Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 I hope the doctors plan is perfect for Mike.Prednisone can make you cranky. Some people have symptoms when they lower the dose , so the docs usually try to do it slowly. If he feels cranky..make sure he tells the MD. Hang in there friends Liz NJ **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi there. Mike and Cath went to the specialist again and Mike's medication got changed to something with an " x " in it...I've heard other Stilligans mention this drug. Folic acid is to be taken with it as well. They now accept that the diagnosis is correct and understand that Mike is not in a 'flare' but in fact is just living with Stills. A remission can be hoped for, but for now he is on 10 mg of prednisone a day as well as the new drug. The specialist is going to wean him of the prednisone by going 10 mg one day and 7.5 the next and then back to 10 and so on. Every month the pattern will be reduced to lower amounts...and hopefully this strategy will take him right off of the prednisone. I have noticed (I went over last weekend) that Mike is handling stress a little better...and I was pleased to see that. Mike isn't willing to talk too much about Stills though as he does NOT want it to control his life/thoughts etc. He is really trying to live with an inconveniece and just get through each day without grumbling too much. Lucky for him he works 4 days on and 4 days off (12 hour days)...it allows him for rest before his next shift (the 4 on and 4 off thing). He used to take on extra shifts but those days are gone. He now looks forward to his rest days. Thanks for asking! I'll keep everyone posted about changes... Don't give up everyone... one day at a time...love, . Mike Thinking of you How is it going? Is the stills calming down yet? Or what ever it is Hope Thanksgiving was nice Thinking of you Liz NJ **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi there. Mike and Cath went to the specialist again and Mike's medication got changed to something with an " x " in it...I've heard other Stilligans mention this drug. Folic acid is to be taken with it as well. They now accept that the diagnosis is correct and understand that Mike is not in a 'flare' but in fact is just living with Stills. A remission can be hoped for, but for now he is on 10 mg of prednisone a day as well as the new drug. The specialist is going to wean him of the prednisone by going 10 mg one day and 7.5 the next and then back to 10 and so on. Every month the pattern will be reduced to lower amounts...and hopefully this strategy will take him right off of the prednisone. I have noticed (I went over last weekend) that Mike is handling stress a little better...and I was pleased to see that. Mike isn't willing to talk too much about Stills though as he does NOT want it to control his life/thoughts etc. He is really trying to live with an inconveniece and just get through each day without grumbling too much. Lucky for him he works 4 days on and 4 days off (12 hour days)...it allows him for rest before his next shift (the 4 on and 4 off thing). He used to take on extra shifts but those days are gone. He now looks forward to his rest days. Thanks for asking! I'll keep everyone posted about changes... Don't give up everyone... one day at a time...love, . Mike Thinking of you How is it going? Is the stills calming down yet? Or what ever it is Hope Thanksgiving was nice Thinking of you Liz NJ **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hi there. Mike and Cath went to the specialist again and Mike's medication got changed to something with an " x " in it...I've heard other Stilligans mention this drug. Folic acid is to be taken with it as well. They now accept that the diagnosis is correct and understand that Mike is not in a 'flare' but in fact is just living with Stills. A remission can be hoped for, but for now he is on 10 mg of prednisone a day as well as the new drug. The specialist is going to wean him of the prednisone by going 10 mg one day and 7.5 the next and then back to 10 and so on. Every month the pattern will be reduced to lower amounts...and hopefully this strategy will take him right off of the prednisone. I have noticed (I went over last weekend) that Mike is handling stress a little better...and I was pleased to see that. Mike isn't willing to talk too much about Stills though as he does NOT want it to control his life/thoughts etc. He is really trying to live with an inconveniece and just get through each day without grumbling too much. Lucky for him he works 4 days on and 4 days off (12 hour days)...it allows him for rest before his next shift (the 4 on and 4 off thing). He used to take on extra shifts but those days are gone. He now looks forward to his rest days. Thanks for asking! I'll keep everyone posted about changes... Don't give up everyone... one day at a time...love, . Mike Thinking of you How is it going? Is the stills calming down yet? Or what ever it is Hope Thanksgiving was nice Thinking of you Liz NJ **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008  Could Mike now be on MTX or Methotrexate ? I also take this and am off the predasion and have been for years. The way you describe the lowering of the predasion sounds right and is the way a lot of doctors do it. This is good to here. I do wish Mike was a bit more open to talking about it not so that it is all that is on his mind but so that he can get it off his mind and even get some answers and may be a fact or two that he can relate to. For us men it is deferent then it is for woman in ways and mentally is one of them I feel and that is coming from a man who was married and also a workaholic at the time I was DX with stills. I also had two kids this is also why I always say get some