has NO food to eat and no clean clothes to put on his behind he will straighten up. Then if he offers to learn to do help out, do chores work the washer and such make sure you coach him, praise him and most importantly get him well trained!! Mine is well trained he can do just about everything in the house that I can and he does when I am not feeling well. As far as going to the doc...you need to get a support system. If you are on SSDI or SSI you many qualify for state sponsored transportation. Or arrange for a friend to take you and make it a social event. Take a taxi...I would ask Joe for money that you know he will give you and save it for the taxi if he is also controlling the finances. Either way I would not depend on him. When he sees that he can not hurt you in that way it usually stops. Right now he is enjoying hurting you and then blaming you when he makes it worst...because he knows you are nothing going to do anything. He is effectively punishing you like a small child!! I don't know what meds you are on or what shot you are getting but if its MTX, Humira or Enbrel or one that you can self inject. Learn to do it yourself as well as teach your kids and a few close friends...that also will make you independent!!! If none of this makes the situation better...start looking of 1-2 bedroom disabled apt that you can afford in your area or near your doc...move out and leave this person. You are better off alone than with someone that is so negative...divorce is the next step. Good luck Toni Posted by: " kitt021355 " _kitt021355@... _ (mailto:kitt021355@...?Subject= Re:to%20Dennis) _kitt021355 _ (kitt021355) Thu Jan 18, 2007 5:46 pm (PST) Hi there, and thanks for the words of support. Sometimes I just wish Joe would put his arms around me and tell me he loves me and offer some words of comfort, Instead, what I get from him is nearly constant fighting over this and that, he refuses to help around the house, he won't even pick up his clothes, where he drops them on the floor, and everything wrong in our life is MY fault. We live in the same place, but our paths rarely cross any more. I tell him I have to go to the RA doctor, (I rarely am well enough to drive) yet, he will do something to make it impossible for me to go to the dr, like taking off to go somewhere and not getting back in time.....sometimes its like he goes out ofhis way to cause me problems, but then when I do not get my shot and my pain comes back bad, he tells me its my fault that I shold have gone to get my shot....and i tell him he was not home for me to go and thus ensues an argument. I am tired, and annoyed and would rather live alone than to go through this. Three years now. Kitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Could you leave for a few days and go somewhere? Maybe a little distance would make his heart grow fonder. I have some of the same problems with my dh. He can be so uncaring and cold. I wish he could experience just one day with the pain we live in daily. Recently he went in for a cavity and his face was a little swollen. He was like, " please go get me an ice pack...whaa.. your not taking care of me. " I pulled back the covers and showed him my feet and hands and was like I live with this 24/7 and don't get much compassion from you. I know when I married him I didn't have this condition but I can't see myself treating him like that if he had gotten sick. I hope your hubby comes around soon! Joy kitt021355 <kitt021355@...> wrote: Hi there, and thanks for the words of support. Sometimes I just wish Joe would put his arms around me and tell me he loves me and offer some words of comfort, Instead, what I get from him is nearly constant fighting over this and that, he refuses to help around the house, he won't even pick up his clothes, where he drops them on the floor, and everything wrong in our life is MY fault. We live in the same place, but our paths rarely cross any more. I tell him I have to go to the RA doctor, (I rarely am well enough to drive) yet, he will do something to make it impossible for me to go to the dr, like taking off to go somewhere and not getting back in time.....sometimes its like he goes out ofhis way to cause me problems, but then when I do not get my shot and my pain comes back bad, he tells me its my fault that I shold have gone to get my shot....and i tell him he was not home for me to go and thus ensues an argument. I am tired, and annoyed and would rather live alone than to go through this. Three years now. Kitt > > I think most of us have dealt with " it's all in your head " . My own wife had > that attitude for a long time because she couldn't see any physical > difference. My older sister still says that to me after 17 years of > suffering the same fate as our mother, and she still thinks 'it's all in our > heads' even after her own daughter was suffering Fibro and some RA, and was > found dead one morning with a needle in her arm. > > It takes time and some cooperation for the family unit to succeed is > handling the effects of RA on the family. Sometimes it never happens and the > family is broken up simply because you can't do the things you did before > 'for no obvious' reason. I was lucky because we have been married since 1964 > and are still on our honeymoon. I hope you and Kitt and the rest with this > family problem have the same luck as I. > > Dennis in Eastexas > " It's not Rocket Surgery " > > [ ] Hi...I am new here. I was just diagnosed with R.A. > > > > Hi, > > I am 34 years old and just found out last week that I have R.A. > > I am having a hard time with it. My Family Doc...took two weeks to get > > my blood work back.... > > I feel like crap and everyone thinks I am crazy. I am fine some days > > and others I wake up and can not walk. > > My husband thinks it is all in my head, blames me being overweight, and > > for drinking Coke and says that it what is causing my pain. > > I had my first appointment with a Rheumatoligist and felt much better > > when I talked to him. I am on 800 mg of Advil and some days feel > > better. > > My pain started in sept, and was in my shoulders. Now my knees are the > > worst and my toes. > Joy ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Visit Joy's Homepage and Reading Room! http://jhoormann-ivil.tripod.com Come see My Dog Salsa! http://www.geocities.com/jhoorm01/Salsa.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Joe and I are not married. We are, or were best friends. There is not even that between us any more. Moving is a way out but both of us signed the lease (two can live cheaper than one) so he won't leave, and right now I can't afford to. Its hard enough to be in so much pain and loose your independance, let alone deal with those around you and their resentment. Iknow that the stress is not good for me, and so I have been praying about my situation, and I know that with out God in my life and my heart, my pain would be much more worse. I was having a particulary " bad " day a couple of months ago, and I was praying, not for the pain to go away so much, but for a little relief from it and believe it or not, my pain subsided to tolerable for abotu a week. I have always been a very independant woman, and having to have help with getting my clothes on, getting up in the morning, getting in and out of a chair, cutting my food, opening a can of soda (I have found a way to do this on my own, I put a butter knife under the tab and lift up....it works) it all makes the depression worse. I hate the fact that I have to ask others for help. The other day in walmart, I was riding my little cart around and got thirsty so I got a soda out of the vending machine, and could nto open it....I had to ask a total stranger to help me, he did, he was very sweet about it and all I could think of was why could Joe not be like that, instead of letting out a deep breath, and shaking his head. I do want to take a small vacation, alone, and have this planned, but have to wait til it warms up, can't afford to get snowed in somewhere, and here in the winter is snow time. thanks for your support, Kitt > > Goodness, Kitt, if it's that bad, the stress and depresssion are making > things much worse for you. My opinion is that if he's not helping at all and > causing trouble for you on purpose, it's time to make a change in your life, > starting with entertaining a move. I'm not an advocate of divorce, it's > getting too easy today, but sometimes you have to draw the line. If he can't > understand and try to care about you, you have to do something to help > yourself. Antidepressants help some, and with the pain in your body, it > makes all your problems 10 times greater. A nice, soothing vacation by > yourself or with someone that will help you will show you the difference > peace can make with this disease and the discomfort from it. We'll pray for > you and your husband and hope it helps. > > Dennis in Eastexas > " It's not Rocket Surgery " > > [ ] to Dennis > > > > Hi there, and thanks for the words of support. Sometimes I just wish > > Joe would put his arms around me and tell me he loves me and offer > > some words of comfort, Instead, what I get from him is nearly > > constant fighting over this and that, he refuses to help around the > > house, he won't even pick up his clothes, where he drops them on the > > floor, and everything wrong in our life is MY fault. We live in the > > same place, but our paths rarely cross any more. I tell him I have > > to go to the RA doctor, (I rarely am well enough to drive) yet, he > > will do something to make it impossible for me to go to the dr, like > > taking off to go somewhere and not getting back in > > time.....sometimes its like he goes out ofhis way to cause me > > problems, but then when I do not get my shot and my pain comes back > > bad, he tells me its my fault that I shold have gone to get my > > shot....and i tell him he was not home for me to go and thus ensues > > an argument. I am tired, and annoyed and would rather live alone > > than to go through this. Three years now. > > Kitt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 My opinion of marriage has nothing to do with paying for a piece of paper that was dreamed up by politicians to raise money. It's all in the heart and soul. And it's very important to be 'best friends'. That's how Betty and I lasted for almost 43 years. We had a rough time (for us, anyhow) when I first became disabled by the RA because she couldn't 'see' it to be a problem. When she finally accepted it after about a year, she could tell how I felt just by hearing my voice. Now, she has difficulties that don't show, and I occasionally catch myself thinking, " why would she need help doing that? " . It's born into us, I guess, but I immediately dismiss that thought and do all I can to help her. You and Joe had