Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Dave, Religious waivers are an option, but not always the best option. If you've never looked into religious waivers before, there could be a problem. As you know, military members receive dozens of vaccines through the years. If you're looking into a waiver just because of anthrax, you may open yourself to other disciplinary possibilities; fraud would be the first thing that comes to mind. The punishment could be more severe than what one might receive for simply refusing........Just a though from a fellow SSGT. >From: " DAVID BUZULAK " <buzulak@...> >Reply-onelist >onelist >Subject: flu shot >Date: Thu, 14 Oct 1999 16:32:11 PDT > >To whoever can help me, > >I am a SSG in the service. I have been trying to get a religious waiver >from JAG on all vaccines. They have not really been able to help me. They >don't seem to know what they are doing. Flu shots are coming this next >month. How do I go about avoiding them if I don't get the waiver in time? >Has anyone successfully gotten this waiver? If so, please write and let me >know how so I can inform my JAG. They want to help, they just don't know >how. Thank you in advance. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2000 Report Share Posted January 10, 2000 > Queen Earth wrote: > > From: " Queen Earth " <queenearth@...> > > My friend's grandmother had a flu shot maybe about a month ago. > Shortly thereafter, she became ill with flu-like symptoms. She is now > hospitalized with Pneumonia! I was at a small meeting on Saturday and not quite half of the people there had had the flu recently. One of the older women there said she no longer gets the shots, the last time she had one she was hospitalized for 28 days and she was told by the doctors never to get another one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2000 Report Share Posted January 10, 2000 Hi there, Just as a little aside, I heard recently that the inventor of the flu shot has been known to tell his friends that if they want to get their hands on their inheritance soon rather than later, they should get all their elderly relatives in for a flu shot and that will take care of it. This is the man who created it and he is advocating it as a way to kill off the old. Who on earth would take this after hearing that!? Sheesh! Sherri-Lee Re: Flu Shot > From: & <kelsey1@...> > > > > > Queen Earth wrote: > > > > From: " Queen Earth " <queenearth@...> > > > > My friend's grandmother had a flu shot maybe about a month ago. > > Shortly thereafter, she became ill with flu-like symptoms. She is now > > hospitalized with Pneumonia! > > I was at a small meeting on Saturday and not quite half of the people > there had had the flu recently. One of the older women there said she > no longer gets the shots, the last time she had one she was hospitalized > for 28 days and she was told by the doctors never to get another one. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 http://www.whale.to/Vaccines/flu.html Flu Shot From: " Queen Earth " <queenearth@...> My friend's grandmother had a flu shot maybe about a month ago. Shortly thereafter, she became ill with flu-like symptoms. She is now hospitalized with Pneumonia! I feel so bad for this woman and I believe that the flu shot was the cause of her becoming so ill. Also, my aunt told me my uncle was ill so I asked her if he recently got the flu shot, she said yes. When I mentioned that I didn't think the shot was safe, she jumped to defend it saying that she got the shot and she's ok. I just advised her to do some more research on it, as I'm about to do. If anyone has any information on flu shots, links, books, etc. or anything I may have missed here on the list, please share. Thanks, ------------------------------------------------------------------------------ Please click above to support our sponsor ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 I guess I have been lucky, I work at home and always am washing my hands to keep from catching and spreading germs. I sure hope you are feeling better, I know how it is when your sick and you have little kids to take care of.<br>Last year I was very sick all year it seemed like just when I got better I was sick again, Tyra, I also just bought that book you recommend I but The Thyroid Solution, I really have enjoyed it I a, learning all sorts of things I never knew about.<br>Sunflower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 The book mentioned in the last post, would that be about thyroid conditions? If so I didn't see anything about it, would you mind giving the title again, please? MLJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Dear , I have always been a firm believer in flu shots until now. Last year we got n her flu shot as usual, and four days later she was in a horrible flare (actually the beginning of her arthritis) and ended up in the hospital. We will never know if there is a correlation, but our rheumy told us never to get n a flu shot again. He said that n was his second patient with systemic that he had seen flare within days of a flu shot. So n won't get a flu shot this year. I may live to regret it, but I just don't want to risk a flare. Maybe it was just a coincidence, or maybe it is how her system reacts to the vaccine. We will never know, but I am too scared to take a chance. >From: " Hendricks " <brandy_erin@...