Guest guest Posted February 21, 2000 Report Share Posted February 21, 2000 Our daughter 's first flare was about two weeks (with very high fevers, and not walking) then they did the big steroid thing. That got it more under control for about a month. Although we still never knew what we would wake up to in the morning. Some times she would spike at 104F other times it would just be a light fever of 99 or 100F. Then she had another huge flare when her live reacted badly to the Indocin she was taking. That flare went on for about 6 weeks although with the heavy use of steroids was under control so she could walk etc and had a low fever in about two weeks. It took long time to taper of the steroids as she had been on so much but in January (7 months after the last flare and 9 months after the start of it all) she is medicine free and in a total unmedicated remission. It was less than five months till we saw no signs of this horrible illness. Then those other four just getting off the drugs! I think you'll find that every one here has a different story. Our daughter is now 4 1/2 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2000 Report Share Posted February 21, 2000 , Hi! Can you give me Barb's phone number (the social worker for JRA), please? I want to call and ask when the get together is schedule. We are are trying to make plans for next month and I don't want to miss the JRA get together. Thanks, Amy At 01:37 PM 2/21/00 -0800, you wrote: >From: " WILLIAM PRICE " <william.e.price@...> > >For anyone out there with experience with systemic flares, I have a >question. We are in our first flare since diagnosis. How long can it >last? n was really bad this week, but has really improved over the >weekend. It was so bad that she couldn't walk for a few days. She has >headaches, stomachaches, and the fever at night. Even with those 3 >things, she is pretty good compared to last week. She might even be able >to go to school tomorrow. She has a rash, but she has that since the >beginning--that has never left us. Her original fever lasted a bit over a >month. Do we have that to look forward to again? > >---------- >For links to websites with JRA info visit: ><http://www.geocities.com/Heartland/Village/8414/Links.html>http://www.geoc >ities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi , Don't know how much help I can be, but I'll try. Jess' rheumy said her 6 week flare, at diagnosis, was a 'short' flare. She said they usually last months. We were blissfully flare-free from the week of Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers though. The pain in the wrist came back and has gotten increasingly worse since then. The last round of prednisone did nothing, so we are scheduled for steroid injections this Friday, the 25th. This is our first time with something like this, I posted questions on Sat. but so far no replies from the list, I'm not sure if my letters are coming through to all of you. Jess is still rashy most evenings, but so far we have stayed ahead of the itchiness this time. The original flare, the itching was horrible. Is n on an NSAID, I try to keep all of the kids sorted, but that is nearly impossible. I don't know how Georgina keeps them all straight. I'm glad she has had some improvement over the week-end. Jess is on Sulindac 2x daily. I don't know if that helps keep her from being feverish or not. They just changed her from Naproxen (Naprosyn) last Friday, she had been on that since her first flare in Oct/Nov. Like I said I don't know how much help I can be, but I am trying. Good luck and I hope n keeps on improving daily and gets over this flare as soon as possible. JODI WILLIAM PRICE wrote: > From: " WILLIAM PRICE " <william.e.price@...>For anyone > out there with experience with systemic flares, I have a question. We > are in our first flare since diagnosis. How long can it last? n > was really bad this week, but has really improved over the weekend. > It was so bad that she couldn't walk for a few days. She has > headaches, stomachaches, and the fever at night. Even with those 3 > things, she is pretty good compared to last week. She might even be > able to go to school tomorrow. She has a rash, but she has that since > the beginning--that has never left us. Her original fever lasted a > bit over a month. Do we have that to look forward to again? > ----------------------------------------------------------------------- > [Click Here] > ----------------------------------------------------------------------- > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Lochlan had his first flare last year, it went for over 4 weeks with the same symptons you describe, plus some. SO far over the past 4 months he has had the occassional mild flare overnight with extreme pain but " panadol " have relieved it, he has also had mild fevers. It is currenly our summer and I am waiting to see how he copes this winter. It has been raining lately (we live in the tropics) and he has been stiff etc. over the past couple of days. best wishes for n. If you have any other questions please don't hesitate to ask privately if you wish (Lochlan is 3 1/4) >From: " WILLIAM PRICE " <william.e.price@...