Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Quite a few of us on the site have decided that " Quality " of life is the important part. I tried to get off Prednisone and was unsuccessful, so I'm going to continue taking an 10 mg each day and more if I need it, like now with the Sciatic nerve problem. It helps get the inflammation under control in a matter of days and I drop back to 10 mg again, and live life for a while longer. Dennis in Eastexas " You can't always fix it with money " Re: [ ] Hello Seycon > Thank you for all your encouraging words. They are helpful. I have done > all the biologicals with no success or prolong periods of infections. > Rhemmy says no way of trying anymore. I try doing tapering doses of > prednisone, but am battling the question of low dose or no prednisone > equals days in bed or extreme pain, or do I enjoy life with prednisone and > deal with the effects as they come? > > Keep hoping that the next great treatment is on the way--or at least I > can say I tried it all. Truly starting to believe quality is better then > quanity. > > I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a > wonderful year old grandson. My oldest daughter, was diagnosed with > Myasenthia Gravis 2 years ago, so always keeping up a brave front for her, > so she will fight her auto-immune disease to the fullest. Carry huge > guilt over the likelihood that I passed the susecptibility on to her. > > I am currently moving to a vegan lifestyle hoping this will do some > good--anyone use any other natural " medicine " ? > > Well hope I didn't come off as a whiner, try to keep my pity parties to a > minimum. > > Please take care--Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 , if you want to get lower on Prednisone, you'll have to go to about 6.5 for a while, and drop much more slowly. 7.5 to 5 is a big jump for your system to try to make up for. I found that out the hard way when I tried to get off Prednisone. I have been taking 10 mg for years and dropped gradually down to 6 mg. When I hit that number, my body started telling me I went too far, and made me almost immobile. I'm back at 10 mg and a happy camper, in that respect. I fell again today and further damaged my L5-S1 because both hips are in terrible pain. I'm going to have to use this chair a lot more than I thought. I'll either have to quit walking or start drinking so I'll have a better excuse for the falls. Dennis in Eastexas " You can't always fix it with money " Re: [ ] Hello Seycon > >> Thank you for all your encouraging words. They are helpful. I have done >> all the biologicals with no success or prolong periods of infections. >> Rhemmy says no way of trying anymore. I try doing tapering doses of >> prednisone, but am battling the question of low dose or no prednisone >> equals days in bed or extreme pain, or do I enjoy life with prednisone >> and >> deal with the effects as they come? >> >> Keep hoping that the next great treatment is on the way--or at least I >> can say I tried it all. Truly starting to believe quality is better then >> quanity. >> >> I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a >> wonderful year old grandson. My oldest daughter, was diagnosed with >> Myasenthia Gravis 2 years ago, so always keeping up a brave front for >> her, >> so she will fight her auto-immune disease to the fullest. Carry huge >> guilt over the likelihood that I passed the susecptibility on to her. >> >> I am currently moving to a vegan lifestyle hoping this will do some >> good--anyone use any other natural " medicine " ? >> >> Well hope I didn't come off as a whiner, try to keep my pity parties to a >> minimum. >> >> Please take care--Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 I have just started to decrease my 5 mg Prednisone. First month gets me down to 4 mg and I stay there for a month, then start decreasing the third month. If I start flaring then I go right back to 5 mg for a month and start over again. My rheumy wants me to go very, very slowly. The prednisone has caused me a lot of problems, the worst one, my skin is like tissue paper and I am covered with bruises. However, it is a drug that has helped get me from being bedridden back to teaching. Hugs June Re: [ ] Hello Seycon > >> Thank you for all your encouraging words. They are helpful. I have done >> all the biologicals with no success or prolong periods of infections. >> Rhemmy says no way of trying anymore. I try doing tapering doses of >> prednisone, but am battling the question of low dose or no prednisone >> equals days in bed or extreme pain, or do I enjoy life with prednisone >> and >> deal with the effects as they come? >> >> Keep hoping that the next great treatment is on the way--or at least I >> can say I tried it all. Truly starting to believe quality is better then >> quanity. >> >> I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a >> wonderful year old grandson. My oldest daughter, was diagnosed with >> Myasenthia Gravis 2 years ago, so always keeping up a brave front for >> her, >> so she will fight her auto-immune disease to the fullest. Carry huge >> guilt over the likelihood that I passed the susecptibility on to her. >> >> I am currently moving to a vegan lifestyle hoping this will do some >> good--anyone use any other natural " medicine " ? >> >> Well hope I didn't come off as a whiner, try to keep my pity parties to a >> minimum. >> >> Please take care--Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hi June; I was not aware that there was a connection between prednisone and bruises. Are you also taking another med that might be the culprit? Good luck. June Dixon <juner24@...> wrote: I have just started to decrease my 5 mg Prednisone. First month gets me down to 4 mg and I stay there for a month, then start decreasing the third month. If I start flaring then I go right back to 5 mg for a month and start over again. My rheumy wants me to go very, very slowly. The prednisone has caused me a lot of problems, the worst one, my skin is like tissue paper and I am covered with bruises. However, it is a drug that has helped get me from being bedridden back to teaching. Hugs June Re: [ ] Hello Seycon > >> Thank you for all your encouraging words. They are helpful. I have done >> all the biologicals with no success or prolong periods of infections. >> Rhemmy says no way of trying anymore. I try doing tapering doses of >> prednisone, but am battling the question of low dose or no prednisone >> equals days in bed or extreme pain, or do I enjoy life with prednisone >> and >> deal with the effects as they come? >> >> Keep hoping that the next great treatment is on the way--or at least I >> can say I tried it all. Truly starting to believe quality is better then >> quanity. >> >> I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a >> wonderful year old grandson. My oldest daughter, was diagnosed with >> Myasenthia Gravis 2 years ago, so always keeping up a brave front for >> her, >> so she will fight her auto-immune disease to the fullest. Carry huge >> guilt over the likelihood that I passed the susecptibility on to her. >> >> I am currently moving to a vegan lifestyle hoping this will do some >> good--anyone use any other natural " medicine " ? >> >> Well hope I didn't come off as a whiner, try to keep my pity parties to a >> minimum. >> >> Please take care--Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hi June, I just got off predisone after 9 years. They told me it would be very hard. What I did was I went down a 1/2 mg. every three weeks. I really didn't have a problem. It took a long time but I think it was the best way to do it., slowly. I keep it here for a flare, which I have had to use. Then I went right back off of it. I had so many problems because of the predisone. Good luck with decreasing it, just go slow. Lynn (memom) Re: [ ] Hello Seycon > > > >> Thank you for all your encouraging words. They are helpful. I have > done > >> all the biologicals with no success or prolong periods of infections. > >> Rhemmy says no way of trying anymore. I try doing tapering doses of > >> prednisone, but am battling the question of low dose or no prednisone > >> equals days in bed or extreme pain, or do I enjoy life with prednisone > >> and > >> deal with the effects as they come? > >> > >> Keep hoping that the next great treatment is on the way--or at least I > >> can say I tried it all. Truly starting to believe quality is better > then > >> quanity. > >> > >> I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a > >> wonderful year old grandson. My oldest daughter, was diagnosed with > >> Myasenthia Gravis 2 years ago, so always keeping up a brave front for > >> her, > >> so she will fight her auto-immune disease to the fullest. Carry huge > >> guilt over the likelihood that I passed the susecptibility on to her. > >> > >> I am currently moving to a vegan lifestyle hoping this will do some > >> good--anyone use any other natural " medicine " ? > >> > >> Well hope I didn't come off as a whiner, try to keep my pity parties > to a > >> minimum. > >> > >> Please take care--Debbie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 I myself take prednisone. Even though with all the side effects it has, it