Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 > Can anyone suggest anything I can use or do to minimize the toxic effect of the rituxin. Hi Jackie, sorry you and your husband have to be going through this. With rituxan, my research points towards three major risk factors to take into consideration: 1. If your husband has ever had a severe adverse reaction to a serum (e.g., tetanus vaccine), he is at a higher risk of a severe adverse reaction to rituxan. 2. If he's ever been infected with heptatitis B virus, rituxan is likely to reactivate it. This is new info, most doctors might not be aware of it yet. 3. Rituxan targets both malignant and healthy B lymphocytes; the latter are destroyed and/or suppressed not just during the treatment but for many months afterwards. B lymphocytes are immune system's " memory " of things it has already encountered, and one of their tasks is to " remind " other cells how to respond to any familiar invader -- bacterial, viral or chemical -- that they might have successfully conquered before. Suppressing B lymphocytes renders one's immune system quite incompetent even in familiar situations that were easy to deal with when the cellular memory of how to do it was there. I would take this into consideration and make sure that the overall lifestyle, dietary, detox-oriented, etc. precautions are thoroughly planned and carried out not only during the treatment but as a long term strategy. Good luck, Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Hi: Found this info from Ralph Moss on general Chemo thoughts and figured it was again time to lay out some professional's thoughts on the subject: http://www.cancerdecisions.com/Townsend/Jan2001.html Good luck all, Joe C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 > > I just completed six applications of Rituxan and had no side effects whatsoever. I am 66 and had six rounds of chemo before the Rituxan. I even had a low WBC (2,300) when getting my last application. Hope your husband comes through as easily as I did. > > Dave Hi Dave, I'm glad it was free of side effects for you, but I would like to point out to anyone considering rituxan that most of the severe, and 80% of fatal complications, when they do happen, happen within 24 hours of the FIRST application. In other words, with this stuff, for some people, there simply isn't any trial and error period. Having had adverse reactions to any serum in the past is a warning sign. Anyone aware of such reactions might want to think twice. Another thing you might want to keep in mind is that after a successful course, " side effects " are still going to peak out six to nine months AFTER the completion of the treatment. Anything you do in the interim to support your blood, immune system, and overall health is extremely important, and likely to make a long term difference. Best wishes, Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hi Jackie-- I also have NHL. I had 8 weeks of Rituxan back in July and August, 2002. (I refused chemo since I felt fine and none of my vital organs were directly threatened, even though I was considered to be stage IV -- large tumor in my pelvis, and many smaller tumors in my chest and left arm.) I was worried that the Rituxan would cause some other immune system problem, but I had none. During the year following the Rituxan, I stayed on the macrobiotic diet for cancer patients. The low sugar content of that diet probably discourages the growth of bacteria and fungi. I've been reading all the messages at the NHL-info group for over two years and I have yet to see anyone who posted that Rituxan had caused a problem for them (other than some who had allergic reactions at the time of administration -- which usually were resolved by slowing down the rate of infusion.) Best wishes, S. >> Can anyone suggest anything I can use or do to minimize the toxic > > effect of the rituxin. Hi Jackie, sorry you and your husband have to be going through this. With rituxan, my research points towards three major risk factors to take into consideration: 1. If your husband has ever had a severe adverse reaction to a serum (e.g., tetanus vaccine), he is at a higher risk of a severe adverse reaction to rituxan. 2. If he's ever been infected with heptatitis B virus, rituxan is likely to reactivate it. This is new info, most doctors might not be aware of it yet. 3. Rituxan targets both malignant and healthy B lymphocytes; the latter are destroyed and/or suppressed not just during the treatment but for many months afterwards. B lymphocytes are immune system's " memory " of things it has already encountered, and one of their tasks is to " remind " other cells how to respond to any familiar invader -- bacterial, viral or chemical -- that they might have successfully conquered before. Suppressing B lymphocytes renders one's immune system quite incompetent even in familiar situations that were easy to deal with when the cellular memory of how to do it was there. I would take this into consideration and make sure that the overall lifestyle, dietary, detox-oriented, etc. precautions are thoroughly planned and carried out not only during the treatment but as a long term strategy. Good