> >Reply- onelist > " jra list " < onelist> >Subject: length of flares >Date: Mon, 21 Feb 2000 13:37:09 -0800 > >For anyone out there with experience with systemic flares, I have a >question. We are in our first flare since diagnosis. How long can it >last? n was really bad this week, but has really improved over the >weekend. It was so bad that she couldn't walk for a few days. She has >headaches, stomachaches, and the fever at night. Even with those 3 things, >she is pretty good compared to last week. She might even be able to go to >school tomorrow. She has a rash, but she has that since the >beginning--that has never left us. Her original fever lasted a bit over a >month. Do we have that to look forward to again? ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Jodi sorry I didn't see any of your posts, please post again so we can help. >From: Jodi Giffin <qltlady@...> >Reply- onelist > onelist >Subject: Re: length of flares >Date: Mon, 21 Feb 2000 21:05:52 -0500 > >Hi , >Don't know how much help I can be, but I'll try. Jess' rheumy said her >6 week flare, at diagnosis, was a 'short' flare. She said they usually >last months. We were blissfully flare-free from the week of >Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers >though. The pain in the wrist came back and has gotten increasingly >worse since then. The last round of prednisone did nothing, so we are >scheduled for steroid injections this Friday, the 25th. This is our >first time with something like this, I posted questions on Sat. but so >far no replies from the list, I'm not sure if my letters are coming >through to all of you. Jess is still rashy most evenings, but so far we >have stayed ahead of the itchiness this time. The original flare, the >itching was horrible. Is n on an NSAID, I try to keep all of the >kids sorted, but that is nearly impossible. I don't know how Georgina >keeps them all straight. I'm glad she has had some improvement over the >week-end. Jess is on Sulindac 2x daily. I don't know if that helps >keep her from being feverish or not. They just changed her from >Naproxen (Naprosyn) last Friday, she had been on that since her first >flare in Oct/Nov. Like I said I don't know how much help I can be, but >I am trying. Good luck and I hope n keeps on improving daily and >gets over this flare >as soon as possible. JODI > >WILLIAM PRICE wrote: > > > From: " WILLIAM PRICE " <william.e.price@...>For anyone > > out there with experience with systemic flares, I have a question. We > > are in our first flare since diagnosis. How long can it last? n > > was really bad this week, but has really improved over the weekend. > > It was so bad that she couldn't walk for a few days. She has > > headaches, stomachaches, and the fever at night. Even with those 3 > > things, she is pretty good compared to last week. She might even be > > able to go to school tomorrow. She has a rash, but she has that since > > the beginning--that has never left us. Her original fever lasted a > > bit over a month. Do we have that to look forward to again? > > ----------------------------------------------------------------------- > > [Click Here] > > ----------------------------------------------------------------------- > > For links to websites with JRA info visit: > > http://www.geocities.com/Heartland/Village/8414/Links.html > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi Jodi, I'm glad the itchiness is gone! I hope the Sulindac helps Jess and works better than the Naprocyn did. Josh started out on Naprocyn too but eventually switched to indomethacin. That's been working pretty good for him, better than naprocyn or relafen did. It's a good thing there are several NSAID's available. Just in case one doesn't work as well as it should, there are others to try. I'km amazed the oral prednisone didn't work to get rid of the inflammation and pain in your daughter's wrist. I hope the injections will bring her relief. I think it's safer and has fewer side effects when it's given as a localized injection, instead of orally. Is her arthritis limited just to one wrist mainly? Let us know how the doctor visit goes, Georgina Jodi Giffin wrote: > > Hi , > Don't know how much help I can be, but I'll try. Jess' rheumy said > her 6 week flare, at diagnosis, was a 'short' flare. She said they > usually last months. We were blissfully flare-free from the week of > Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers > though. The pain in the wrist came back and has gotten increasingly > worse since then. The last round of prednisone did nothing, so we are > scheduled for steroid injections this Friday, the 25th. This is our > first time with something like this, I posted questions on Sat. but so > far no replies from the list, I'm not sure if my letters are coming > through to all of you. Jess is still rashy most evenings, but so far > we have stayed ahead of the itchiness this time. The original flare, > the itching was horrible. Is n on an NSAID, I try to keep all of > the kids sorted, but that is nearly impossible. I don't know how > Georgina keeps them all straight. I'm glad she has had some > improvement over the week-end. Jess is on Sulindac 2x daily. I > don't know if that helps keep her from being feverish or not. They > just changed her from Naproxen (Naprosyn) last Friday, she had been on > that since her first flare in Oct/Nov. Like I said I don't know how > much help I can be, but I am trying. Good luck and I hope n > keeps on improving daily and gets over this flare > as soon as possible. JODI > > WILLIAM PRICE wrote: > > > From: " WILLIAM PRICE " <william.e.price@...