> >Reply- egroups > egroups >Subject: flu shot >Date: Sun, 08 Oct 2000 23:51:43 EDT > >i just wanted to recommend getting your jra kids the flu shot. i know they >are tired of shots, but last year was the first year i got one and i didnt >get sick all winter, even when everyone else was on their deathbed! i have >always caught the flu, and had bronchitis for as long as 2 months! every >year. i went to get mine last week, but there is some kind of shortage >here. i will be the first to get it when they get more since jra is >autoimmune, but too late, i am sick already. i am hoping its just a cold, >and taking dimetapp and tylenol sinus to try and keep it from getting >worse, >but i am still taking prednisone for my kidney disease so it might not >work. > anyway, your whole family getting it will decrease your jra childs >chances >of getting sick even better, it will save a lot of flares. goodluck, >brandy >_________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > >Share information about yourself, create your own public profile at >http://profiles.msn.com. > > > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 My children always get the flu shot. My Rheumatologist felt it was best so she would not flare more. Her pediatrician agreed. Just as a note my other daughter gets it because she is Asthmatic. SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Each time I get Skyler a Flu shot he flares. [ & Skyler] flu shot i just wanted to recommend getting your jra kids the flu shot. i know they are tired of shots, but last year was the first year i got one and i didnt get sick all winter, even when everyone else was on their deathbed! i have always caught the flu, and had bronchitis for as long as 2 months! every year. i went to get mine last week, but there is some kind of shortage here. i will be the first to get it when they get more since jra is autoimmune, but too late, i am sick already. i am hoping its just a cold, and taking dimetapp and tylenol sinus to try and keep it from getting worse, but i am still taking prednisone for my kidney disease so it might not work. anyway, your whole family getting it will decrease your jra childs chances of getting sick even better, it will save a lot of flares. goodluck, brandy_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.Share information about yourself, create your own public profile at http://profiles.msn.com.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 October 9, 2000 Report Share Posted October 9, 2000 My daughter has Poly JRA and had never recieved a flu shot until AFTER she got JRA. The Rheumy felt like it was better to take a chance on teh flu shot than to take a risk on her getting the flu. She said not only could the flu make her JRA flare but it could put her in teh hospital with other flu related complications due to a weaker immune system from teh Methotrexate. Rheumy also suggested we as a family get them too so that we don't bring the flu home either as flu shots are not 100%! My understanding was also that this shot is from dead not live viruses and therefore the chances of getting sick from teh shot is slim! (But I've heard that before!) Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 This is my first attempt at this so here goes. My 4 year old daughter was " loosely " diagnosed with Systemic JRA last Fall. After they put her on Plaquenil, Naprosyn & Zantac, her fevers quit getting to 106 and 107. We now only get as high as 103 to 104. The big puzzle with her is that the fevers are every 2 to 3 weeks like clockwork. Every Rheumy she has seen (there have been 6 all across the US) has been puzzled by the fever pattern. But, they have ruled out nearly everything else they can think of including tests at the National Institute of Health. Her sed rate remains elevated (53+ on a good day) and she has had CRP's as high as 24.2 (that is NOT a typo). Naprosyn was recently causing mouth ulcers (so they think) so they have her on 200 mg of Motrin 3 times a day again until they can come up with something else her little body can tolerate. She has had these really bad fevers her entire life, starting at 3 months of age and it seems that nothing can be done to stop them. Hips, knees, ankles, wrists and fingers swell and burn. But rheumy doesn't find any decrease in range of motion. She has had fever episodes followed inpatient in the hospital and they have seen the " flare " for lack of a better term, but I am getting very frustrated with the on again, off again diagnosis. We just recently moved from Missouri to Texas and have had to see a new Ped. Rheumy. He is not changing the diagnosis at this point, but is holding out to see if something else might fit the pattern. Anyone else out there with anything similar? We are frustrated and grasping for any information. Ped. Rheumy still