Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Sulfasalasine...its the med they typically try for us Spondy kids.. Enbrel is a funny thing it has a done a little for my poly jra but nada for my spondy.. I hope they figure something out for Tyler Lots of Prayers (poly JRa and Spondy, 19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Missy, Sulfasalazine is most likely the med your doc mentioned. It's supposed to be pretty good for some forms of arthritis. I'm sorry the methotrexate didn't do anything for Tyler. I hope that the increased vioxx will do the trick and you won't have to add stronger meds. Liz Update on Tyler Hi all, Well Tyler had his rhem. visit and it was disappointing. The dr. had to take him off the mtx. She said it was not doing him any good and the big factor was he has lost weight at every visit and it can be traced directly to the mtx. He is 4'9 and is barely at 68-70 pounds. So she felt like the losing weight was more important that continuing the mtx. with no relief. I am glad he's off the mtx. but I feel like we wasted 5 monthes giving it to him. She increased his Vioxx to 25mg a day and wants to see what happens. I love it when dr.'s say that!!! So we again are on the experimenting with med's wagon. She did say something I found interesting, she told us that mtx. only works about 50% of the time with children with Spondy. I didn't know that. She also said he was not a good candidate for Enbrel. Tyler was glad he doesn't have to take the mtx. anymore as it upset his stomach so. She also said that if he starts having increased pain or flares, she wouldn't hesitate to put him o n injection of mtx. to try, or another medication that starts with a " S " that I have not heard of, maybe one of you have. Thanks for listening. Missy and Tyler(spondy 10) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Missy, Im sorry to read Tylers appt was a little disappointing, but I am glad that hes stopping the MTX if thatsd the cause of his weight issues. Now at least he will be able to gain some of his lost weight back. I hope the increase of vioxx helps, but if not at least you know theres more medications that can help him... It is frustating though having to do the " lets wait and see what happens " rountine. I can't stand that either. Hugs Helen and (6,systemic) > Hi all, > Well Tyler had his rhem. visit and it was disappointing. The dr. had to take him off the mtx. She said it was not doing him any good and the big factor was he has lost weight at every visit and it can be traced directly to the mtx. He is 4'9 and is barely at 68-70 pounds. So she felt like the losing weight was more important that continuing the mtx. with no relief. I am glad he's off the mtx. but I feel like we wasted 5 monthes giving it to him. She increased his Vioxx to 25mg a day and wants to see what happens. I love it when dr.'s say that!!! So we again are on the experimenting with med's wagon. She did say something I found interesting, she told us that mtx. only works about 50% of the time with children with Spondy. I didn't know that. She also said he was not a good candidate for Enbrel. Tyler was glad he doesn't have to take the mtx. anymore as it upset his stomach so. She also said that if he starts having increased pain or flares, she wouldn't hesitate to put him o > n injection of mtx. to try, or another medication that starts with a " S " that I have not heard of, maybe one of you have. > Thanks for listening. > Missy and Tyler(spondy 10) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 I was on it for awhile.. but became alergic to it and had violent vomiting episodes every morning and night for a month straight (they finally linked the two). Surprisingly it did help a little.. but the allergy to sulfa can be dangerous...So I was off it then on plaquinil..Then methotrexate now Enbrel..And possible might be changing that soon... poly jra and spondy, 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Thanks , Are you on the Sulfasalasine? If so, has it helped and what exactly is it? Thanks Missy and Tyler(spondy10) Re: Update on Tyler > Sulfasalasine...its the med they typically try for us Spondy > kids.. Enbrel is > a funny thing it has a done a little for my poly jra but nada for > my spondy.. > I hope they figure something out for Tyler > > Lots of Prayers > (poly JRa and Spondy, 19) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Liz, yes that's it. Thanks. I hope the vioxx work also. Thanks for the help. Missy and Tyler(spondy 10) Update on Tyler > > Hi all, > Well Tyler had his rhem. visit and it was disappointing. The dr. > had to > take him off the mtx. She said it was not doing him any good and > the big > factor was he has lost weight at every visit and it can be traced > directly to the mtx. He is 4'9 and is barely at 68-70 pounds. So she > felt like the losing weight was more important that continuing the > mtx.with no relief. I am glad he's off the mtx. but I feel like we > wasted 5 > monthes giving it to him. She increased his Vioxx to 25mg a day and > wants to see what happens. I love it when dr.'s say that!!! So we > againare on the experimenting with med's wagon. She did say > something I found > interesting, she told us that mtx. only works about 50% of the > time with > children with Spondy. I didn't know that. She also said he was not a > good candidate for Enbrel. Tyler was glad he doesn't have to take the > mtx. anymore as it upset his stomach so. She also said that if he > startshaving increased pain or flares, she wouldn't hesitate to > put him o > n injection of mtx. to try, or another medication that starts with > a " S " > that I have not heard of, maybe one of you have. > Thanks for listening. > Missy and Tyler(spondy 10) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 I understand about the weight. Sadie has been diagnosed with Juvenile Dermatomyositis and Dr. Cole believe that this is attacking her fat cells, and that is why she keeps loosing weight. She is 11, wieght 60 4'6 " . How did you like the Dr. in Houston? How long did it take to get the appointment? Was there a reason why you switched from Dr. Cole? I hope once the baseball season is over we can get you to our San support group meeting. We just returned from Jambalaya Jubilee is Shreveport, do you know about this retreat? Dr. Cole sponsored 2 buses. Our next support group meeting will be August. Jeanine (Sadie, 11 JDMS) > Hi all, > Well Tyler had his rhem. visit and it was disappointing. The dr. had to take him off the mtx. She said it was not doing him any good and the big factor was he has lost weight at every visit and it can be traced directly to the mtx. He is 4'9 and is barely at 68-70 pounds. So she felt like the losing weight was more important that continuing the mtx. with no relief. I am glad he's off the mtx. but I feel like we wasted 5 monthes giving it to him. She increased his Vioxx to 25mg a day and wants to see what happens. I love it when dr.'s say that!!! So we again are on the experimenting with med's wagon. She did say something I found interesting, she told us that mtx. only works about 50% of the time with children with Spondy. I didn't know that. She also said he was not a good candidate for Enbrel. Tyler was glad he doesn't have to take the mtx. anymore as it upset his stomach so. She also said that if he starts having increased pain or flares, she wouldn't hesitate to put him o > n injection of mtx. to try, or another medication that starts with a " S " that I have not heard of, maybe one of you have. > Thanks for listening. > Missy and Tyler(spondy 10) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 How frustrating for you. I wonder why the oral mtx caused weight loss?? Maybe because it upset his stomache so he wouldn't eat much?? I wish you better luck with the vioxx. So he's not on any DMARD at all right now? Hmmmm. Stacia and Hunter,8,systemic,iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Ty is home...things all went smoothly...they were a few surprises but all taken care of...his platelets are even lower even though he was given some during surgery ...so of course they are keeping an eye on that... It was a different experience being in an adult hosp..but everything went well and being that they put him in the tx unit after surgery he was well looked after..and everyone was very nice. It sure is different from being in Childrens Hosp for so many yrs where we knew everyone by name and where everything was...this is all very new..but we are getting there... thanks to the people to wished us well and kept Ty in their prayers...it was a scary time for all of us... will be doing some lurking for awhile and wanting to join in again...soon.... thanks again.. luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Luanne I am so glad everything went well. Sorry I didn't get back sooner but am way behind. We miss you the WV Hillbilly Quote Link to comment Share on other sites More sharing options...
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