luck, Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 > I've been reading all the messages at the NHL-info group for over two years and I have yet to see anyone who posted that Rituxan had caused a problem for them (other than some who had allergic reactions at the time of administration -- which usually were resolved by slowing down the rate of infusion.) Hi , this dovetails with what I said about 80% not-so-good reactions occurring in response to the FIRST infusion -- since those who do have reactions might not be in the position to post? However, here's the very first message I saw at a discussion group of Leukemia-Lymphoma Society when I decided to take a second look at rituxan recently. The message is dated October 5, 2004, and has a happy ending, but it is this kind of information I don't quite find easy to disregard, especially considering that the non-happy-endings might not be in the position to give any information at all: (quote) " Hi everybody! I'm new here and I am glad to have found you! I REALLY need to know this. Has anyone else been in that 4-5 % of the population that has trouble with Rituxan? It is a wonderful drug to be sure (after my first infusion my WBC dropped from 72,000 to 8500!) but at what cost? Here's what happened to me: First dose: My ears itched. Second dose: I turned red and broke out in hives. Five days later my temp shot up to 103.7, I couldn't move any of my joints (including my jaw, which is either an asset or a liability, depending on your perspective. HA!) and I was bright red from head to toe. I landed in the hospital for an overnighter. Third dose: My throat closed off and I needed oxygen. The onco suggested I premdicate with Benadryl and prednisone before the fouth dose. Fourth dose: Hives from head to toe, but no oxygen. We're on to something here. I premedicated like a good girl for my fifth dose. Everything is under control! Fifth dose: Anaphylactic shock, oxygen, cardiac adrenaline. Man, can those chemo nurses slap you around when they need to! When I finally came around after three hours, the Rituxan was gone and the onco was sitting there. He said " No more Rituxan for you. You've had enough. " The nurses say that I set some sort of record for adverse reactions and that the onco gave the drug rep quite a tongue lashing when he came for a visit. The up side? The nurses know when a patient is in trouble a lot sooner. " (end quote) So... all is well that ends well, but... I wonder where those percentages of adverse reactions come from, I've seen an array of figures (depending on where you look), they like to keep them on the low side, sure, only trouble is, those low figures are sort of random, and don't seem to coincide at all from source to source... Could they be making them up? I've no idea... Best wishes, Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 " I can only assume with detoxing his body couldn't handle the toxin dyes pumped into him. " I think the same. Imagine our bodies with lots of toxins in them. You add in some more toxins, and it just piles over the rest, slowly working its way into the body. But now that's his bodies cleaner, this time more toxins were added, and instead of pileing and slowly, this stuff just rushed in. That's just what I feel anyways. Just an idea that kind of backs yours? jackie liddell wrote: > My husband was diagnosed with non curable non Hodgkin's lymphoma in September....I have him on the Budwig diet along with a few other things that has really shown an effect in such a short time. With the different things he has been doing and eating healthy mainly raw organic vegetables for 3 months his body is detoxing and helping him a lot even with all the strong pain killers he has to take. He is starting to see the benefits and feel better. His doctor even commented on how well he was looking...> > Last week he had another CT scan and had an awful reaction to it where he was ill for 3 days and unable to keep anything down...... I can only assume with detoxing his body couldn't handle the toxin dyes pumped into him.> > Next Tuesday he starts on a course of rituxin and wonder how his body will react to it even though there are supposed to be no or little side effects. .....Can anyone suggest anything I can use or do to minimize the toxic effect of the rituxin. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Donna-- One effect JRA has on some of the kids is UVEITIS. Once the inflammation gets into the eye it is often very difficult to treat. Often the treatment causes additional problems. In the case of my 8 year old son, he now has Glaucoma and an artifical lens in his eye. These kids usually are on several different eye drops and make weekly visits to eye doctors. Good luck on getting the word out--I have contacted several newspapers in the area only to hear nothing back. I will keep working on it. If you need additional information, let me know and I will get whatever you need. Thanks--Chris > Ok guys I need some help...I have finally talked local news media into doing > a segment on JRA!!!! And just as one would expect the anchor who will be doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 -Donna.. You could talk