concealing be it for your self but also for the family because it dose change the family dynamics even when we like to say it will not or we will not let it. it is good he has time to rest as that is a big things with this rest that is but also some times over pushing to get to the rest days may not be a good thing but only Mike can know if that is being done . I wish you all the best and I also know at the start of this stills thing it is not easy and start I mean the first year or so and for some it can be longer some shorter but never is it so hard it is worth giving up as I once did. If he ever wants to talk to another male with this thing I am open to it here or my privet e mail just let him know Hugs to ya all *  the rednecks Marty & G. the redneck's my space http://www.myspace.com/martyg58  To learn about Stills Disease  http://www.stillsdisease.org/stills_info For conservitive minded people  http://www.americac2c.org " If  we ever forget that we're one nation under God, then we will be a nation gone  under. " ~ Reagan   In the old days a man who saved money was a miser; nowadays he's a wonder. ~Author Unknown   A nation can survive its fools and even the ambitious. But it cannot survive treason from within.~Cicero                                                    " The  most terrifying words in the English language are: I'm from the government  and I'm here to help. "    ~  Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 thanks, Marty. I think you are right about the medicine. ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I was just put on MTX too, , while they are trying to lower my prednisone. We went a bit too fast with lowering the prednisone, and I've been a mess, frankly. But at 4 weeks on the MTX, it seems to be kicking in a bit. Tell Mike to be patient with it. Then tell ME to be patient with it. lol Take care of you too, Mom. I think it's harder watching someone else hurting than it is to be hurting yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I was just put on MTX too, , while they are trying to lower my prednisone. We went a bit too fast with lowering the prednisone, and I've been a mess, frankly. But at 4 weeks on the MTX, it seems to be kicking in a bit. Tell Mike to be patient with it. Then tell ME to be patient with it. lol Take care of you too, Mom. I think it's harder watching someone else hurting than it is to be hurting yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I was just put on MTX too, , while they are trying to lower my prednisone. We went a bit too fast with lowering the prednisone, and I've been a mess, frankly. But at 4 weeks on the MTX, it seems to be kicking in a bit. Tell Mike to be patient with it. Then tell ME to be patient with it. lol Take care of you too, Mom. I think it's harder watching someone else hurting than it is to be hurting yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 When you say " kicking in a bit " ...what does that mean? Is the pain lessening? Are you able to take less prednisone without having major withdrawal?? thanks ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 When you say " kicking in a bit " ...what does that mean? Is the pain lessening? Are you able to take less prednisone without having major withdrawal?? thanks ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 When you say " kicking in a bit " ...what does that mean? Is the pain lessening? Are you able to take less prednisone without having major withdrawal?? thanks ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 I'm down to 20mg a day from 60 (or was it 80?) this past summer... I was down to 15mg for a few weeks, but it just hurt too much so we bumped it up again. They'll put me down again in a week when I visit the clinic again. My liver was enlarged and there was water around my heart and lungs this past summer as well, but all that is great now... just joint pain for me. But everyone is so different. Hopefully Mike's organ troubles will disappear as well. It's the not knowing how it will be that frustrated me so badly in the beginning... I imagine he's going through it too. And there's just no answer as to how it's going to be. I don't think even among our quite large group that there are two people who have had the same symptoms. It's kind of like a smorgasbord... a little of this, that, and something else. Don't forget to take care of you too, . It must be very upsetting to have a child with Stills, no matter how big a boy he is. And remind his wife to take care of herself too! Do they have kids? Or do you have other grandchildren? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 I'm down to 20mg a day from 60 (or was it 80?) this past summer... I was down to 15mg for a few weeks, but it just hurt too much so we bumped it up again. They'll put me down again in a week when I visit the clinic again. My liver was enlarged and there was water around my heart and lungs this past summer as well, but all that is great now... just joint pain for me. But everyone is so different. Hopefully Mike's organ troubles will disappear as well. It's the not knowing how it will be that frustrated me so badly in the beginning... I imagine he's going through it too. And there's just no answer as to how it's going to be. I don't think even among our quite large group that there are two people who have had the same symptoms. It's kind of like a smorgasbord... a little of this, that, and something else. Don't forget to take care of you too, . It must be very upsetting to have a child with Stills, no matter how big a boy he is. And remind his wife to take care of herself too! Do they have kids? Or do you have other grandchildren? Quote Link to comment Share on other sites More sharing options...
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