Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Hi Liz, is only into his systemic JRA since June 21,2001,but I just wanted to say I am so happy responded to the Enbrel so well,that is such great news.I know all about wishing they could have started it sooner.s application was sent in Dec 2001 and finally Sept 2002 we sighned him up for an Enbrel study in Cincinatti.It's a 5-6 hour drive each way but well worth it.He responded in the 2-3 week time frame also.In Oct s regular rheumy took him completely off the Plaquenil,now once he gets off the pred we start reducing the 25mg MTX.We are getting there finally.I am slowely weaning him to 1mg pred every other day then a month later he is off.It's strange how for some it is like a miricle yet for others it doesn't do much of anything.I am just happy that after all the months of waiting for it we got it and it's working it's magic.I don't know what s rheumy will say,but I think I am going to ask if he can be switched back to pills.Only I don't think they recommend pills if the dose is above 15mg.Again congradulations on the excellant news.Hopefully by the 3 month mark the stubborn joint will be better too. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Liz I am so sorry to hear that 's alopecia treatments did not go well. She is an amazing girl and is so courageous. I'll keep her in my prayers. and Rob 15 Spondy On Fri, 05 Nov 2004 14:16:04 -0000 " hburger64 " <hburger64@...> writes: -Liz, Im sorry that s treatment is not being too effective. Is it like JRA where they try different drugs/cocktails until they find the magic one??? I hope starts to see some positive results, and soon. It sounds like she is dealing with it well.. Being a jr high schooler can be tough at the best of times. It has to be doublely ( is that a word??) tough when she has something so visible going on. But shes dealing with it with the same pose and dignity as she does her JRA. Hugs to and to you... Helen and (7,systemic) -- In , " liz smith " <liz_smith@c...> wrote: > That should have said treatments for the alopecia are NOT proving to be > terrible effective. > > > > RE: Aristospan and Alia > > > > Therese, > > > > I am thrilled to hear that Genevieve is off all meds! I pray that this > continues for many, many years! > > > > is doing well, thank you. She continues on meds for her arthritis as > well as in physical therapy and is able to keep up with her peers again. We > have a follow up with her rheumatologist next week. > > > > The alopecia is a different story. That continues to worsen and treatments > are proving terribly effective for her. She still has a decent amount of > hair, but also areas where her scalp is VERY visible. She has taken to > wearing hats and scarves. In her school they are only allowed for religious > or medical reasons, so we got that added into her 504 plan. Overall is > handling this well~~ amazingly well when you consider that she's a 7th > grader. It's a tough age without all the " extras " . We do, however, have our > moments and she has a good cry now and then. > > > > Is your friend taking her daughter to a dermatologist? The size and shape of > her daughter's spots certainly sound like alopecia, so you might want to > suggest that she look for a dermatologist who is experienced in treating > alopecia. > > > > Again, congratulations on baby #7!!! > > > > Liz > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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