feels comfortable he is dealing with Systemic JRA because he doesn't know what else it could be. Angie flu shot >Ahhh-I always forget something. About the flu shot---both of mine >took it last year. Triggered a small flare but the flu always >triggered large, much larger flares. We asked our rheumy today for >the flu shot but there is some sort of problem with making it this >year. There was a problem with the vaccine to one strain of flu. >Anyhow, there hasn't been any shipped and it will be Nov or Dec >before any is shipped if it continues to go like this. > >There are pros and cons, I guess, with every med. We just have to >weigh our children's health problems and their reactions to different >meds to see what we need to do. Always, always and big puzzle-ain't >it.! Sharon > > > >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 October 9, 2000 Report Share Posted October 9, 2000 This is my first attempt at this so here goes. My 4 year old daughter was " loosely " diagnosed with Systemic JRA last Fall. After they put her on Plaquenil, Naprosyn & Zantac, her fevers quit getting to 106 and 107. We now only get as high as 103 to 104. The big puzzle with her is that the fevers are every 2 to 3 weeks like clockwork. Every Rheumy she has seen (there have been 6 all across the US) has been puzzled by the fever pattern. But, they have ruled out nearly everything else they can think of including tests at the National Institute of Health. Her sed rate remains elevated (53+ on a good day) and she has had CRP's as high as 24.2 (that is NOT a typo). Naprosyn was recently causing mouth ulcers (so they think) so they have her on 200 mg of Motrin 3 times a day again until they can come up with something else her little body can tolerate. She has had these really bad fevers her entire life, starting at 3 months of age and it seems that nothing can be done to stop them. Hips, knees, ankles, wrists and fingers swell and burn. But rheumy doesn't find any decrease in range of motion. She has had fever episodes followed inpatient in the hospital and they have seen the " flare " for lack of a better term, but I am getting very frustrated with the on again, off again diagnosis. We just recently moved from Missouri to Texas and have had to see a new Ped. Rheumy. He is not changing the diagnosis at this point, but is holding out to see if something else might fit the pattern. Anyone else out there with anything similar? We are frustrated and grasping for any information. Ped. Rheumy still feels comfortable he is dealing with Systemic JRA because he doesn't know what else it could be. Angie flu shot >Ahhh-I always forget something. About the flu shot---both of mine >took it last year. Triggered a small flare but the flu always >triggered large, much larger flares. We asked our rheumy today for >the flu shot but there is some sort of problem with making it this >year. There was a problem with the vaccine to one strain of flu. >Anyhow, there hasn't been any shipped and it will be Nov or Dec >before any is shipped if it continues to go like this. > >There are pros and cons, I guess, with every med. We just have to >weigh our children's health problems and their reactions to different >meds to see what we need to do. Always, always and big puzzle-ain't >it.! Sharon > > > >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 October 10, 2000 Report Share Posted October 10, 2000 Email me privately and I will give you the name of an excellent DR. He retired but I heard he will still see a few cases. He was known for his diagnostic ability. A wonderful man. Thanks. WELSMOYEDS@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Dear Angie, Our daughter, n age 11, has systemic JRA diagnosed a year ago. n's fevers would come and go, and we found nothing to control them. Naprosyn and tylenol did nothing. We hated to do it, but the only thing that stopped the fevers was prednisone. We were lucky, she only went on 20mg and the fevers stopped in 24 hours, and we started to taper in 5 days. But as you probably know by now, every child responds differently. I am surprised with it going on this long and with that high of fevers that the doctors never suggested steroids. Many children with systemic who are so sick even take the steroids by IV. >From: " Angie " <atm87@...> >Reply- egroups >< egroups> >Subject: Re: flu shot >Date: Mon, 9 Oct 2000 22:05:18 -0500 > >This is my first attempt at this so here goes. My 4 year old daughter was > " loosely " diagnosed with Systemic JRA last Fall. After they put her on >Plaquenil, Naprosyn & Zantac, her fevers quit getting to 106 and 107. We >now only get as high as 103 to 104. The big puzzle with her is that the >fevers are every 2 to 3 weeks like clockwork. > >Every Rheumy she has seen (there have been 6 all across the US) has been >puzzled by the fever pattern. But, they have ruled out nearly everything >else they can think of including tests at the National Institute of Health. >Her sed rate remains elevated (53+ on a good day) and she has had CRP's as >high as 24.2 (that is NOT a typo). > >Naprosyn was recently causing