Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Nick is in our thoughts and prayers.........it does seem like it just doesn't want to end at times doesn't it??..............take care.......... Luv and hugs, Aj and Holly (12 yrs old, systemic jra since 9/94) _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Helen, I pray that the end is near soon! Poor little guy,I hope the pred burst helps and he can make it until next Friday. Any fever or rash or just nasty Arthur?Any mention of uping the Remicade dose or just closer together? Whatever the plan I hope and pray it works.I realy want to hear stories about Nick enjoying that big,wonderful pool this summer. Love and hugs Becki and 7 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Helen I am so sorry to hear Nick is flaring. Poor guy.. I hope this kicks the JRA in the butt and he can get back to feeling like his cute little spunky self! You guys are always in my thoughts and prayers. Lots of love (JAS, 21) hburger64 <hburger64@...> wrote: Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Helen, I'm so sorry to hear that Nick is feeling terrible. I hope that the increase in frequency of the remicade will knock the flare out. What is the news as far as your sons' echo exams go? I've been thinking and praying for you guys. and Rob 16 Spondy On Thu, 23 Feb 2006 01:12:02 -0000 " hburger64 " <hburger64@...> writes: Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 It seems like it never ends, doesn't it? Nick is in our thoughts and prayers. I hope this infusion lasts longer for him. Hopefully spring will be on it's way soon and it will bring better days for our kids! Summer hburger64 <hburger64@...> wrote: Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 I just send out an E-mail to my prayer request E-mail group, and he is also in my thoughts and prayers!!! *gentle hugs* for Nick and Helen! Stay strong it'll get better!!!! ~God Bless~ > > Please keep Nick in your thoughts, hes having a rough time right now. > His hands are really bad. It seems his last remicade infusion only > lasted 3 weeks. > > We have bumped up his next infusion to next friday and in the mean > time we are doing a prednisone burst of 40mg a day for 5 days and then > going down to 2mg a day ( hes was down to 1mg a day) and hoping that > holds him until the infusion. We also need to get OT involved. > > Is this ever going to end??? > > Hugs Helen and (8,systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 I'm so sorry to hear that Nick is having a bad time. Please give him a {{{{{{HUG}}}}}} from us. -- Lorilee ~~~~~~~~~~~~~~~~ Ken 47 {PolyRA} 6 {Systemic JRA, Eczema}, Kayla 15 {Healthy Thank God} 18 {Asthma} ~~~~~~~~~~~~~~~~ -------------- Original message -------------- From: " hburger64 " <hburger64@...> Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 I'm sorry to hear of Nick's flare. I'll keep him in my thoughts and pray that things calm down soon. Michele (18 spondy) Nick is flaring ( Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 -hey maria,, Sorry i forgot to post with all that is going on with Nick, thank you for thinking of the other kids. Its GOOD news soo far. s echo was yesterday and was TOTALLY normal. In fact his root is the same size as Nicks, which just goes to show how large ' is. lets hope the rest are all ok too.. one thing off my mind. hugs Helen and (8,systemic)' -- In , snooksmama@... wrote: > > Helen, > I'm so sorry to hear that Nick is feeling terrible. I hope that the > increase in frequency of the remicade will knock the flare out. > What is the news as far as your sons' echo exams go? I've been thinking > and praying for you guys. > and Rob 16 Spondy > > On Thu, 23 Feb 2006 01:12:02 -0000 " hburger64 " <hburger64@...> > writes: > Please keep Nick in your thoughts, hes having a rough time right now. > His hands are really bad. It seems his last remicade infusion only > lasted 3 weeks. > > We have bumped up his next infusion to next friday and in the mean > time we are doing a prednisone burst of 40mg a day for 5 days and then > going down to 2mg a day ( hes was down to 1mg a day) and hoping that > holds him until the infusion. We also need to get OT involved. > > Is this ever going to end??? > > Hugs Helen and (8,systemic) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 --becki... Im sure the doctor is thinking of upping the remicade dose, he had already mentioned this at our last appt. Apparently its not unusual for the remicade to quit working around the 3-4 weeks. or so the nurse tells me. thinking about it... when you start remicade you get an infusion at weeks 0,2,6 and then every 8 weeks after. So Nick was getting the infusions pretty close together at the begining and he was doing awesome. Now they have spaced out to 8 weeks and its now we are having the issues. IM sure we are looking at higher doses and closer infusions. I cant wait for the pool either! Im about done with Minnesota winter!!! hugs Helen and (8,systemic) - In , Arthurnator@... wrote: > > Helen, > I pray that the end is near soon! > Poor little guy,I hope the pred burst helps and he can make it until next > Friday. > Any fever or rash or just nasty Arthur?Any mention of uping the Remicade dose > or just closer together? > Whatever the plan I hope and pray it works.I realy want to hear stories about > Nick enjoying that big,wonderful pool this summer. > Love and hugs > Becki and 7 systemic > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Helen many prayers for Mr. ! hopely his bad bout will end soon. hplta Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 HI Helen-- I am so sorry that poor nick is struggling. It's quite the irony... I have always expected that as we get closer to spring, the kids would be doing better. But it seems as if every year, I am surprised at all the flares that pop-up with the daffodils. And of course, I'm sure it does not feel at all like spring there! When Caitlin was on the Remicade, she went once a month, so maybe they will try that with Nick. I hope things turn around quickly... with all the cardiac worries, you certainly don't need to have the poor guy flaring too! I'm thinking of you all often and sending prayers.... Take care- Colleen (mom to Caitlin, systemic) hburger64 <hburger64@...> wrote: Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Helen - I am so sad for you and ! I home the pulse works and that he gets some relief until next Friday.. At least you will see Dr. Vehe next Thursday so he can see what he's like outside the doctor's office! We'll be saying a prayer for you! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of hburger64 Sent: Wednesday, February 22, 2006 7:12 PM Subject: Nick is flaring ( Please keep Nick in your thoughts, hes having a rough time right now. His hands are really bad. It seems his last remicade infusion only lasted 3 weeks. We have bumped up his next infusion to next friday and in the mean time we are doing a prednisone burst of 40mg a day for 5 days and then going down to 2mg a day ( hes was down to 1mg a day) and hoping that holds him until the infusion. We also need to get OT involved. Is this ever going to end??? Hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
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