>For anyone > > out there with experience with systemic flares, I have a question. > > We are in our first flare since diagnosis. How long can it last? > > n was really bad this week, but has really improved over the > > weekend. It was so bad that she couldn't walk for a few days. She > > has headaches, stomachaches, and the fever at night. Even with > > those 3 things, she is pretty good compared to last week. She might > > even be able to go to school tomorrow. She has a rash, but she has > > that since the beginning--that has never left us. Her original > > fever lasted a bit over a month. Do we have that to look forward to > > again? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi , My son Josh often feels more stiff and sore during our rainy season, as well. Aloha, Georgina wrote: > > > Lochlan had his first flare last year, it went for over 4 weeks with the > same symptons you describe, plus some. > > SO far over the past 4 months he has had the occassional mild flare > overnight with extreme pain but " panadol " have relieved it, he has also had > mild fevers. It is currenly our summer and I am waiting to see how he copes > this winter. It has been raining lately (we live in the tropics) and he has > been stiff etc. over the past couple of days. > > best wishes for n. > > If you have any other questions please don't hesitate to ask privately if > you wish > > (Lochlan is 3 1/4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi , The length of a flare ... that's something that is very hard to determine. It can be a short, mild flare that clears up on it's own over time or it can become a major flare, causing symptoms as bad as during the first onset and requiring an increase or change in medications to finally get under control. One time Josh had an extended flare that lasted about 3 months. I think that was about the longest. Slowly he started having an increase in affected joints; his wrists, fingers, elbow, ankles, etc. all started hurting him again, he had lots more inflammation, was suddenly having trouble walking again. The fevers and rash came back too, after not seeing them for a few months. He just wasn't doing well at all and got increasingly worse over time. It may have been caused by his getting sick with a regular cold, or been brought on by the reduction in his steroid dose. I thought it would be just a matter of time before his body adjusted and things would be better again. But after 3 months it got really bad, to the point where I finally agreed to double the dose of steroid to at least get things more manageable. That worked ... but it's been really hard to taper the dose. He went from 15mgs a day up to 30 and we're still on 20/17.5mgs, after many, many months. I've read that each subsequent flare is often shorter than the previous ones but I've wondered if that's just because the children are usually getting treated by then. Josh, in the beginning, continued to have fevers, rash and other symptoms of active jra pretty much daily for just about the whole first year. At that time he was taking mtx, prednisone and indomethacin. The doctors seemed surprised that it stayed so active for so long, despite treatment. So they adjusted doses and added another DMARD, trying to get it right. I guess it's pretty much under control right now but it's still precarious when we try to taper the steroids a little bit, which we have to do over time, or when he gets a cold virus or something, which sometimes triggers another flare up. This probably won't be of much help I guess, but I think it's almost impossible for anyone to know how long a particular flare will last, what direction it will take, or what might need to be done to get it under control. I hope the worst is over and that things will be more mild from here on but it's so hard to know for sure. Take care, Georgina > WILLIAM PRICE wrote: > For anyone out there with experience with systemic flares, I have a > question. We are in our first flare since diagnosis. How long can it > last? n was really bad this week, but has really improved over > the weekend. It was so bad that she couldn't walk for a few days. > She has headaches, stomachaches, and the fever at night. Even with > those 3 things, she is pretty good compared to last week. She might > even be able to go to school tomorrow. She has a rash, but she has > that since the beginning--that has never left us. Her original fever > lasted a bit over a month. Do we have that to look forward to again? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Hello all again!! I knew if I said her itchiness was gone, it would make me regret those words!! She started itching slightly today, so we'll have to move back to the stronger 'itch' pill. Jess also had the pain and swelling go up into the top joint of the thumb on the right hand on Saturday. Last night the pain started in the left wrist also. They are going to check the thumb and left wrist before starting the injection on Friday and if those areas need it, they will inject there also I guess. She had a bad reaction from anesthesia a couple of years ago when she had her tonsils out, so I went on a wild goose chase today trying to find out what that drug was. They want to avoid using that and to add that to her files at Children's. Still haven't found out what it was, hopefully I will tomorrow. Thought it would be as simple as phoning the surgeon, not so.......medical records at the hospital, and they won't disclose info over the phone, have to have it faxed, I don't have one, or pick it up in person, with photo I.D., of course. Her fatigue level was improved for a short while, but she seems really tired all the time again. Sometimes she fights it, and sometimes it just overwhelms her. She refuses to miss school, in High School it just takes so long to catch back up. I remind her that the rheumy would help with school issues if need be, but she just keeps plugging along. Sorry to ramble so......just glad to know I have all of you........I read the letters on the list as often as I possibly can. Hope all of the children are feeling better.........my prayers for all........JODI Georgina wrote: > From: Georgina <gmckin@...> > > Hi Jodi, > > I'm glad the itchiness is gone! I hope the Sulindac helps Jess and works > better than the Naprocyn did. Josh started out on Naprocyn too but > eventually switched to indomethacin. That's been working pretty good for > him, better than naprocyn or relafen did. It's a good thing there are > several NSAID's available. Just in case one doesn't work as well as it > should, there are others to try. I'km amazed the oral prednisone didn't > work to get rid of the inflammation and pain in your daughter's wrist. I > hope the injections will bring her relief. I think it's safer and has > fewer side effects when it's given as a localized injection, instead of > orally. Is her arthritis limited just to one wrist mainly? > > Let us know how the doctor visit goes, > Georgina > > Jodi Giffin wrote: > > > > Hi , > > Don't know how much help I can be, but I'll try. Jess' rheumy said > > her 6 week flare, at diagnosis, was a 'short' flare. She said they > > usually last months. We were blissfully flare-free from the week of > > Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers > > though. The pain in the wrist came back and has gotten increasingly > > worse since then. The last round of prednisone did nothing, so we are > > scheduled for steroid injections this Friday, the 25th. This is our > > first time with something like this, I posted questions on Sat. but so > > far no replies from the list, I'm not sure if my letters are coming > > through to all of you. Jess is still rashy most evenings, but so far > > we have stayed ahead of the itchiness this time. The original flare, > > the itching was horrible. Is n on an NSAID, I try to keep all of > > the kids sorted, but that is nearly impossible. I don't know how > > Georgina keeps them all straight. I'm glad she has had some > > improvement over the week-end. Jess is on Sulindac 2x daily. I > > don't know if that helps keep her from being feverish or not. They > > just changed her from Naproxen (Naprosyn) last Friday, she had been on > > that since her first flare in Oct/Nov. Like I said I don't know how > > much help I can be, but I am trying. Good luck and I hope n > > keeps on improving daily and gets over this flare > > as soon as possible. JODI > > > > WILLIAM PRICE wrote: > > > > > From: " WILLIAM PRICE " <william.e.price@...>For anyone > > > out there with experience with systemic flares, I have a question. > > > We are in our first flare since diagnosis. How long can it last? > > > n was really bad this week, but has really improved over the > > > weekend. It was so bad that she couldn't walk for a few days. She > > > has headaches, stomachaches, and the fever at night. Even with > > > those 3 things, she is pretty good compared to last week. She might > > > even be able to go to school tomorrow. She has a rash, but she has > > > that since the beginning--that has never left us. Her original > > > fever lasted a bit over a month. Do we have that to look forward to > > > again? > > ------------------------------------------------------------------------ > FREE ADVICE FROM REAL PEOPLE! Xpertsite has thousands of experts who > are willing to answer your questions for FREE. Go to Xpertsite today and > put your mind to