something before, and since it takes two to have an argument, you might look into yourself and see how you respond to his hurtful actions or words. When I realized my actions and reactions, I sat down and talked with Betty about it and explained that we both need to be more tolerant because of this problem I'm having, and it set us on the road to full recovery in our relationship. It's worth a try to talk with him and explain how the RA affects your attitude and causes deep depression that causes you to react rather than respond. Maybe he can start to see what's happening, he's ignorant of the way it works, also. Your independence is another thing that makes things rough for you two. I was that way, also, and wouldn't take the answer of 'you can't do it' because I've always been able to do it no matter what. Now, if it gets done, that's good. If it doesn't, that's ok, too. It might take me 2 weeks to do a 2 hour job, but that's ok now, too. Get used to it, it will help. Good luck. Dennis in Eastexas " It's not Rocket Surgery " [ ] Re: to Dennis > Joe and I are not married. We are, or were best friends. There is > not even that between us any more. Moving is a way out but both of > us signed the lease (two can live cheaper than one) so he won't > leave, and right now I can't afford to. Its hard enough to be in so > much pain and loose your independance, let alone deal with those > around you and their resentment. Iknow that the stress is not good > for me, and so I have been praying about my situation, and I know > that with out God in my life and my heart, my pain would be much > more worse. > > I was having a particulary " bad " day a couple of months ago, and I > was praying, not for the pain to go away so much, but for a little > relief from it and believe it or not, my pain subsided to tolerable > for abotu a week. > > I have always been a very independant woman, and having to have help > with getting my clothes on, getting up in the morning, getting in > and out of a chair, cutting my food, opening a can of soda (I have > found a way to do this on my own, I put a butter knife under the tab > and lift up....it works) it all makes the depression worse. I hate > the fact that I have to ask others for help. The other day in > walmart, I was riding my little cart around and got thirsty so I got > a soda out of the vending machine, and could nto open it....I had to > ask a total stranger to help me, he did, he was very sweet about it > and all I could think of was why could Joe not be like that, instead > of letting out a deep breath, and shaking his head. > > I do want to take a small vacation, alone, and have this planned, > but have to wait til it warms up, can't afford to get snowed in > somewhere, and here in the winter is snow time. > > thanks for your support, Kitt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Dennis, I googled and found this information about weaning from prednisone. It was written for sarcoidosis patients, but should work for anyone who has been on prednisone for a long time. It explains why it's so hard to get off of it. As said, stopping the drug abruptly can be dangerous. This article tells some of the symptoms that can occur as you taper down. Sue " Most patients are told to take the entire day's dose of Prednisone in the morning. But the half-life of prednisone in the bloodstream is only 4 hours. Dividing the daily dose in half and taking one-half in the morning and one-half in the late afternoon (not at bedtime to avoid disrupting sleep) may alleviate some withdrawal symptoms. Weaning from a high dose of prednisone to a moderate dose can be accomplished fairly quickly and safely. If symptoms allow, it is suggested that every two weeks the total daily dose be reduced by half until 20mg per day is reached. At 20mg per day, the body (adrenal cortex) must begin to produce it s own cortisol again and the weaning process needs to go slower to minimize withdrawal symptoms and to avoid dangerous repercussions related to a lack of natural cortisol. Begin your reductions now with the PM dose, keeping the morning dose the same. Ask your doctor for a variety of tablet sizes to facilitate the fractional dosing weaning process. The following schedule should allow for the safe return of adrenal cortex functioning: You are now taking 10mg in the morning and 10mg in the late afternoon. Every 5-7 days, decrease the PM dose by 2.5mg. When the PM dose is zero, divide the morning dose in half again (you will be taking 5mg in the morning and 5mg in the late afternoon) and continue decreasing the PM dose by 2.5mg every 5-7 days until you have reached 5mg per day. When you have reached this milestone of 5mg per day, you must proceed more slowly. At this point you need your own adrenal glands to be producing natural cortisol, as the prednisone tablets no longer are providing enough corticosteroid to keep your body functioning properly. At 5mg per day, it is usually advisable to reduce by only ½ mg at a time, remaining at each new dose level for periods up to a month if symptoms dictate. Take 2.5mg in the morning and 2.5mg in the PM. Decrease the PM dose by ½ mg. every one to four weeks, depending on symptoms. When the PM dose is zero, split the morning dose in half again and continue decreasing the PM dose by ½ mg. as symptoms allow. Repeat the process until you aren't taking any prednisone. If prednisone is decreased too