Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Nina, I must not have made myself clear. I do not mind having my liver and kidneys checked every 2 months at all. My doctor for some reason is leary of me taking anything but the prednisone. One of my other problems too is that I am overweight and trying very hard with exercise and diet to lose weight . The doctor told me my weight would also make my joints sore etc. so it is a double edged sword. I need to lose weight but the prednisone hinders that. I am all for helping myself but to be honest, the prednisone did not help me too much and i want to explore other avenues. My doctor doesnt want to do anything but give me the prednisone so it looks like I will be finding another doctor soon. I am very new to RA having only been diagnosed in November of 2004 and they are still not sure if I have Lupus. I am working my way into finding out all the information there is out there about the diesase. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Nina, I must not have made myself clear. I do not mind having my liver and kidneys checked every 2 months at all. My doctor for some reason is leary of me taking anything but the prednisone. One of my other problems too is that I am overweight and trying very hard with exercise and diet to lose weight . The doctor told me my weight would also make my joints sore etc. so it is a double edged sword. I need to lose weight but the prednisone hinders that. I am all for helping myself but to be honest, the prednisone did not help me too much and i want to explore other avenues. My doctor doesnt want to do anything but give me the prednisone so it looks like I will be finding another doctor soon. I am very new to RA having only been diagnosed in November of 2004 and they are still not sure if I have Lupus. I am working my way into finding out all the information there is out there about the diesase. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Nina, One more thing on the subject. Just because a Doctor prescribes something for us does not mean we have to take it. I feel that it is my body and I need to do what is best for me. I think too many people just allow their doctors to do what they want and do not question it. I feel it is my duty to myself to question why my doctor prescribes something for me, what the side effects are and an alternative if there is one out there. just my opinion. sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Nina, One more thing on the subject. Just because a Doctor prescribes something for us does not mean we have to take it. I feel that it is my body and I need to do what is best for me. I think too many people just allow their doctors to do what they want and do not question it. I feel it is my duty to myself to question why my doctor prescribes something for me, what the side effects are and an alternative if there is one out there. just my opinion. sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 ----- Original Message ----- From: slmcc93@... >Nina, One more thing on the subject. Just because a Doctor prescribes something for us does not mean we have to take it. I feel that it is my body and I need to do what is best for me. I think too many people just allow their doctors to do what they want and do not question it. I feel it is my duty to myself to question why my doctor prescribes something for me, what the side effects are and an alternative if there is one out there. I agree. It's every man (or woman) for himself out there in medical land. We have to do what we think is best for us at the time under the circumstances. I have done so much research on the various diseases and treatments that I am just about dizzy from it! I was diagnosed with Fibro, Sjogren's and PBC in 1999. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 ----- Original Message ----- From: slmcc93@... >Nina, One more thing on the subject. Just because a Doctor prescribes something for us does not mean we have to take it. I feel that it is my body and I need to do what is best for me. I think too many people just allow their doctors to do what they want and do not question it. I feel it is my duty to myself to question why my doctor prescribes something for me, what the side effects are and an alternative if there is one out there. I agree. It's every man (or woman) for himself out there in medical land. We have to do what we think is best for us at the time under the circumstances. I have done so much research on the various diseases and treatments that I am just about dizzy from it! I was diagnosed with Fibro, Sjogren's and PBC in 1999. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 ----- Original Message ----- From: slmcc93@... >Nina, I must not have made myself clear. I do not mind having my liver and kidneys checked every 2 months at all. I am very new to RA having only been diagnosed in November of 2004 and they are still not sure if I have Lupus. You said: " he was annoyed I went off the prednisone and refused some other treatments due to the fact that I would have to have my liver and kidneys checked every few months. " Which is why I was confused. I thought YOU refused the treatments and the tests, not the doc. I was also recently diagnosed with RA and they think I have Lupus, but are not sure. I also have Sjogren's Syndrome and Primary Biliary Cirrhosis, as well as Fibromyalgia and COPD. So I understand where you're coming from! Truly I do. I hope you find a doctor you like and a treatment that works for you. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 ----- Original Message ----- From: slmcc93@... >Nina, I must not have made myself clear. I do not mind having my liver and kidneys checked every 2 months at all. I am very new to RA having only been diagnosed in November of 2004 and they are still not sure if I have Lupus. You said: " he was annoyed I went off the prednisone and refused some other treatments due to the fact that I would have to have my liver and kidneys checked every few months. " Which is why I was confused. I thought YOU refused the treatments and the tests, not the doc. I was also recently diagnosed with RA and they think I have Lupus, but are not sure. I also have Sjogren's Syndrome and Primary Biliary Cirrhosis, as well as Fibromyalgia and COPD. So I understand where you're coming from! Truly I do. I hope you find a doctor you like and a treatment that works for you. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Yo Sandie, By all means dump that doc!!!!! It's so odd. Usually it is the doctor who wants you to come in all the time and you feel suspicious, wondering if you need to come that often. A doctor who thinks it's a nuisance to do bloodwork? That's just bizarre. Not to mention, that covers about every med that is currently in use and stops progression of the disease. And then he tells you to lose wait but wants you to stick to Prednisone? Comical! Maybe he's one of those gas station attendants masquerading as a doc! (and you can tell him I said so) Run don't walk ;-) But ya know, fun aside, maybe when are safely under the care of a good doc, it might be worth reporting him to your state board of medicine. It just doesn't make sense. Sharon > > Nina, > > I must not have made myself clear. I do not mind having my liver and kidneys > checked every 2 months at all. My doctor for some reason is leary of me taking > anything but the prednisone. One of my other problems too is that I am > overweight and trying very hard with exercise and diet to lose weight . The doctor > told me my weight would also make my joints sore etc. so it is a double edged > sword. I need to lose weight but the prednisone hinders that. I am all for > helping myself but to be honest, the prednisone did not help me too much and i > want to explore other avenues. My doctor doesnt want to do anything but give me > the prednisone so it looks like I will be finding another doctor soon. > I am very new to RA having only been diagnosed in November of 2004 and they > are still not sure if I have Lupus. I am working my way into finding out all > the information there is out there about the diesase. > > Sandie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Yo Sandie, By all means dump that doc!!!!! It's so odd. Usually it is the doctor who wants you to come in all the time and you feel suspicious, wondering if you need to come that often. A doctor who thinks it's a nuisance to do bloodwork? That's just bizarre. Not to mention, that covers about every med that is currently in use and stops progression of the disease. And then he tells you to lose wait but wants you to stick to Prednisone? Comical! Maybe he's one of those gas station attendants masquerading as a doc! (and you can tell him I said so) Run don't walk ;-) But ya know, fun aside, maybe when are safely under the care of a good doc, it might be worth reporting him to your state board of medicine. It just doesn't make sense. Sharon > > Nina, > > I must not have made myself clear. I do not mind having my liver and kidneys > checked every 2 months at all. My doctor for some reason is leary of me taking > anything but the prednisone. One of my other problems too is that I am > overweight and trying very hard with exercise and diet to lose weight . The doctor > told me my weight would also make my joints sore etc. so it is a double edged > sword. I need to lose weight but the prednisone hinders that. I am all for > helping myself but to be honest, the prednisone did not help me too much and i > want to explore other avenues. My doctor doesnt want to do anything but give me > the prednisone so it looks like I will be finding another doctor soon. > I am very new to RA having only been diagnosed in November of 2004 and they > are still not sure if I have Lupus. I am working my way into finding out all > the information there is out there about the diesase. > > Sandie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Sharon, Thanks for the laughs. I have to laugh at times otherwise I would be crying. I am on to searching for another doc. Hopefully I will be able to lose some weight now that Im off the pred. We will see. Thanks sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Sharon, Thanks for the laughs. I have to laugh at times otherwise I would be crying. I am on to searching for another doc. Hopefully I will be able to lose some weight now that Im off the pred. We will see. Thanks sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Hi : I am so sorry to hear that you are still having so much trouble getting the Prednisone lowered, and that you are miserable with pain. The nurse is right, sometimes people do stay on Prednisone lifelong because it gives them the quality of life they need, without it, they are in too much pain to be able to do what they want and need to do in their lives with their friends and family, hobbies (like riding Oliver), and just being able to be relatively painfree and active. I would hope that you will not have to stop at 15 mg. daily. You are right, most are at 5 mg or so, but the goal here is for quality of life. Yes, Prednisone does have other issues and baggage with it that would certainly be best to avoid, but those are the things you have to weigh in your own life versus quality of life. You are really between a rock and a hard place, my friend, and I am so sorry that you are not having more success in weaning off of Pred. Take it slowly, take it like you doctor is telling you, and hopefully in ten months you will be totally off of it. However, you might find that you need to have the Pred in your body to be able to do what you want to, to have that quality of life, and that is not a weakness or a failure, it is a reality. If you find you have to take Pred at some dose to have a quality of life, then do it, IMO. I would do what I had to in order to keep what I have now in my life. It's your choice in the end. I sure hope that you are able to get off the Pred entirely, but don't be hard on yourself if you cannot. Take care - prayers coming your way, my friend, Kathe in CA --- Randall <krandall@...