Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Dear Kellie, Nice to hear from you and that things are going good. Kate started out with Naproxen but do to bruising and some scarring was taken off and put on Ibuprofen then Methotrexate added. Was pulled off Methotrexate due to liver counts going too high too fast. Is currently on Enbrel injections along with the Ibuprofen, That seems to help keep things under control. Had to have colonoscopy at 4 due to blood in stools but found only small sores or fissures, no stomach bleeding. Is now also on Prilosec to help with reflux problem. It's been a long 3 years! Please don't let me scare you as we were told our daughter has an aggressive case and every child is different. Some meds work fine on one child and not on others. She is now 6 and plays pee-wee basketball and softball. She's like any other child, only difference is some days has flairs and has to take things slower. As far as she's concerned she's no different than anyone else. (Thinks every kid goes to therapy, takes meds., etc...! ) Jra can be sneaky so it's very important to keep up to date with drs. etc... on any questions or concerns. Sounds like your doing good . Please write back and keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 kellie, are you the same kellie that visited the arthritis insight chat? i hope so, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Hi , Oh, you're so right! JRA can be very sneaky indeed : ) Sometimes, even when things seem to be going really well, all of a sudden there's another unexpected flare. Sometimes without rhyme or reason, it seems. It sounds like your little girl has a very positive attitude. That always helps. Sorry to hear that those first couple of years were so hard. I can definitely relate. Hopefully things will stay more balanced from now on. Take care, Georgina Dear Kellie, Nice to hear from you and that things are going good. Kate started out with Naproxen but do to bruising and some scarring was taken off and put on Ibuprofen then Methotrexate added. Was pulled off Methotrexate due to liver counts going too high too fast. Is currently on Enbrel injections along with the Ibuprofen, That seems to help keep things under control. Had to have colonoscopy at 4 due to blood in stools but found only small sores or fissures, no stomach bleeding. Is now also on Prilosec to help with reflux problem. It's been a long 3 years! Please don't let me scare you as we were told our daughter has an aggressive case and every child is different. Some meds work fine on one child and not on others. She is now 6 and plays pee-wee basketball and softball. She's like any other child, only difference is some days has flairs and has to take things slower. As far as she's concerned she's no different than anyone else. (Thinks every kid goes to therapy, takes meds., etc...! ) Jra can be sneaky so it's very important to keep up to date with drs. etc... on any questions or concerns. Sounds like your doing good . Please write back and keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Hi Dee Dee, Just a short note to say hello, and to let you know that I'm really happy to hear that your daughter has had so much improvement in recent weeks. That must be such a relief to all of you. You are definitely right about how a positive attitude can make a big difference. Keep those thoughts in mind, as your daughter starts to decrease the prednisone. Okay? It's not uncommon for a child to have some breakthrough pain and increased symptoms of arthritis when the dose is first lowered. Hopefully, it won't take too long before the methotrexate starts to work. It may become hard for her again, temporarily, during the interim. And you know how hard it can be on us parents, emotionally, to see our children having a hard time. It's sometimes a very delicate balancing act, to try to get things under control well. Don't feel too discouraged if she has some setbacks during the adjustments of meds. keep us updated on how things go, okay? Take care, Georgina Hello , I too am new to JRA as my daughter, , was diagnosed poly-JRA in February. We got to a point when I had to give " piggy-back " rides through the house to get things done (like taking meds, brushing teeth, etc). We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain. Two weeks ago we started prednisone (10mg 1x/day) as we saw no releif with naproxen. OK, I do agree, prednisone is a miracle drug, could write again on her own, walk with less of a limp and got back involved in Tae Kwon Do (which she is a brown belt/red strip - two promotions from a black belt). Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks and 10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg. All I can say is the happiness and playfulness in 's personnality is so wonderful to see back. I hope we figure out the med routine without too much difficulty. I truely believe in a positive attitude ~ which I did not have about a week and a half ago. This is a nice list of people who are sharing in all the same experiences you are and is a wonderful support ~ best of luck! Dee Dee ~ 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Hi , Nice to meet you. Even though I wish it could have been under different circumstances. I think you've stumbled upon a great source of information, right here. This group has quite a few people who have lots of personal experience with JRA. We're able to learn lots from one another. If you have any specific questions just ask ... and if we can, we'll try to offer our advice or suggestions. Has your daughter seen a pediatric rheumatologist yet? If not, that would probably be the best thing you can do for her right now. As helpful as a regular pediatrician may be, these children often need the expertise of a specialist. Is your daughter taking any medication? If so, what? Well, I better say so long for now, or else I'll be the one asking all of the questions : ) Keep in touch, okay? Take care, Georgina Hello out there my name is . we were just told about a month ago that my duaghter p[robably had jra(setm. I am not at all informed on this and I have tried to read up on it but it just seems to loose me even more. Kay-lynn is only 4yrs. She started sleeping alot and having high fevers about 6mths ago. And now here we are. if anyone can give me any info it would be great. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Those pill containers have helped to keep us organized, too : ) Aloha, Georgina Amy, thanks I have recently started that as these pills are getting a little confusing, now the same colors (two of them). I have the one week and each day broken to four parts. It's working! Dee Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Dee Dee, We use a " one weeks " pill box to keep everything straight. I fill it every Sunday. That way there is no guessing on whether something was taken. Amy Re: (unknown) > Hello , > I too am new to JRA as my daughter, , was diagnosed poly-JRA in > February. We got to a point when I had to give " piggy-back " rides > through the house to get things done (like taking meds, brushing teeth, etc). > We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain. Two > weeks ago we started prednisone (10mg 1x/day) as we saw no releif with > naproxen. OK, I do agree, prednisone is a miracle drug, could write > again on her own, walk with less of a limp and got back involved in Tae Kwon > Do (which she is a brown belt/red strip - two promotions from a black belt). > Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks and > 10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg. > All I can say is the happiness and playfulness in 's personnality > is so wonderful to see back. I hope we figure out the med routine without > too much difficulty. I truely believe in a positive attitude ~ which I did > not have about a week and a half ago. > This is a nice list of people who are sharing in all the same > experiences you are and is a wonderful support ~ best of luck! > > Dee Dee ~ 's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Amy, thanks I have recently started that as these pills are getting a little confusing, now the same colors (two of them). I have the one week and each day broken to four parts. It's working! Dee Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 , yes i am the same kellie from the jra world chat. how are you doing? good i hope. feel free to e-mail me anytime ok.. kellie >From: " Hendricks " <brandy_erin@...> >Reply- > >Subject: Re: (unknown) >Date: Fri, 16 Mar 2001 22:59:03 -0500 > >kellie, are you the same kellie that visited the arthritis insight chat? i >hope so, brandy >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 Tom, What is YOUR education level? Did you pass reading? Nowhere was it stated that anyone " got HIV " from drug abuse and unhealthy living. The statement was that their thymus glands were destroyed which is why they had low t-cell counts despite the fact that they were very ill. (Probably ill because of years of substance abuse as well.) Normally sick people would be expected to have high t-cell counts. The only nonsense here is the whole idea of using t-cell counts as a surrogate marker. This was shown to be invalid in the early 90's by the Concorde Study and the study at St. 's as well. Is it simply aging that lessens thymus function? Or is it an accumulation of toxins or other factors? I don't think this area has been sufficiently studied for you to jump to any conclusions. And my name is Ed, not . (Are you sure you can read?) I know of no one on this planet that claims to be HIV+ longer than I have been. I am in great health with no medical intervention. So are the scores of former AIDS victims I've counseled and work with over the past 16 years or so. That says more than any number of initials after my name. If you want to learn three simple things you can do get over AIDS, check out my website at sobehealthy.com. Ed In a message dated 3/16/2001 2:39:33 PM Eastern Standard Time, tomg802@... writes: > , > I have not read anything so offensive and uninformed in years. Stating that > everyone with HIV got it " because many years of drug abuse and unhealthy > living had destroyed their thymus glands " . > > , before you make such claims you ought to study human biology, the > single thymus gland humans are born with naturally stops working in ALL > humans as we age, regardless of health. Before you go spilling off more > nonsense, what exactly is your education level? > Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 Tom I have a degree in Science, majoring in pharmacology. I have not read anything so offensive and uninformed in years. Stating that everyone with HIV got it "because many years of drug abuse and unhealthy living had destroyed their thymus glands". , before you make such claims you ought to study human biology, the single thymus gland humans are born with naturally stops working in ALL humans as we age, regardless of health. Before you go spilling off more nonsense, what exactly is your education level? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 remove me from the group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 well, what a small world, lol. i see you have added me to your msn contact list and i have ok'd it on my end, of course. so, ill see ya online sometime...although i can be a nite owl sometimes. good thoughts to you and family, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 We just started doing this, too and it helps tremendously with my teenager because I was tired of nagging him about his meds and he was tired of hearing it. This way I can just check and see if he has taken them. It also helps him remember because he sees them sitting there. Michele Re: (unknown) Dee Dee, We use a " one weeks " pill box to keep everything straight. I fill it every Sunday. That way there is no guessing on whether something was taken. Amy Re: (unknown) > Hello , > I too am new to JRA as my daughter, , was diagnosed poly-JRA in > February. We got to a point when I had to give " piggy-back " rides > through the house to get things done (like taking meds, brushing teeth, etc). > We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain. Two > weeks ago we started prednisone (10mg 1x/day) as we saw no releif with > naproxen. OK, I do agree, prednisone is a miracle drug, could write > again on her own, walk with less of a limp and got back involved in Tae Kwon > Do (which she is a brown belt/red strip - two promotions from a black belt). > Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks and > 10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg. > All I can say is the happiness and playfulness in 's personnality > is so wonderful to see back. I hope we figure out the med routine without > too much difficulty. I truely believe in a positive attitude ~ which I did > not have about a week and a half ago. > This is a nice list of people who are sharing in all the same > experiences you are and is a wonderful support ~ best of luck! > > Dee Dee ~ 's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Jerry! My prayers are with you and your mom! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Jerry, I'm sorry to hear about you're mother's problem. I'll be thinking of you both. Best wishes. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Jerry: My family prayers are with you and your family. Having suffered a heart attack in October, I know the doctors in the coronary care unit will help her. God bless you Clyde -- =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Jerry, <<<<< hug>>>> I certainly will keep your mother in my prayers. I'll pray for you, too. I know what it's like to have a parent in the hospital. Be sure to take care of yourself, as best you can. Don Terradon Unlimited Creative Embroidery http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: gefox@... [mailto:gefox@...]Sent: Tuesday, March 20, 2001 5:39 PM Subject: [ ] (unknown)dear friends... i`m asking that you offer prayers for my mother... itook her to the hospital today...she has pulmonary edema from either aheart attack or heart failure and she is in coronary care. I know thatprayers do work and I know that this group will help mom.. thankseveryone...love and serenityjerry btw... i got back my second good report in row Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 I will certainly add your mother (and you) to my prayers tonight. Hang in there and remember to take of yourself. AIH (0101) Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Jerry, my prayers are with you and your mom, keep us updated, (Sierra's Mom) --- gefox@... wrote: > dear friends... i`m asking that you offer prayers > for my mother... i > took her to the hospital today...she has pulmonary > edema from either a > heart attack or heart failure and she is in coronary > care. I know that > prayers do work and I know that this group will help > mom.. thanks > everyone... > love and serenity > jerry > > btw... i got back my second good report in row > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Dear Jerry, Our prayers and support are with you and your mom. The Lord does hear us all. God bless you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 - How are things going for you & Sierra? Re: [ ] (unknown) > Jerry, > > my prayers are with you and your mom, > keep us updated, > > (Sierra's Mom) > > > > > --- gefox@... wrote: > > dear friends... i`m asking that you offer prayers > > for my mother... i > > took her to the hospital today...she has pulmonary > > edema from either a > > heart attack or heart failure and she is in coronary > > care. I know that > > prayers do work and I know that this group will help > > mom.. thanks > > everyone... > > love and serenity > > jerry > > > > btw... i got back my second good report in row > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 In a message dated 3/21/01 5:22:43 PM Eastern Standard Time, okieleah@... writes: << The teacher, , 36, was arrested at McDonogh 32 in Algiers. He was booked on two counts of felony cruelty to a juvenile due to the apparent force used in the attack. >> SICK...SICK.....SICK!!!!!!!!!!!!!!! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 yes i did.. lol. hopefully i'll see you online sometime.. >From: " Hendricks " <brandy_erin@...> >Reply- > >Subject: Re: (unknown) >Date: Sun, 18 Mar 2001 22:34:20 -0500 > >well, what a small world, lol. i see you have added me to your msn contact >list and i have ok'd it on my end, of course. so, ill see ya online >sometime...although i can be a nite owl sometimes. good thoughts to you >and >family, brandy >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Hi Roni, Herx reactions can happen anytime that the antibiotic is changed or the dose is changed up or down. Always make any changes gradually by introducing a new antibiotic in tiny doses first and make changes gradually up or down when changing the dose of the antibiotic you're already taking. Chris. >Hello everyone: > >Thanks for all of your help in the past, I have yet >another question being new to this AP. When I started >the minocin I had a herx reaxtion. Then when I added >the biaxin (I started too high too fast) I had a MAJOR >reaction. My hands swelled and that horrible itch >typical of scleroderma came back and my fingers crack at >the slightest touch. This hasn't happened in quite a >while. My hands are somewhat better and still dry and >slightly effected from this last herx. > >Here's my question...Once I go back on the biaxin or >continue with the AP will herxes reoccur or just when >you increase the doseage or add something new? I'm >trying to anticipate what to expect when I get back on >the biaxin (at a lower dose). > >Thanks, >Roni > > > > > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.