Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Three days is great...Now I will pray for another good 3 days! We cut drea's mtx dose in half on sunday..hopefully this will go well and two months we can dc. Looks like we are both on the path of tapering! Yipppeee!!!!!!!!!! blessings, (drea sjra)-- - In , " hburger64 " <hburger64@h...> wrote: > > Once again I am attempting to taper ' prednisone. I have a > good feeling about it this time.... > > Wish us luck... its been 3 days now and all is well..... > > hugs Helen and (8,systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 . I hope all goes well with Drea's MTX taper. Sounds like shes moving in the right direction. What else is she taking along with the MTX???? anything??? will she be medication free once the MTX is done?? hugs Helen and (8.systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: " sonia1md " <sonia1md@...> Reply- Subject: Re: Prednisone Taper Date: Tue, 08 Nov 2005 00:49:27 -0000 Three days is great...Now I will pray for another good 3 days! We cut drea's mtx dose in half on sunday..hopefully this will go well and two months we can dc. Looks like we are both on the path of tapering! Yipppeee!!!!!!!!!! blessings, (drea sjra)-- - In , " hburger64 " <hburger64@h...> wrote: > > Once again I am attempting to taper ' prednisone. I have a > good feeling about it this time.... > > Wish us luck... its been 3 days now and all is well..... > > hugs Helen and (8,systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Yep she would be med free! :-) She did the pred taper last winter and then we added the mtx along with the plaquenil. We were able to dc the pred. This summer she had severe sun sensitivity which we were finally able to attribute to the plaquenil...So now its just mtx...and folic acid of course. The mtx did such a great job of kicking the arthritis. Last winter she missed so much school. I remember her crying when she got her report card which had several C's. She looked at me and said " I can't believe it, I am a C student " . The tears just flowed that day. This year she hasn't missed any school and All A's and one B on the report card. She looks so healthy! I hope the taper is just a continued step in the right direction! Seems like Nick is surviving the infusions well..I wrote you awhile back about that, but not sure if you ever saw my post...I hope the remicade will do the trick for Nick! (drea 10 sjra)-- - In , " Helen Burger " <hburger64@h...> wrote: > > . > > I hope all goes well with Drea's MTX taper. Sounds like shes moving in the > right direction. What else is she taking along with the MTX???? anything??? > will she be medication free once the MTX is done?? > > hugs Helen and (8.systemic) > > > > > > Hugs..Helen > DH Dan > (22)(16)(13)Zachary(11)(8) > (6) > > > > > ----Original Message Follows---- > From: " sonia1md " <sonia1md@y...> > Reply- > > Subject: Re: Prednisone Taper > Date: Tue, 08 Nov 2005 00:49:27 -0000 > > Three days is great...Now I will pray for another good 3 days! > > We cut drea's mtx dose in half on sunday..hopefully this will go well > and two months we can dc. Looks like we are both on the path of > tapering! Yipppeee!!!!!!!!!! > > > blessings, > (drea sjra)-- > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > Once again I am attempting to taper ' prednisone. I have a > > good feeling about it this time.... > > > > Wish us luck... its been 3 days now and all is well..... > > > > hugs Helen and (8,systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 - when was your daughter diagnosed - does she have systemic JRA - I am so glad that she is doing well - does she ever have symptoms or is she symptom free. I guess I am looking for a success story - I have read that as many as 50% of the kids go symptom free after a couple of years of treatment. Our Hunter has been off the orapred since June - she occasionally has ankle pain and some swelling then it goes away. Recently we stopped the Naproxen because of stomach problems. She was taking Prevacid with it but it still caused stomach problems. I hope that your daughter continues to do well. Sandi Ken Hunter Systemic (7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Helen - we are really pulling for - hope that the tapering goes well. You are such an inspiration to many of us - it is comforting not to be alone in this fight. Thanks Sandi Ken Hunter (7) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Helen, Fingers and toes crossed on the pred tapering. Three days into it and nothing is a great sighn.YIPEE! Love and hugs Becki and & systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Hi Sandi, Well, I certainly hope that Aundrea will be among the success stories, but