> wrote: > Boy, it sounds like exactly what has been happening > to me! I was so > thrilled when the Embrel seemed to be really > helping, but as soon as > we started weaning the prednisone again, I started > having more > trouble. I went from 15mg, to 12.5 for a month > which was not TOO > bad, to now I've been on 10 for 3 weeks and am > absolutely miserable > still. > > The current plan is that after I've been on 10 for a > full month, I'm > supposed to start decreasing by just 1mg per month > from then on. > But if I never get on an even keel at 1mg, I'm > afraid of what a > further reduction will bring. > > I REALLY want to get off the prednisone. I haven't > been on it as > long as you have, but I've been on it since January, > and have gained > 25 pounds since then. I haven't had any other > serious problems from > it yet, but I don't want to get them either! > > OTOH, my quality of life right now is pretty > miserable, and at this > rate of reduction, it's going to take me 10 more > months to be off > the stuff. I'm not serious, and I know you can't do > this, but > sometimes I wish it were safe to just stop " cold > turkey " and get it > over with, even if it meant I was going to feel > REALLY terrible for > a couple of weeks! > > Then I was talking to my new " case manager " nurse > who is assigned by > my health care plan, and she told me that some > people have to take > prednisone indefinitely to control their RA, even > with other drugs. > I'd heard of that, but the people I'd heard of doing > that were > taking really small doses, like 2-5mg daily, not 15 > (which is where > I've been comfortable) She said that there are > people who end up > taking that much long term, that anything under 20mg > was > considered " low dose " , and that although it was best > not to need > any, when you were balancing quality of life vs. the > meds, sometimes > you just need to take the prednisone. > > So now I don't know what to think. > > > > > > > > > > > I haven't been able to keep up with my emails > for a > > > > while, just wanted to > > > > stop by and hi and hope everyone is doing > better. > > > > > > > > Once again, as soon as I started feeling > better, my > > > > rheumy decided it was > > > > time to adjust my meds. We're trying to wean > me off > > > > the prednisone, but > > > > every reduction means a few weeks of feeling > bad > > > > until my body gets > > > > adjusted. This time, he also took me off my > > > > Trazadone and lowered my > > > > Celexa. My eyes were dry enough that he > worried > > > > about a corneal abrasion, > > > > and felt that it might be those meds causing > it. My > > > > eyes are much better, > > > > but I just had my first good nights sleep in > over a > > > > month! I was taking the > > > > Trazadone for a sleep aid and for pain. This > is > > > > also the first day I have > > > > felt like doing anything normal. I've been > very > > > > tired, achy, and depressed > > > > - the fibro has taken over. Well, apathetic > and > > > > listless, not caring much > > > > about anything. And enveloped in the fibro > fog! > > > > > > > > This is the one group I feel like I can > explain my > > > > absence to, and be > > > > understood. thanks for being here, for all > the > > > > support. > > > > Gentle hugs, > > > > > > > > > > > > South Pasadena, CA > > > > See my galleries! - > http://www.pbase.com/arenared986 > > > > > > > > > > > > > > > > > > > -- > > > > South Pasadena, CA > > See my galleries! - > http://www.pbase.com/arenared986 > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Thanks, Kathe. I just don't see any other way other than toughing it out to even tell whether I really WILL need to stay on prednisone, or whether the problems I'm having are related directly to the withdrawl from prednisone. So I guess for the ime being, I just have to keep chipping away at it, no matter how I feel. I appreciate your support! > > > > > > > > > I haven't been able to keep up with my emails > > for a > > > > > while, just wanted to > > > > > stop by and hi and hope everyone is doing > > better. > > > > > > > > > > Once again, as soon as I started feeling > > better, my > > > > > rheumy decided it was > > > > > time to adjust my meds. We're trying to wean > > me off > > > > > the prednisone, but > > > > > every reduction means a few weeks of feeling > > bad > > > > > until my body gets > > > > > adjusted. This time, he also took me off my > > > > > Trazadone and lowered my > > > > > Celexa. My eyes were dry enough that he > > worried > > > > > about a corneal abrasion, > > > > > and felt that it might be those meds causing > > it. My > > > > > eyes are much better, > > > > > but I just had my first good nights sleep in > > over a > > > > > month! I was taking the > > > > > Trazadone for a sleep aid and for pain. This > > is > > > > > also the first day I have > > > > > felt like doing anything normal. I've been > > very > > > > > tired, achy, and depressed > > > > > - the fibro has taken over. Well, apathetic > > and > > > > > listless, not caring much > > > > > about anything. And enveloped in the fibro > > fog! > > > > > > > > > > This is the one group I feel like I can > > explain my > > > > > absence to, and be > > > > > understood. thanks for being here, for all > > the > > > > > support. > > > > > Gentle hugs, > > > > > > > > > > > > > > > South Pasadena, CA > > > > > See my galleries! - > > http://www.pbase.com/arenared986 > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > > > South Pasadena, CA > > > See my galleries! - > > http://www.pbase.com/arenared986 > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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