about MAS, a deadly complication that can occur with Systemic kids. I think its pretty rare, thank goodness, but its out there and does kill.... WTG on getting the word out... you rock! Hugs Helen and (7,systemic) -- In , faces1999@a... wrote: > Ok guys I need some help...I have finally talked local news media into doing > a segment on JRA!!!! And just as one would expect the anchor who will be doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 you could always have them look at the fact that the treatment has side effects bad as the disease, sure not many of us on these meds have had cancer from it, but being hospitlilized for pneumonia, peeing straight blood from a virus attacking my kidneys, and infections that take months to go away instead of days isn't to great either, and the reality there is that its the only option we all have, take the medication that may leave us unable to have kids, puts us at high risk for cancer and infections, and the possibility that it might not even work or let the disease run its course and see how much damage and pain it can cause, inflammation of organs, destruction of joints, and the possibility of blindness for those kids with uveitis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 , I just did a research paper on this topic and if you want some info I will be glad to send it your way, I could send you the whole paper but doubt you want it, it is 9 pages long I could of kept going but thought I should stop. I do not have a figure on just kids, but in 2003 9,500 people died from Arthritis. Or i might be able to give you some sources you do not have. Breedlove Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Donna, How about checking into the stills disease website. They certainly don't sugar coat this disease. www.stillsdisease.org I know there have been some kids on this list that have dealt with pericarditis sp? with the inflammation around the heart caused by arthritis. I think that the suggestion of Uveitis was also a particularly good one and yet a more commonly faced complication. Good luck and thanks for continuing to advocate for a cure! (Aundrea 9 systemic)--- In , faces1999@a... wrote: > Ok guys I need some help...I have finally talked local news media into doing > a segment on JRA!!!! And just as one would expect the anchor who will be doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 What about checking www.spondylitis.org ? They talk about how that disease hits when you are a teenager and continues into adulthood with no known cure yet, and many complications are possible. I do find it kind of sad that in order to get TV time you have to hunt for worst case scenarios, rather than just the fact that children get a disease that makes them hurt and for which there is no cure. What does this say about our TV news? I guess the old saying about news casts is true - " if it bleeds, it leads " . Good luck and I think it is great you are able to get the info out there, no matter how you need to do it. Michele help needed Ok guys I need some help...I have finally talked local news media into doing a segment on JRA!!!! And just as one would expect the anchor who will be doing this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's Disease Too but I need something with major impact. I want to hit the television hard. If some of you could answer the question about the worst effects or send a link I will be so grateful! Thanks to everyone and together we WILL make a difference! Hugs and smiles! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 My thoughts exactly! They want to know the worst which I guess I understand in some ways because the reporter probably thought it " only caused aches and pains " -hah! But what about all the other things--I know I won't remember all I have read on here or we have experienced but some that come to mind--First off there is Tree who is struggling to remain with us on earth which unfortunately is a complication of this disease. No, it does not happen to everybody but there is a risk associated with taking all these wonder drugs. There have been others that you have known that this blasted disease has taken. There is always the risk of infection when we place our children/ourselves on these meds that allow them to have decreased symptoms of this disease or even to excel (like being a champion high jumper-awesome). Let's see I can think of cellulitis, pneumonia, horrible abscesses (since that is on my brain), major infections that these kids have the darndest time getting over. Joint destruction, joint replacement, spontaneous fractures, eye inflammation, rashes, blindness to name just a few. Constant pain, swelling, lethargy, depression. The loss of hopes and dreams--no baseball for a precious 6 year old who wants to play so badly he promises to do anything to be allowed on the field; worries that a young boy won't be able to attend a school field trip because he would have to ride in a wheel chair; staying home because a teenager can't even walk the small mall or through the grocery store; not being able to climb the stairs at a public event and asking to use the elevator and being reprimanded by the staff that " you're