quickly below 15mg per day, the adrenal glands may not begin making their own hormones again fast enough to meet the body's needs, and symptoms of adrenal insufficiency can result. This is especially true if you have taken prednisone for a very long time. Doc can measure the cortisol in your blood to make sure your own body has started to manufacture cortisol again. The symptoms of adrenal insufficiency which can occur during this last phase of the weaning process (below 15mg) are nausea and vomiting, anorexia, extreme fatigue, muscle pain, lethargy, dizziness, shortness of breath, weakness, joint pain and positional hypotension (low blood pressure). Some of these symptoms may be similar to your sarcoidosis symptoms. If you have these symptoms and are concerned that they might be due to adrenal insufficiency, you can ask your doctor to do tests.. In an emergency, your doctor can also stimulate the adrenal glands with an ACTH injection, if necessary. Some patients who have weaned from prednisone report that they continue to experience the side effects of steroid therapy, such as anxiety, depression and irritability for weeks or months following treatment so give yourself time to adjust. " http://www.sarcinfo.com/weaning.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Sue, you done good! I didn't know about the 'take in the morning', and split my doses between morning and evening. The instructions I was given by the Rheumy's office was to cut down every 2 weeks by 1 mg, and that's all. The last few days I've been taking 1 or 2 mg some days, so I'll start taking them in the am only. That sounds like the best thing. And, my Rheumy is all for my plan even though I'm making it up a I go along. He's been my Rheumy for almost 20 years and trusts me to do the right thing with my meds. I think I'll be completely off them by the end of Sept, won't that be great!! Dennis in eastexas On Thu, Aug 14, 2008 at 4:44 PM, Sue <marysue@...> wrote: > Dennis, > > I googled and found this information about weaning from prednisone. It > was written for sarcoidosis patients, but should work for anyone who > has been on prednisone for a long time. It explains why it's so hard > to get off of it. As said, stopping the drug abruptly can be > dangerous. This article tells some of the symptoms that can occur as > you taper down. > > Sue > > " Most patients are told to take the entire day's dose of Prednisone in > the morning. But the half-life of prednisone in the bloodstream is only > 4 hours. Dividing the daily dose in half and taking one-half in the > morning and one-half in the late afternoon (not at bedtime to avoid > disrupting sleep) may alleviate some withdrawal symptoms. > > Weaning from a high dose of prednisone to a moderate dose can be > accomplished fairly quickly and safely. If symptoms allow, it is > suggested that every two weeks the total daily dose be reduced by half > until 20mg per day is reached. > > At 20mg per day, the body (adrenal cortex) must begin to produce it s > own cortisol again and the weaning process needs to go slower to > minimize withdrawal symptoms and to avoid dangerous repercussions > related to a lack of natural cortisol. Begin your reductions now with > the PM dose, keeping the morning dose the same. Ask your doctor for a > variety of tablet sizes to facilitate the fractional dosing weaning > process. > > The following schedule should allow for the safe return of adrenal > cortex functioning: > > You are now taking 10mg in the morning and 10mg in the late afternoon. > > Every 5-7 days, decrease the PM dose by 2.5mg. When the PM dose is > zero, divide the morning dose in half again (you will be taking 5mg in > the morning and 5mg in the late afternoon) and continue decreasing the > PM dose by 2.5mg every 5-7 days until you have reached 5mg per day. > > When you have reached this milestone of 5mg per day, you must proceed > more slowly. At this point you need your own adrenal glands to be > producing natural cortisol, as the prednisone tablets no longer are > providing enough corticosteroid to keep your body functioning properly. > > At 5mg per day, it is usually advisable to reduce by only ½ mg at a > time, remaining at each new dose level for periods up to a month if > symptoms dictate. > > Take 2.5mg in the morning and 2.5mg in the PM. Decrease the PM dose by > ½ mg. every one to four weeks, depending on symptoms. When the PM dose > is zero, split the morning dose in half again and continue decreasing > the PM dose by ½ mg. as symptoms allow. Repeat the process until you > aren't taking any prednisone. > > If prednisone is decreased too quickly below 15mg per day, the adrenal > glands may not begin making their own hormones again fast enough to > meet the body's needs, and symptoms of adrenal insufficiency can > result. This is especially true if you have taken prednisone for a very > long time. Doc can measure the cortisol in your blood to make sure your > own body has started to manufacture cortisol again. > > The symptoms of adrenal insufficiency which can occur during this last > phase of the weaning process (below 15mg) are nausea and vomiting, > anorexia, extreme fatigue, muscle pain, lethargy, dizziness, shortness > of breath, weakness, joint pain and positional hypotension (low blood > pressure). Some of these symptoms may be similar to your sarcoidosis > symptoms. If you have these symptoms and are concerned that they might > be due to adrenal insufficiency, you can ask your doctor to do tests.. > In an emergency, your doctor can also stimulate the adrenal glands with > an ACTH injection, if necessary. > > Some patients who have weaned from prednisone report that they continue > to experience the side effects of steroid therapy, such as anxiety, > depression and irritability for weeks or months following treatment so > give yourself time to adjust. " > > http://www.sarcinfo.com/weaning.