only time will tell. She became ill about 3 years ago...It took much longer to get a diagnosis. She has systemic jra and it affects her skin. She gets blotchy rashes that come and go all the time. They don't bother her, so I am not to worried about that problem. The joints that have been affected were her wrists, knees and ankles, (along with some foot and heel pain). She has very rarely had any swelling...usually just pain) She went on the mtx last Jan. It has worked wonders. Currently, she may have ankle or knee pain a couple of times a month. It will just ache but doesn't really limit her activity. I kind of equal it to a headache....The thing we dont know is if this " achey pain " is being controlled by the mtx and without it will she have full blown flares again or will the achey days remain as they are....Only experimenting with this taper will give us the answer to that question! Aundrea is nearing puberty and I have heard that there are some kids that outgrow this disease around this time. I sure hope that I will be able to update the board in the future with a good news story! We will try the reduced dose of mtx for 2 months and then discontinue if all is going well! So, currently Hunter is off all meds? Aundrea had a horrible time with that Naproxen. Dizziness, nausea, headaches...None of the tummy meds helped. They have it in her chart that she is allergic to NSAIDS..I am not certain if that is the case or if it had more to do with the high doses that she was taking. I don't know if Aundrea will ever get to the " perfect " phase but if we can get her off the meds and just have occasional achey days...I think we could live with that! Life is such a balancing act isn't it! Blessings, (aundrea 10 systemic jra)--- In , deerhuntert6@a... wrote: > > - when was your daughter diagnosed - does she have systemic JRA - I am > so glad that she is doing well - does she ever have symptoms or is she > symptom free. I guess I am looking for a success story - I have read that as many > as 50% of the kids go symptom free after a couple of years of treatment. Our > Hunter has been off the orapred since June - she occasionally has ankle pain > and some swelling then it goes away. Recently we stopped the Naproxen because > of stomach problems. She was taking Prevacid with it but it still caused > stomach problems. I hope that your daughter continues to do well. Sandi Ken > Hunter Systemic (7) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Good Luck! I hope it works this time (fingers crossed). Will you be at the meeting this Saturday? We are planning on going. I have 1-3 on my calendar, is that correct? I still haven't gotten my reminder postcard or Jottings ( I even contacted after missing the September meeting and she said she'd make sure I was on the mailing list.... Blessings, & (11-poly) > > Once again I am attempting to taper ' prednisone. I have a > good feeling about it this time.... > > Wish us luck... its been 3 days now and all is well..... > > hugs Helen and (8,systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 Good luck! Hope the taper can continue without any problems, Michele (18,spondy) Prednisone Taper Once again I am attempting to taper ' prednisone. I have a good feeling about it this time.... Wish us luck... its been 3 days now and all is well..... hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 -Sandi, Thank you, are so sweet, although i dont think im much of an inspiration, more of an whinner!! LOL I have good feelings about this taper.. i hope it all goes well, although missed school today with monster headache and sore ankles. hes doing fine now.... hugs Helen and (8,systemic) -- In , deerhuntert6@a... wrote: > > Helen - we are really pulling for - hope that the tapering goes > well. You are such an inspiration to many of us - it is comforting not to be > alone in this fight. Thanks Sandi Ken Hunter (7) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2005 Report Share Posted November 8, 2005 -Kimerbly, Yes from 1 to 3... Nick and I will be there. The Jottings came out last week. no longer works for the AF. I think it takes a while to make sure you are on the mailing list. I know Alia has been having problems with this too.. I would check with someone at the meeting on Saturday to find out away to check you are on the list. See you saturday hugs Helen and (8,systemic) -- In , " " <earthmama2k@y...