a teenager you don't deserve to be on here, go use the stairs " --oh yeh it's happened; not being able to dance when it is your love; having to take multiple pain meds along with your other meds just to be able to go a movie because you can't sit that long; gaining 30 pounds in a few weeks and having the stretch marks and wild mood swings to go along with it as a teenager; not being able to do the typical things a child/teen should be able to because you can't tolerate sitting/standing/walking that long; as a parent watching your child as they cry in the night, in the day or whenever and knowing you have done everything you can and still not able to relieve their pain; the side effects of meds-pain from the injections, nausea, vomiting, gastritis, weight gain, infections, liver damage; having to deal with friends, family, strangers who think " what is the big deal--I have arthritis too, everyone hurts sometimes " when they just don't get it and then they complain that you're the worst parent because you won't consider allergy testing, health supplements, magnet therapy, or whatever their miracle cure is; being told that you're child is faking it or that you are trying to make them into a sick child or whatever their stupid terminology is; joint injections; crutches, wheelchairs, braces, painful physical therapy, multiple doctor appointments; not enough money to provide your child with the treatment they need because it is is prohibitively expensive and then never enough for the extras; joints giving out for no apparent reason and falling down the stairs or passing out; long hospitalizations; IV treatments; systemic damage to heart, lungs, liver; fevers; rashes; extreme pain and swelling; .. Oh my, has this got me thinking..I know there is more but it is really depressing me to think of everything. I know there are those who are able to take meds for awhile and go into a permanent remission and for that we need to celebrate but not everybody is so fortunate and not everyone can get by with just a NSAID. For those who continue to suffer the awareness needs to be there that more funding needs to be available so they too can get to remission. But the problem with remission is that it is not a cure it is just a temporary (but hopefully permanent) disappearance of this despicable disease and until the funding is really there,a cure will never happen and many more will have to face this disease and its effects which include the heartaches it causes and the grief for those we may never meet in person but have come to know and love deeply. e What about checking www.spondylitis.org ? They talk about how that disease hits when you are a teenager and continues into adulthood with no known cure yet, and many complications are possible. I do find it kind of sad that in order to get TV time you have to hunt for worst case scenarios, rather than just the fact that children get a disease that makes them hurt and for which there is no cure. What does this say about our TV news? I guess the old saying about news casts is true - " if it bleeds, it leads " . Good luck and I think it is great you are able to get the info out there, no matter how you need to do it. Michele help needed Ok guys I need some help...I have finally talked local news media into doing a segment on JRA!!!! And just as one would expect the anchor who will be doing this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's Disease Too but I need something with major impact. I want to hit the television hard. If some of you could answer the question about the worst effects or send a link I will be so grateful! Thanks to everyone and together we WILL make a difference! Hugs and smiles! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 I say, forward e's response here to that reporter. Well said, e!! Michele help needed Ok guys I need some help...I have finally talked local news media into doing a segment on JRA!!!! And just as one would expect the anchor who will be doing this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's Disease Too but I need something with major impact. I want to hit the television hard. If some of you could answer the question about the worst effects or send a link I will be so grateful! Thanks to everyone and together we WILL make a difference! Hugs and smiles! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 -Wow e... what a post, you made me cry. I think Donna should print this out and show it to the reporter. It was VERY well said!! Hugs Helen and (7,systemic) -- In , bound for london <boundforlondon@y...