rest. > 1/1404/1/_/_/_/951263409/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2000 Report Share Posted February 25, 2000 Hi Jody, I hope you were able to find out which meds it was that Jess reacted badly to. After all the work trying to track it down, I bet you won't forget the name of that again How did the joint injections go? I hope it really helps your daughter, and that the improvement lasts for a long time. I give Jess a lot of credit for her perseverence. I hope you have a good weekend, Georgina Jodi Giffin wrote: > Hello all again!! > I knew if I said her itchiness was gone, it would make me regret those > words!! She started itching slightly today, so we'll have to move back to > the stronger 'itch' pill. Jess also had the pain and swelling go up into the > top joint of the thumb on the right hand on Saturday. Last night the pain > started in the left wrist also. They are going to check the thumb and left > wrist before starting the injection on Friday and if those areas need it, > they will inject there also I guess. She had a bad reaction from anesthesia > a couple of years ago when she had her tonsils out, so I went on a wild goose > chase today trying to find out what that drug was. They want to avoid using > that and to add that to her files at Children's. Still haven't found out > what it was, hopefully I will tomorrow. Thought it would be as simple as > phoning the surgeon, not so.......medical records at the hospital, and they > won't disclose info over the phone, have to have it faxed, I don't have one, > or pick it up in person, with photo I.D., of course. Her fatigue level was > improved for a short while, but she seems really tired all the time again. > Sometimes she fights it, and sometimes it just overwhelms her. She refuses > to miss school, in High School it just takes so long to catch back up. I > remind her that the rheumy would help with school issues if need be, but she > just keeps plugging along. Sorry to ramble so......just glad to know I have > all of you........I read the letters on the list as often as I possibly can. > Hope all of the children are feeling better.........my prayers for > all........JODI > > Georgina wrote: > > Hi Jodi, > > > > I'm glad the itchiness is gone! I hope the Sulindac helps Jess and works > > better than the Naprocyn did. Josh started out on Naprocyn too but > > eventually switched to indomethacin. That's been working pretty good for > > him, better than naprocyn or relafen did. It's a good thing there are > > several NSAID's available. Just in case one doesn't work as well as it > > should, there are others to try. I'km amazed the oral prednisone didn't > > work to get rid of the inflammation and pain in your daughter's wrist. I > > hope the injections will bring her relief. I think it's safer and has > > fewer side effects when it's given as a localized injection, instead of > > orally. Is her arthritis limited just to one wrist mainly? > > > > Let us know how the doctor visit goes, > > Georgina > > > > Jodi Giffin wrote: > > > > > > Hi , > > > Don't know how much help I can be, but I'll try. Jess' rheumy said > > > her 6 week flare, at diagnosis, was a 'short' flare. She said they > > > usually last months. We were blissfully flare-free from the week of > > > Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers > > > though. The pain in the wrist came back and has gotten increasingly > > > worse since then. The last round of prednisone did nothing, so we are > > > scheduled for steroid injections this Friday, the 25th. This is our > > > first time with something like this, I posted questions on Sat. but so > > > far no replies from the list, I'm not sure if my letters are coming > > > through to all of you. Jess is still rashy most evenings, but so far > > > we have stayed ahead of the itchiness this time. The original flare, > > > the itching was horrible. Is n on an NSAID, I try to keep all of > > > the kids sorted, but that is nearly impossible. I don't know how > > > Georgina keeps them all straight. I'm glad she has had some > > > improvement over the week-end. Jess is on Sulindac 2x daily. I > > > don't know if that helps keep her from being feverish or not. They > > > just changed her from Naproxen (Naprosyn) last Friday, she had been on > > > that since her first flare in Oct/Nov. Like I said I don't know how > > > much help I can be, but I am trying. Good luck and I hope n > > > keeps on improving daily and gets over this flare > > > as soon as possible. JODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Hi all, Got the papers from the hospital, couldn't read a word of it, but will always keep those papers handy!! The meds they used to sedate her for the injection wasn't one of them. The injection itself went really well. They had told me I could stay with her, but as usual, had to leave her after the sedation took effect. I sat in the waiting room feeling horrible and guilty for about 20 minutes. They came out and got me, and said she was doing great, she was laughing and talking. I was