> wrote: > > Good Luck! I hope it works this time (fingers crossed). Will you be at > the meeting this Saturday? We are planning on going. I have 1-3 on my > calendar, is that correct? I still haven't gotten my reminder postcard > or Jottings ( I even contacted after missing the September > meeting and she said she'd make sure I was on the mailing list.... > > Blessings, > > & (11-poly) > > > > > > Once again I am attempting to taper ' prednisone. I have a > > good feeling about it this time.... > > > > Wish us luck... its been 3 days now and all is well..... > > > > hugs Helen and (8,systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2005 Report Share Posted November 9, 2005 Hi Helen, Gentle hugs, for you and Nick. I so hope that everything goes well. Nick's been through so much. I really hope that things go nice and smoothly for him. He's been so strong all along, a brave little warrior, but he deserves a break already. It's eight years, since Josh was the same age as Nick is now, and I am so grateful that in that period of time there have been so many advancements in the field of rheumatology - as far as a somewhat better understanding of the mechanisms involved and with the several new and promising meds. Reading stories you share about Nick and Val's updates on Robbie, too, often remind me of 's early years with arthritis ... but I like to think (and I so fervently hope) that things will be a little bit better now. That improvements will come at a faster pace. Tapering down on the prednisone is a step in the right direction, yes? Josh is getting labs done on Thursday. Results will probably be in at the doctors on Monday. At that point, Josh will probably be tapering down too ... from 4mgs to just 3 a day! Aloha, Georgina Prednisone Taper Once again I am attempting to taper ' prednisone. I have a good feeling about it this time.... Wish us luck... its been 3 days now and all is well..... hugs Helen and (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Sometimes when I've tapered down, I've had a recurrence of pain. It will either settle back down or stay the same. Give it a few days and if you don't improve, call the doctor. You may have just gotten down to the lowest possible dose that your body can tolerate at this point. Sometimes a quick burst of the prednisone is all you need to wipe it out, so I'd give that a try. Good luck with your pregnancy! HTH, Lori http://home.comcast.net/~queenstitcher/ http://stitchingqueen.multiply.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Hi , is there a nurse advisory line or on call person that you could speak with? I won't advise you on meds, but in my exprience, I always had to do a sloooooow taper of pred or I would get issues. I would do things like drop a ..5mg at a time or do ever other day slow tapers. You might be Moving too fast. Hope you feel better! Kate f Sent from my iPhone On Sep 20, 2009, at 10:38 AM, " " <burton_rr@...> wrote: Hi All... I have been quiet and busy for a while with the pregnancy...my Rheumy has been tapering me off Prednisone throughout my pregnancy....starting from 20 mg.....down to 4 mg presently. When I went from 6 to 5 I started to notice shoulder aches and stiffness but no major pains or flares....my doc was not concerned because I had no hand or foot involvement....but just last week I went from 5 mg to 4 and just last night had a horrible flare in my shoulder...burning/shooting pain and I could not move my shoulder.....but still no hand or foot involvement. I can't reach him until tomorrow....should I start taking 5 mg again or wait and speak with him to ask what to do....I am thinking he may take me back up to 10 mg to try to " wipe it out " but I really don't want to have to do this....any thoughts on this??? - B.- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Hi : Have you called your Rheumy? Perhaps you aren't going slow enough with tapering. I have that problem, so the next time I try to get off my Prednisone, I am going even slower. I hope you are successful getting off it. Hugs, Barbara > > Hi All... > I have been quiet and busy for a while with the pregnancy...my Rheumy > has been tapering me off Prednisone throughout my pregnancy....starting > from 20 mg.....down to 4 mg presently. When I went from 6 to 5 I started > to notice shoulder aches and stiffness but no major pains or > flares....my doc was not concerned because I had no hand or foot > involvement....but just last week I went from 5 mg to 4 and just last > night had a horrible flare in my shoulder...burning/shooting pain and I > could not move my shoulder.....but still no hand or foot involvement. I > can't reach him until tomorrow....should I start taking 5 mg again or > wait and speak with him to ask what to do....I am thinking he may take > me back up to 10 mg to try to " wipe it out " but I really don't want to > have to do this....any thoughts on this??? > - B.- > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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