> wrote: > My thoughts exactly! They want to know the worst which I guess I understand in some ways because the reporter probably thought it " only caused aches and pains " -hah! But what about all the other things--I know I won't remember all I have read on here or we have experienced but some that come to mind--First off there is Tree who is struggling to remain with us on earth which unfortunately is a complication of this disease. No, it does not happen to everybody but there is a risk associated with taking all these wonder drugs. There have been others that you have known that this blasted disease has taken. There is always the risk of infection when we place our children/ourselves on these meds that allow them to have decreased symptoms of this disease or even to excel (like being a champion high jumper-awesome). Let's see I can think of cellulitis, pneumonia, horrible abscesses (since that is on my brain), major infections that these kids have the darndest time getting over. Joint > destruction, joint replacement, spontaneous fractures, eye inflammation, rashes, blindness to name just a few. Constant pain, swelling, lethargy, depression. The loss of hopes and dreams--no baseball for a precious 6 year old who wants to play so badly he promises to do anything to be allowed on the field; worries that a young boy won't be able to attend a school field trip because he would have to ride in a wheel chair; staying home because a teenager can't even walk the small mall or through the grocery store; not being able to climb the stairs at a public event and asking to use the elevator and being reprimanded by the staff that " you're a teenager you don't deserve to be on here, go use the stairs " --oh yeh it's happened; not being able to dance when it is your love; having to take multiple pain meds along with your other meds just to be able to go a movie because you can't sit that long; gaining 30 pounds in a few weeks and having the stretch marks and wild mood swings to go > along with it as a teenager; not being able to do the typical things a child/teen should be able to because you can't tolerate sitting/standing/walking that long; as a parent watching your child as they cry in the night, in the day or whenever and knowing you have done everything you can and still not able to relieve their pain; the side effects of meds-pain from the injections, nausea, vomiting, gastritis, weight gain, infections, liver damage; having to deal with friends, family, strangers who think " what is the big deal--I have arthritis too, everyone hurts sometimes " when they just don't get it and then they complain that you're the worst parent because you won't consider allergy testing, health supplements, magnet therapy, or whatever their miracle cure is; being told that you're child is faking it or that you are trying to make them into a sick child or whatever their stupid terminology is; joint injections; crutches, wheelchairs, braces, painful physical therapy, multiple > doctor appointments; not enough money to provide your child with the treatment they need because it is is prohibitively expensive and then never enough for the extras; joints giving out for no apparent reason and falling down the stairs or passing out; long hospitalizations; IV treatments; systemic damage to heart, lungs, liver; fevers; rashes; extreme pain and swelling; > . Oh my, has this got me thinking..I know there is more but it is really depressing me to think of everything. I know there are those who are able to take meds for awhile and go into a permanent remission and for that we need to celebrate but not everybody is so fortunate and not everyone can get by with just a NSAID. For those who continue to suffer the awareness needs to be there that more funding needs to be available so they too can get to remission. But the problem with remission is that it is not a cure it is just a temporary (but hopefully permanent) disappearance of this despicable disease and until the funding is really there,a cure will never happen and many more will have to face this disease and its effects which include the heartaches it causes and the grief for those we may never meet in person but have come to know and love deeply. > > e > > > What about checking www.spondylitis.org ? They talk about how that > disease hits when you are a teenager and continues into adulthood with > no known cure yet, and many complications are possible. I do find it > kind of sad that in order to get TV time you have to hunt for worst case > scenarios, rather than just the fact that children get a disease that > makes them hurt and for which there is no cure. What does this say about > our TV news? I guess the old saying about news casts is true - " if it > bleeds, it leads " . Good luck and I think it is great you are able to get > the info out there, no matter how you need to do it. Michele > > help needed > > Ok guys I need some help...I have finally talked local news media into > doing > a segment on JRA!!!! And just as one would expect the anchor who will be > doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided > some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST > EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE > WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the > worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 -My thoughts exactly Michele... Anyone who thinks arthritis is just a few aches and pains should read es post. Hugs Helen and (7,systemic) -- In , " Tepper, Michele " <MTepper@f...