grateful she felt no pain, but seeing your child giddy on drugs is not a pretty picture. We had to go back upstairs to see the rheumy and they wouldn't let her walk (this was after a 30 min. recovery period) so she got to ride around in a wheelchair. She wanted to 'drive' it herself, but considering she was under the influence, I wouldn't let her. The injection was in her wrist, so the fact she wanted to push herself around in it was amazing. They were great there, they put numbing patches where they were going to put the I.V. for sedation, and also one where they were going to put the injection as they were trying to talk her out of the sedation. The rheumy said they would do this, and she came down to see us before the procedure, I told her they were trying to talk us out of it and she said to have the sedation, she didn't want Jess in any more pain than she's already had. I took her to spend the weekend with my Grandma that evening, and she was doing great. Talked to her Sat. evening and she said the wrist was great, not normal, but much better than it has been. They also started her back on prednisone 2.5 mg. daily, just to see if that will take care of the rash, we still are plagued by that. She said the low dose may be enough to take care of that, yet not cause side effects. Time will tell, I guess. She mentioned enbrel and mtx for the first time ever, but I want to wait and see how the injection works. Hopefully, there won't be any more joints involved and we won't have to move on to those meds. Well, sorry again to ramble on so, just so much to tell. My prayers to all! JODI Georgina wrote: > From: Georgina <gmckin@...> > > Hi Jody, > > I hope you were able to find out which meds it was that Jess reacted > badly to. After all the work trying to track it down, I bet you won't > forget the name of that again How did the joint injections go? I hope > it really helps your daughter, and that the improvement lasts for a long > time. I give Jess a lot of credit for her perseverence. > > I hope you have a good weekend, > Georgina > > Jodi Giffin wrote: > > Hello all again!! > > I knew if I said her itchiness was gone, it would make me regret those > > words!! She started itching slightly today, so we'll have to move back to > > the stronger 'itch' pill. Jess also had the pain and swelling go up into the > > top joint of the thumb on the right hand on Saturday. Last night the pain > > started in the left wrist also. They are going to check the thumb and left > > wrist before starting the injection on Friday and if those areas need it, > > they will inject there also I guess. She had a bad reaction from anesthesia > > a couple of years ago when she had her tonsils out, so I went on a wild goose > > chase today trying to find out what that drug was. They want to avoid using > > that and to add that to her files at Children's. Still haven't found out > > what it was, hopefully I will tomorrow. Thought it would be as simple as > > phoning the surgeon, not so.......medical records at the hospital, and they > > won't disclose info over the phone, have to have it faxed, I don't have one, > > or pick it up in person, with photo I.D., of course. Her fatigue level was > > improved for a short while, but she seems really tired all the time again. > > Sometimes she fights it, and sometimes it just overwhelms her. She refuses > > to miss school, in High School it just takes so long to catch back up. I > > remind her that the rheumy would help with school issues if need be, but she > > just keeps plugging along. Sorry to ramble so......just glad to know I have > > all of you........I read the letters on the list as often as I possibly can. > > Hope all of the children are feeling better.........my prayers for > > all........JODI > > > > Georgina wrote: > > > Hi Jodi, > > > > > > I'm glad the itchiness is gone! I hope the Sulindac helps Jess and works > > > better than the Naprocyn did. Josh started out on Naprocyn too but > > > eventually switched to indomethacin. That's been working pretty good for > > > him, better than naprocyn or relafen did. It's a good thing there are > > > several NSAID's available. Just in case one doesn't work as well as it > > > should, there are others to try. I'km amazed the oral prednisone didn't > > > work to get rid of the inflammation and pain in your daughter's wrist. I > > > hope the injections will bring her relief. I think it's safer and has > > > fewer side effects when it's given as a localized injection, instead of > > > orally. Is her arthritis limited just to one wrist mainly? > > > > > > Let us know how the doctor visit goes, > > > Georgina > > > > > > Jodi Giffin wrote: > > > > > > > > Hi , > > > > Don't know how much help I can be, but I'll try. Jess' rheumy said > > > > her 6 week flare, at diagnosis, was a 'short' flare. She said they > > > > usually last months. We were blissfully flare-free from the week of > > > > Thanksgiving until Jan. 3. That's when the rash reappeared, no fevers > > > > though. The pain in the wrist came back and has gotten