mouth ulcers (so they think) so they have her >on 200 mg of Motrin 3 times a day again until they can come up with >something else her little body can tolerate. She has had these really bad >fevers her entire life, starting at 3 months of age and it seems that >nothing can be done to stop them. > >Hips, knees, ankles, wrists and fingers swell and burn. But rheumy doesn't >find any decrease in range of motion. She has had fever episodes followed >inpatient in the hospital and they have seen the " flare " for lack of a >better term, but I am getting very frustrated with the on again, off again >diagnosis. > >We just recently moved from Missouri to Texas and have had to see a new >Ped. >Rheumy. He is not changing the diagnosis at this point, but is holding out >to see if something else might fit the pattern. > >Anyone else out there with anything similar? We are frustrated and >grasping for any information. Ped. Rheumy still feels comfortable he is >dealing with Systemic JRA because he doesn't know what else it could be. > >Angie > flu shot > > > >Ahhh-I always forget something. About the flu shot---both of mine > >took it last year. Triggered a small flare but the flu always > >triggered large, much larger flares. We asked our rheumy today for > >the flu shot but there is some sort of problem with making it this > >year. There was a problem with the vaccine to one strain of flu. > >Anyhow, there hasn't been any shipped and it will be Nov or Dec > >before any is shipped if it continues to go like this. > > > >There are pros and cons, I guess, with every med. We just have to > >weigh our children's health problems and their reactions to different > >meds to see what we need to do. Always, always and big puzzle-ain't > >it.! Sharon > > > > > > > >For links to websites with JRA info visit: > >http://www.geocities.com/Heartland/Village/8414/Links.html > > > > > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 We have tried Prednisone, several times. But the fevers still keep coming back. Also, she had severe reaction to normal dose of Prednisone, so they had to cut back. We are at our wits end. flu shot >> >> >> >Ahhh-I always forget something. About the flu shot---both of mine >> >took it last year. Triggered a small flare but the flu always >> >triggered large, much larger flares. We asked our rheumy today for >> >the flu shot but there is some sort of problem with making it this >> >year. There was a problem with the vaccine to one strain of flu. >> >Anyhow, there hasn't been any shipped and it will be Nov or Dec >> >before any is shipped if it continues to go like this. >> > >> >There are pros and cons, I guess, with every med. We just have to >> >weigh our children's health problems and their reactions to different >> >meds to see what we need to do. Always, always and big puzzle-ain't >> >it.! Sharon >> > >> > >> > >> >For links to websites with JRA info visit: >> >http://www.geocities.com/Heartland/Village/8414/Links.html >> > >> >> >> >>For links to websites with JRA info visit: >>http://www.geocities.com/Heartland/Village/8414/Links.html >> > >_________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > >Share information about yourself, create your own public profile at >http://profiles.msn.com. > > > >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 October 11, 2000 Report Share Posted October 11, 2000 Dear Angie, My daughter, Jenna 6, was also diagnosed with systemic JRA in June of this year, it took 5 weeks to diagnose her, she had fevers in the 106's also and one day her arthritis went crazy, they have had her on steroid i.v.'s since, it was only suppose to be for 6 weeks it is now going on 4-1/2 months, she has an appointment with her Rhumy on the 15th and he is going to cut her down some more, has anyone's child been on steroids for this long? Please let me know I am just wondering what to expect when he really takes her off them. Thanks Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 In a message dated 10/11/2000 2:23:40 PM Pacific Daylight Time, lsbakery@... writes: > has anyone's child been on steroids for this long? Please let me know > I am just wondering what to expect when he really takes her off them. has been on them for 2 years, with maybe a week without. She has bad flare up's when the dose gets too low. One of the biggest problems is the weight it keeps on Jen. at 17, she is no small girl, weighing about 250. This does not help her joints, but any exercise, including walking bring on severe pain and swelling, but God bless her, she keeos going. The end of this month will be in a local production of Romeo and t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 i know alittle about the predi my son was on it years ago for his asthma it put weight on him also he lifted weights ALOT also at 16 he was BUILT with muscles the school wanted him on the football team and wrestling team but he had no interest in neither this is just 1 experience i can talk about he had most of the side effects that go with this drug he got tired of them at 16 and refused to take them within a month he had lost 30 pounds