Re: Re: systemic JRA moving joint pain

[Guest guest]

Hi ,

If I had to guess ,I would say that all the joints you listed hurt, it's just a matter of which one hurts the worst at any given time.Sorry the pain was so bad your daughter cried.That is very common in the beginning as the pain can be quite severe.In time these poor angels develop such a high pain tolerance and they get sooo used to the pain that they become acustomed to it and find ways to do things differantly so it doesn't hurt as bad or the pain just becomes"normal".Now is a great time to invest in either a heated matress pad,throw or blanket. has the matress pad and a friend of mine has a throw that she puts down like a sheet and her little girl sleeps on top of it.My 8 yr old daughter prefers showers but for a hot bath or two or three would help ease the symptoms atleast to tolerable.

Ask any question any time.

Hugs

Becki and 5 systemic

[Guest guest]

Hi ,

WOW!That is one tough cookie you have there.No wonder you were upset about her crying.The pred while it has saved many lives to me is no real miricle drug.Even when was on high doses he couldn't move when he woke up.About an hour to an hour and a half after his pred he would start to loosen up and be able to crawl then slowely able to stand.Running and jumping were unheard of.It kept the fevers down but didn't touch the rash.The pred didn't really work it's magic until the Methotrexate kicked in about 4 months later after switching from oral to injections.It took another 19 months to get the drug combo and doses just right before he was able to discontinue the pred.It will be a full year pred free Feb 14th and it's been a full year 100%symptom free.DMARD therapy is the key to getting the disease under control.The Nap alone will not do it and Pred and Nap will not do it.It takes some really strong drugs to fight ole Arthur.For they wouldn't start the MTX until the 6 week mark was officially up.One thing this disease teaches us is patiance or at least how to be tolerable.It's a slow going journey wheather you are raising doses of drugs or tapering.For it took the maximum amount of MTX,PLaquenil,Ibuprofin,steroids and finally Enbrel.He know just takes MTX and Enbrel and should be off the MTX in a few months.

Many prayers your way.

Hugs

Becki and 5 systemic