Re: Josh (was ... Happy Holidays)

[Guest guest]

Hi,

It definitely has been a struggle for Josh but ... as soon as his cold is better we're going down to just 3mgs of prednisone a day! I was just saying to my friend how it used to be that I'd read all kinds of stories about other people's children finally being well enough to decrease or even discontinue their steroids. Kids going into remission, no longer needing any meds at all ... making these really big strides. Then, I'd wonder, what the heck was wrong in our case? How come we didn't have these same kinds of real positive improvements? Josh was taking the very same meds, a lot more meds than some of the kids ... and still having active arthritis, despite everything. Slowly but surely I realized that Josh was fitting into that small category of children who have very persistent and active JRA that just doesn't seem to respond real well to the available treatments.

That was a real eye opener. Makes you come to terms with and accept just how serious JRA can be. You want to believe that it won't be too hard on your child. That they won't be among the worst case scenarios. But as time goes on and they're still having the high fevers and the fatigue and the joint pain, you do worry. Then you read the reports on prognosis and hear some that say if the arthritis is active for 5 years ... it's often likely to stay that way for the long haul, right into adulthood. I mean, you feel real good to hear about the progress other kids are making. You're extremely happy for them. But it can get discouraging after a while, to not be among that group.

But ... if even the children with persistently active arthritis can all of a sudden start having a great response and finally be successful, for instance, in being able to reduce their need for corticosteroids .... then it just reminds us that we all have to stay hopeful and positive because miracles really can and do happen. For years I almost didn't believe that Josh would ever get below 10mgs a day. We kept trying but it never worked. Always led to another flare, just as bad as before. Until around November of last year : ) Now it looks like we've really, finally, gotten past the highest hurdles. If Josh can do it I know, for sure, that there's hope for others.

Take care,

Georgina

Georgina,Just wanted to say thank you for continuing to gather information and pass it on to us. I am so greatful. I'm also terribly excited to hear that the steroid dosage for Josh is so low. I know what a struggle that has been.We are stuck on 7.5mg. Can't seem to get below that since the last flare but we are hanging in there. Karl's Dr. wants to up the methotrexate again rather than the steroids. Fine with me!Happy Holidays to everyone!Aimee (Karl's mom, 11, systemic)

[Guest guest]

Georgina,

I don't reply very often on the JRA list because I have been active in a Periodic Fever list, but I follow closely all the time.

Your e-mail about Josh and how serious this disease is touched my heart. I feel for all the kids and families on this list. Although, right now anyhow, we aren't dealing with the joint destruction, Kelli's fevers are wreaking havoc on her little body. 5 solid years of 106 to 107+ fevers ever 21 days has taken its toll. I can only imagine what all the wee ones with joint problems are dealing with. Kelli gets the joint pain, swelling and redness with the episodes, but hers goes away between episodes. She also gets the rashes, and lately, they have been coming a lot. Our Ped. Rheumatologist describes them as the "Stills Rash" but can't bring himself to diagnose her with Systemic, so we go down yet another road.

My heart breaks for you and all your families. We have to give Kelli Prednisone as well, although not on a daily basis right now. I have a strong love/hate relationship with it. As I know you do as well!!!!!

Anyway, just wanted you to know that I think about you often!!!

Merry Christmas to everyone!!! May your little ones (and bigger little ones) get everything they wish for this year and may they have a whole day pain free!!!!!!!! :-)

Angie

[Guest guest]

Hi Angie,

It was really nice to get your email. I know how busy everyone is, especially at this time of year, but it's always nice to see a message here from an old friend : )

I hope Kelli had a very nice Christmas. And the rest of the family, too. And I hope that in the coming new year more of our questions will be answered, so that all of our children's lives will be enriched and they'll have fewer days that include pain.

Angie, do keep searching for the answers. The things that you have learned about and shared have made a big difference in the lives of others who are trying to figure these things out, too. Together, we all can make a difference.

Take Care,

Georgina

I don't reply very often on the JRA list because I have been active in a Periodic Fever list, but I follow closely all the time.

Your e-mail about Josh and how serious this disease is touched my heart. I feel for all the kids and families on this list. Although, right now anyhow, we aren't dealing with the joint destruction, Kelli's fevers are wreaking havoc on her little body. 5 solid years of 106 to 107+ fevers ever 21 days has taken its toll. I can only imagine what all the wee ones with joint problems are dealing with. Kelli gets the joint pain, swelling and redness with the episodes, but hers goes away between episodes. She also gets the rashes, and lately, they have been coming a lot. Our Ped. Rheumatologist describes them as the "Stills Rash" but can't bring himself to diagnose her with Systemic, so we go down yet another road.

My heart breaks for you and all your families. We have to give Kelli Prednisone as well, although not on a daily basis right now. I have a strong love/hate relationship with it. As I know you do as well!!!!!

Anyway, just wanted you to know that I think about you often!!!

Merry Christmas to everyone!!! May your little ones (and bigger little ones) get everything they wish for this year and may they have a whole day pain free!!!!!!!! :-)

Angie

[Guest guest]

Georgina,

Thank you for the wonderful e-mail. It warmed my heart. You are always such an encouragement to so many people. We are all fortunate to have you and we are blessed to be the recipients of all you hard work.

Together, we can all make a difference and you show us that every day!!!! I think I have been on a continual search for answers for 4 years now. Just as I know we on this list all do. Here's hoping that there are truly more pain free days and more research into these dreaded diseases that our children suffer from. They deserve that much and so much more.

Give Josh a big hug and I hope your new year is great and prosperous.

Angie,

Nacogdoches, TX

[Guest guest]

Hi Angie,

Thank you. I, too, hope that this coming new year will be a wonderful one ... for each of us : )

Aloha,

Georgina

Josh says to say thank you, for the hug : )

Georgina,

Thank you for the wonderful e-mail. It warmed my heart. You are always such an encouragement to so many people. We are all fortunate to have you and we are blessed to be the recipients of all you hard work.

Together, we can all make a difference and you show us that every day!!!! I think I have been on a continual search for answers for 4 years now. Just as I know we on this list all do. Here's hoping that there are truly more pain free days and more research into these dreaded diseases that our children suffer from. They deserve that much and so much more.

Give Josh a big hug and I hope your new year is great and prosperous.

Angie,

Nacogdoches, TX