melted right off him i called the doctor they ran a battery of tests to see why even did a AIDS test on him because we didnt know why i was worried he was still working out with weights and walking alot his excerise didnt change his eating habits didnt change he shed another 15 pounds he looked BAD skin and bones what the doctor told me was his metabolism had kicked in high gear now and he was going to have to eat 3 meals a day to keep up he is 22 now and thin weighs about 140 to 145 pounds his muscle tone is not as big as it once was but the muscle tone is good he continues to walk alot with melissa i will take a hard look into things before i allow predi with her with voltaren she has gained weight from 79 pounds in feb 2000 to 126 pounds now shes stout and muscle tone is great shes continues to be hungry this i cant to much explain because shes 13 i aint sure if its her body starting to grow or the total medication tell your daughter congradulations on the play Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 My son, Robbie who is 13, has been on steriods for 5 years. He has been on very low doses for the last 2 years, 5 mg/day. He is suppose to be going off... but he is not doing it. He went to 4mg, but then he put himself back to 5mg. This is a problem with the older kids, they take their own meds. He does not think he can make it without the Prednisone. I sure hope he doesn't loose weight when he goes off, he will be 14 next month but only weighs around 80 lbs! Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Jana each child is different the side effects of pred is the weight gain but your son is 80 pounds hes thin then he is also going to be in the puberty stage melissa was only 79 pounds she was thin from what i know on the preds is that some kids have loss appetite some it makes them eat alot with your son i would only give him half a pill but make sure the doctor approves it if this weaning process goes on you should talk with your son about his fears of comeing off the med you never know till you try it you can tell him to try and give him comfort right now i aint sure if theres a long term effect with preds but the least they are on them the better you can always go back to the same mgs if he has problems hope this helps is your son in 8th grade? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Thanks for the kind words, Robin. Yes, Robbie is in the 8th grade. His doctors want him off the Prednisone, he is suppose to be decreasing a mg/month. The Enbrel/MTX combination is working well enough, the doctors think he can do without the Prednisone. He is very fearful of decreasing the Prednisone, he is convinced it is the only thing that makes him feel better. We have tried to get off twice before, with the end result bad flares. No wonder he is fearful. I will keep talking to him and try to get this done. I am worried it is really impacting his growth. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 hi georgina, you r scaring the mess outta me. my kidney docs are bringing off the prednisone really fast and i am terrified that its gonna throw my jra into a fit! i remember a trial i did when i was younger and it crippled me for days when it was over, i havent hurt like that in a long time and i have to tell you, i honestly am scared. they started bringing me down 10mg a week, then when i got 20, they started taking me down 5mg a week, when i got 5(last week)they said to go 2.5 which is today and next friday to nothing. do you think this too fast, i dont feel anything yet, except for headaches? remember that i started at 60mg! thanks, brandy _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Hi Jana, Josh couldn't believe it when I read your message out loud to him. He said he wishes he was Robbie and that he could finally try to get off of prednisone. I reminded him of how bad those flare situations can be and he said " I remember Mom. I just wish I didn't have to take it anymore. And if I get lower, I don't ever want to go back up again. Even if I'm as sore as a rock. " So I told him ~ rocks don't get sore. But when he's sore, he can't do much of anything at all without being in a lot of pain. Actually, Josh right now is still doing really great. On just 9mgs a day, the lowest he's ever been taking. Just yesterday he reminded me that a looonnnggg time ago I promised him that we would have a party if he ever got down to 7.5mgs. I thought I said at 5mgs ... but I'm not gonna' argue Anyway, all our best to Robbie. I know he must worry about what could happen but I think it's worth the chance. Maybe he could try two days at a lower dose, then go up again on the third. Like that. I've heard that works well for many people who have been on it long term. Good Luck. ~Georgina JANABECKER@... wrote: > > Thanks for the kind words, Robin. Yes, Robbie is in the 8th grade. > His doctors want him off the Prednisone, he is suppose to be > decreasing a mg/month. The Enbrel/MTX combination is working > well enough, the doctors think he can do without the Prednisone. > He is very fearful of decreasing the Prednisone, he is convinced > it is the only thing that makes him feel better. We have tried to > get off twice before, with the end result bad flares. No wonder he > is fearful. I will keep talking to him and try to get this done. I am > worried it is really impacting his growth. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Hi Robbin, Yup. There definitely are lots of dangerous side effects from using long-term prednisone. Nearly as bad as the disease itself. Unfortunately, especially for kids with the systemic type of JRA, it's sometimes the only thing that controls the disease well enough. These side effects, for the most part, are not as evident or pronounced with children who use the inhaled version, when taking it for asthma as they are for long-term systemic JRA control. They recently did a study that showed the growth retardation some asthmatic kids have from steroids is not as long-lasting as they had believed. They usually attain their genetically determined adult height. Unfortunately, I don't think this is true for JRA kids. Another problem is that it changes the proportions of body mass. Muscle mass and bone density is lost, while fatty tissue is increased. Which is why so many systemic JRA kids have the puffy cheeks, bloated tummies, and overall short and rounded physical features. I won't even get into that it can cause cataracts, glaucoma, diabetes, avascular necrosis, etc. We face a catch-22 situation. Without steroids, my son might have died. His JRA onset was that severe. That's why i was willing to okay them. Never knew it would take us quite this long to decrease them, though. I believed that as soon as the MTX kicked in, Josh would be off them. It didn't work out like that, though Take care, Georgina Robbin40@... wrote: > > Jana > each child is different the side effects of pred is the weight gain > but your son is 80 pounds hes thin then > he is also going to be in the puberty stage > melissa was only 79 pounds she was thin > from what i know on the preds is that some kids have loss appetite some it > makes them eat alot > with your son i would only give him half a pill but make sure the doctor > approves it if this weaning process goes on > you should talk with your son about his fears of comeing off the med > you never know till you try it > you can tell him to try and give him comfort right now i aint sure if > theres a long term effect with preds but the least they are on them the > better > you can always go back to the same mgs if he has problems > hope this helps is your son in 8th grade? > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Hi , I'm sorry. I should have been more specific. I didn't mean to scare you (or anyone else)! I wasn't talking about a burst of prednisone therapy, when they start you out really high and lower the dose down to nothing really quickly. What they suggested for you is quite normal. I was thinking more in terms of a person whose been taking a semi-high dose over a long period of time. Like Josh, needing to be on 30mgs a day for several months. And then getting the okay to taper down by 5mgs and stay there for several months. The longer you've been on it, the more slowly you need to taper to avoid unwanted side effects. If you're taking 30mgs a day for several months and then decide arbitrarily to just stop taking it, it can cause cardiac arrest, organ system failure. Major troubles. That's why they suggest that people who take steroids daily wear a medic alert bracelet. If they were in a car accident or something and needed an extended hospital stay, and the doctors didn't know they were steroid dependent and didn't provide the needed steroids, it could theoretically kill the patient. But it's common for many conditions to prescribe a quick tapering dose, like the one you're on. I'm really happy for you ... that you get to have the benefits of the steroids when you needed them, and then get to quit them so quickly. That's the way the drug is best used. Long term therapy, though needed in some severe cases of lots of different conditions, has so many drawbacks. I wish they could come up with a viable alternative! All the best, Georgina PS ... I'm really happy that your kidney problems have been treated and seem to be healing. Hopefully the headaches will soon be a thing of the past, too. Hendricks wrote: > > hi georgina, you r scaring the mess outta me. my kidney docs are bringing > off the prednisone really fast and i am terrified that its gonna throw my > jra into a fit! i remember a trial i did when i was younger and it crippled > me for days when it was over, i havent hurt like that in a long time and i > have to tell you, i honestly am scared. they started bringing me down 10mg > a week, then when i got 20, they started taking me down 5mg a week, when i > got 5(last week)they said to go 2.5 which is today and next friday to > nothing. do you think this too fast, i dont feel anything yet, except for > headaches? remember that i started at 60mg! thanks, brandy Quote Link to comment Share on other sites More sharing options...
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