is all that is really helping me right now. I have gained weight. Alot of weight. I have never weighted as much as I do now. I even get very moody...mood swings I assume. I was slowly getting off of it but my RA doctor put me back on it when I had a major flare up this past week. Why is it that it seems as if prednisone is the only thing helping me? I am also on humara, methorexate, and folic acid of course. > > Quite a few of us on the site have decided that " Quality " of life > > is the > > important part. I tried to get off Prednisone and was unsuccessful, so I'm > > going to continue taking an 10 mg each day and more if I need it, like now > > with the Sciatic nerve problem. It helps get the inflammation under > > control > > in a matter of days and I drop back to 10 mg again, and live life for a > > while longer. > > > > Dennis in Eastexas > > " You can't always fix it with money " > > > > Re: [ ] Hello Seycon > > > >> Thank you for all your encouraging words. They are helpful. I have done > >> all the biologicals with no success or prolong periods of infections. > >> Rhemmy says no way of trying anymore. I try doing tapering doses of > >> prednisone, but am battling the question of low dose or no prednisone > >> equals days in bed or extreme pain, or do I enjoy life with prednisone > >> and > >> deal with the effects as they come? > >> > >> Keep hoping that the next great treatment is on the way--or at least I > >> can say I tried it all. Truly starting to believe quality is better then > >> quanity. > >> > >> I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a > >> wonderful year old grandson. My oldest daughter, was diagnosed with > >> Myasenthia Gravis 2 years ago, so always keeping up a brave front for > >> her, > >> so she will fight her auto-immune disease to the fullest. Carry huge > >> guilt over the likelihood that I passed the susecptibility on to her. > >> > >> I am currently moving to a vegan lifestyle hoping this will do some > >> good--anyone use any other natural " medicine " ? > >> > >> Well hope I didn't come off as a whiner, try to keep my pity parties to a > >> minimum. > >> > >> Please take care--Debbie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Greetings, I think that's understandable. We all are alike in many ways with this condition but no 2 people or circumstances are exactly alike at the same time. Meaning you have to do what's right for you. It would be nice to taper off the prednisone but if you can't, don't worry about it. I think most of this stuff applies to early on in the diagnosis anyway. Sure you can be helped years down the road but a lot of damage has been done leaving you having to rely on not so ideal choices like the need for my hips to be replaced. Ha! Best wishes to you all. God Bless. Ebony > > Quite a few of us on the site have decided that " Quality " of life is the > important part. I tried to get off Prednisone and was unsuccessful, so I'm > going to continue taking an 10 mg each day and more if I need it, like now > with the Sciatic nerve problem. It helps get the inflammation under control > in a matter of days and I drop back to 10 mg again, and live life for a > while longer. > > Dennis in Eastexas > " You can't always fix it with money " > > Re: [ ] Hello Seycon > > > > Thank you for all your encouraging words. They are helpful. I have done > > all the biologicals with no success or prolong periods of infections. > > Rhemmy says no way of trying anymore. I try doing tapering doses of > > prednisone, but am battling the question of low dose or no prednisone > > equals days in bed or extreme pain, or do I enjoy life with prednisone and > > deal with the effects as they come? > > > > Keep hoping that the next great treatment is on the way--or at least I > > can say I tried it all. Truly starting to believe quality is better then > > quanity. > > > > I am a single mom of three(for 18 years), now 22, 21, and 18. Plus a > > wonderful year old grandson. My oldest daughter, was diagnosed with > > Myasenthia Gravis 2 years ago, so always keeping up a brave front for her, > > so she will fight her auto-immune disease to the fullest. Carry huge > > guilt over the likelihood that I passed the susecptibility on to her. > > > > I am currently moving to a vegan lifestyle hoping this will do some > > good--anyone use any other natural " medicine " ? > > > > Well hope I didn't come off as a whiner, try to keep my pity parties to a > > minimum. > > > > Please take care--Debbie > Quote Link to comment Share on other sites More sharing options...
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