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Dennis, I thought that was a very good article that might help you. I forget your dosage but do remember you saying that you'd been on it a long time. If you can get off of it, it will be a great accomplishment. I wish you all of the luck in the world and hope that you'll be successful. By the way, how is that foot? Sue On Friday, August 15, 2008, at 01:44 PM, Dennis W wrote: > Sue, you done good! I didn't know about the 'take in the morning', and > split > my doses between morning and evening. The instructions I was given by > the > Rheumy's office was to cut down every 2 weeks by 1 mg, and that's all. > The > last few days I've been taking 1 or 2 mg some days, so I'll start > taking > them in the am only. That sounds like the best thing. And, my Rheumy > is all > for my plan even though I'm making it up a I go along. He's been my > Rheumy > for almost 20 years and trusts me to do the right thing with my meds. I > think I'll be completely off them by the end of Sept, won't that be > great!! > > Dennis in eastexas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Dennis, diabetics sometimes have sores or wounds that won't heal. Prednisone has been known to give some people diabetes. Have you been checked for it? Just a fasting blood test can give them some indication sometimes. I certainly don't want you to have another disease; but if you do, I want you to get treatment for it. I had diabetes for years before I was diagnosed, so I know that doctors sometimes don't do a good job of diagnosing it. Sue On Monday, August 25, 2008, at 05:00 PM, Dennis W wrote: > Clora, your experience at this time has shown me of my experience of > this > morning. I went to a " wound specialist " at the hospital to check the > sores > that were not healing, and during our checkup, had looked at some itchy > spots below my ears, one that was there for a few years and the other > just > recently. Since her husband has skin cancer, she suggested I get them > looked > at by a dermatologist! Another one to be concerned about.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Sue, that's a good shot, but you missed. Since my wife has Type 2 and checks hers regularly, we check mine at least once a week so I know mine is normal. Last month, I had a fasting test for the usual ones and added cholesterol and sugars, etc, and all tests were good. Thanks for the idea anyhow, Dennis in eastexas On Mon, Aug 25, 2008 at 4:39 PM, Sue <marysue@...> wrote: > Dennis, diabetics sometimes have sores or wounds that won't heal. > Prednisone has been known to give some people diabetes. Have you been > checked for it? Just a fasting blood test can give them some indication > sometimes. I certainly don't want you to have another disease; but if > you do, I want you to get treatment for it. I had diabetes for years > before I was diagnosed, so I know that doctors sometimes don't do a > good job of diagnosing it. > > Sue > > On Monday, August 25, 2008, at 05:00 PM, Dennis W wrote: > > > Clora, your experience at this time has shown me of my experience of > > this > > morning. I went to a " wound specialist " at the hospital to check the > > sores > > that were not healing, and during our checkup, had looked at some itchy > > spots below my ears, one that was there for a few years and the other > > just > > recently. Since her husband has skin cancer, she suggested I get them > > looked > > at by a dermatologist! Another one to be concerned about.. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 I'm glad I missed, Dennis, LOL. It's good that you and your doctor are being vigilant. Sue On Monday, August 25, 2008, at 05:52 PM, Dennis W wrote: > Sue, that's a good shot, but you missed. Since my wife has Type 2 and > checks > hers regularly, we check mine at least once a week so I know mine is > normal. > Last month, I had a fasting test for the usual ones and added > cholesterol > and sugars, etc, and all tests were good. Thanks for the idea anyhow, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Dennis: I wish you success cutting down on your Pred. I am also hoping you will have great success as you re-introduce your RA meds. I am so glad that you are posting again, and doing good. I missed you!  Hugs,  Barbara > > > In a message dated 1/24/2010 4:07:57 P.M. Central Standard Time, > stephdenicola@... <stephdenicola%40> writes: > > I started Remicade in March 2000 and have been in a medication-induced > remission ever since. My only meds now are 500mg of Remicade every 6 weeks > by > IV, 800mcg of folic acid a day & 4 > baby aspirin a day. >> > > I'm curious why you still take folic acid. I was taking it when on > Methotrexate, but I think I was told I didn't need to anymore when I quit > it. > Maybe that was a mistake? > > dd > > Quote Link to comment Share on other sites More sharing options...
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