increasingly > > > > worse since then. The last round of prednisone did nothing, so we are > > > > scheduled for steroid injections this Friday, the 25th. This is our > > > > first time with something like this, I posted questions on Sat. but so > > > > far no replies from the list, I'm not sure if my letters are coming > > > > through to all of you. Jess is still rashy most evenings, but so far > > > > we have stayed ahead of the itchiness this time. The original flare, > > > > the itching was horrible. Is n on an NSAID, I try to keep all of > > > > the kids sorted, but that is nearly impossible. I don't know how > > > > Georgina keeps them all straight. I'm glad she has had some > > > > improvement over the week-end. Jess is on Sulindac 2x daily. I > > > > don't know if that helps keep her from being feverish or not. They > > > > just changed her from Naproxen (Naprosyn) last Friday, she had been on > > > > that since her first flare in Oct/Nov. Like I said I don't know how > > > > much help I can be, but I am trying. Good luck and I hope n > > > > keeps on improving daily and gets over this flare > > > > as soon as possible. JODI > > ------------------------------------------------------------------------ > Get a FREE $10 gas card when you join carclub.com. As a member, > you can save up to $550 a year if you own a car, and thousands > more when you're buying one. > 1/1940/1/_/524922/_/951513826/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2000 Report Share Posted February 29, 2000 Hi Jodi, Thanks for sharing the story of your daughter's joint injection! You explained it all very descriptively, and though we haven't needed to do this yet it's nice to be able to understand what happens in the situation. I hope the pain relief is long-lasting. Take care, Georgina Jodi Giffin wrote: > Hi all, > Got the papers from the hospital, couldn't read a word of it, but will always keep > those papers handy!! The meds they used to sedate her for the injection wasn't one > of them. The injection itself went really well. They had told me I could stay > with her, but as usual, had to leave her after the sedation took effect. I sat in > the waiting room feeling horrible and guilty for about 20 minutes. They came out > and got me, and said she was doing great, she was laughing and talking. I was > grateful she felt no pain, but seeing your child giddy on drugs is not a pretty > picture. We had to go back upstairs to see the rheumy and they wouldn't let her > walk (this was after a 30 min. recovery period) so she got to ride around in a > wheelchair. She wanted to 'drive' it herself, but considering she was under the > influence, I wouldn't let her. The injection was in her wrist, so the fact she > wanted to push herself around in it was amazing. They were great there, they put > numbing patches where they were going to put the I.V. for sedation, and also one > where they were going to put the injection as they were trying to talk her out of > the sedation. The rheumy said they would do this, and she came down to see us > before the procedure, I told her they were trying to talk us out of it and she said > to have the sedation, she didn't want Jess in any more pain than she's already > had. I took her to spend the weekend with my Grandma that evening, and she was > doing great. Talked to her Sat. evening and she said the wrist was great, not > normal, but much better than it has been. They also started her back on prednisone > 2.5 mg. daily, just to see if that will take care of the rash, we still are plagued > by that. She said the low dose may be enough to take care of that, yet not cause > side effects. Time will tell, I guess. She mentioned enbrel and mtx for the first > time ever, but I want to wait and see how the injection works. Hopefully, there > won't be any more joints involved and we won't have to move on to those meds. > Well, sorry again to ramble on so, just so much to tell. My prayers to all! > JODI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 my daughter was diagnosed at less than 1 year with poly articular. went into remission and had a flare up when she was 7. this time it is/was pauci articular. she had serious inflamation in her knee. we did the cortizone injection. it has not flared up in almost 3 years now. 3 year cortizone injection? never look a gift horse in the mouth! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 Hello, That's fantastic, that she had such a good response to the steroid injection. I hope your daughter continues to do very well! Take care, Georgina poohcave@... wrote: > my daughter was diagnosed at less than 1 year with poly articular. went into > remission and had a flare up when she was 7. this time it is/was pauci > articular. she had serious inflamation in her knee. we did the cortizone > injection. it has not flared up in almost 3 years now. 3 year cortizone > injection? never look a gift horse in the mouth! Quote Link to comment Share on other sites More sharing options...
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