> wrote: > I say, forward e's response here to that reporter. Well said, > e!! Michele > > help needed > > Ok guys I need some help...I have finally talked local news media into > doing > a segment on JRA!!!! And just as one would expect the anchor who will be > doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided > some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST > EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE > WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the > worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Wow, you sure said it all! I think that will give Donna all the resource she needs... I hope that was a little therapeutic for you...It was for me just reading it. Sometimes its good to see where you have been just to appreciate the fact that you have made it! (Aundrea 9 systemic)- -- In , bound for london <boundforlondon@y...> wrote: > My thoughts exactly! They want to know the worst which I guess I understand in some ways because the reporter probably thought it " only caused aches and pains " -hah! But what about all the other things--I know I won't remember all I have read on here or we have experienced but some that come to mind--First off there is Tree who is struggling to remain with us on earth which unfortunately is a complication of this disease. No, it does not happen to everybody but there is a risk associated with taking all these wonder drugs. There have been others that you have known that this blasted disease has taken. There is always the risk of infection when we place our children/ourselves on these meds that allow them to have decreased symptoms of this disease or even to excel (like being a champion high jumper-awesome). Let's see I can think of cellulitis, pneumonia, horrible abscesses (since that is on my brain), major infections that these kids have the darndest time getting over. Joint > destruction, joint replacement, spontaneous fractures, eye inflammation, rashes, blindness to name just a few. Constant pain, swelling, lethargy, depression. The loss of hopes and dreams--no baseball for a precious 6 year old who wants to play so badly he promises to do anything to be allowed on the field; worries that a young boy won't be able to attend a school field trip because he would have to ride in a wheel chair; staying home because a teenager can't even walk the small mall or through the grocery store; not being able to climb the stairs at a public event and asking to use the elevator and being reprimanded by the staff that " you're a teenager you don't deserve to be on here, go use the stairs " --oh yeh it's happened; not being able to dance when it is your love; having to take multiple pain meds along with your other meds just to be able to go a movie because you can't sit that long; gaining 30 pounds in a few weeks and having the stretch marks and wild mood swings to go > along with it as a teenager; not being able to do the typical things a child/teen should be able to because you can't tolerate sitting/standing/walking that long; as a parent watching your child as they cry in the night, in the day or whenever and knowing you have done everything you can and still not able to relieve their pain; the side effects of meds-pain from the injections, nausea, vomiting, gastritis, weight gain, infections, liver damage; having to deal with friends, family, strangers who think " what is the big deal--I have arthritis too, everyone hurts sometimes " when they just don't get it and then they complain that you're the worst parent because you won't consider allergy testing, health supplements, magnet therapy, or whatever their miracle cure is; being told that you're child is faking it or that you are trying to make them into a sick child or whatever their stupid terminology is; joint injections; crutches, wheelchairs, braces, painful physical therapy, multiple > doctor appointments; not enough money to provide your child with the treatment they need because it is is prohibitively expensive and then never enough for the extras; joints giving out for no apparent reason and falling down the stairs or passing out; long hospitalizations; IV treatments; systemic damage to heart, lungs, liver; fevers; rashes; extreme pain and swelling; > . Oh my, has this got me thinking..I know there is more but it is really depressing me to think of everything. I know there are those who are able to take meds for awhile and go into a permanent remission and for that we need to celebrate but not everybody is so fortunate and not everyone can get by with just a NSAID. For those who continue to suffer the awareness needs to be there that more funding needs to be available so they too can get to remission. But the problem with remission is that it is not a cure it is just a temporary (but hopefully permanent) disappearance of this despicable disease and until the funding is really there,a cure will never happen and many more will have to face this disease and its effects which include the heartaches it causes and the grief for those we may never meet in person but have come to know and love deeply. > > e > > > What about checking www.spondylitis.org ? They talk about how that > disease hits when you are a teenager and continues into adulthood with > no known cure yet, and many complications are possible. I do find it > kind of sad that in order to get TV time you have to hunt for worst case > scenarios, rather than just the fact that children get a disease that > makes them hurt and for which there is no cure. What does this say about > our TV news? I guess the old saying about news casts is true - " if it > bleeds, it leads " . Good luck and I think it is great you are able to get > the info out there, no matter how you need to do it. Michele > > help needed > > Ok guys I need some help...I have finally talked local news media into > doing > a segment on JRA!!!! And just as one would expect the anchor who will be > doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided > some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST > EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE > WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the > worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 well i do have some links on tiffanies web site that might help also..... i have done a few updates to her site also.... here is the link http://home.earthlink.net/~mscorvette184/index.html maybe a small list of sotries from some of the problematic children (like tiffanie and so many others here on the JRA list) would help tug at there hearts a bit... let them see how it has personaly impacted some of us as a worst case. sometimes a text book worst case dose not hit home till you place a face with a name and condition. i think it is awsome that you have taken this approach to making people aware of JRA... perhaps this is something more of us should try.... -- In , faces1999@a... wrote: > Ok guys I need some help...I have finally talked local news media into doing > a segment on JRA!!!! And just as one would expect the anchor who will be doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Donna, I agree with Helen, that MAS is a major issue - I believe we have lost at least 2 young children to that since I have been on this list. Also, side affects of other long term medications. Many of our children take medications with side affects that typically only adults have to worry about. Didn't we lose a teen last year due to a bleeding ulcer caused by the NSAIDs - it happened before there had been any apparrent symptoms. Feel free to use any of Robbie's story - delayed growth, hypertension, stretch marks and now a compression fracture of a vertebra caused by osteopenia. All of these caused by one medication - and that's just the tip of the iceberg. Somehow we have to find a way to make these people understand that it isn't " just arthritis " - and even if it is - I expect to start having changes in my joints after years of " use " these babies are just beginning - how many of our young muscians, dancers, ball players, potential future pilots, astronauts, surgeons, etc will have to find a different path, different dreams because of this life altering condition, or life altering medications. I think that there are stats on the Arthritis.org website (maybe it was the website connected with the day on the hill) - that listed the number of deaths annually related to arthritis. Val Rob's Mom (7,systemic) Re: help needed -Donna.. You could talk about MAS, a deadly complication that can occur with Systemic kids. I think its pretty rare, thank goodness, but its out there and does kill.... WTG on getting the word out... you rock! Hugs Helen and (7,systemic) -- In , faces1999@a... wrote: > Ok guys I need some help...I have finally talked local news media into doing > a segment on JRA!!!! And just as one would expect the anchor who will be doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 - Hi , You have done a great job with tiffanie's web site she is a beautiful little girl! (Aundrea 9 systemic) -- In , " " <tiffaniesmom01@y...> wrote: > well i do have some links on tiffanies web site that might help > also..... i have done a few updates to her site also.... here is the > link http://home.earthlink.net/~mscorvette184/index.html maybe a > small list of sotries from some of the problematic children (like > tiffanie and so many others here on the JRA list) would help tug at > there hearts a bit... let them see how it has personaly impacted some > of us as a worst case. sometimes a text book worst case dose not hit > home till you place a face with a name and condition. i think it is > awsome that you have taken this approach to making people aware of > JRA... perhaps this is something more of us should try.... > > > -- In , faces1999@a... wrote: > > Ok guys I need some help...I have finally talked local news media > into doing > > a segment on JRA!!!! And just as one would expect the anchor who > will be doing > > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have > provided some > > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE > WORST EFFECTS > > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON > THE WEB FOR > > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > Children's > > Disease Too but I need something with major impact. I want to hit > the > > television hard. If some of you could answer the question about the > worst effects or > > send a link I will be so grateful! > > Thanks to everyone and together we WILL make a difference! > > Hugs and smiles! > > Donna > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 wow,,,, thank you so much!! > > > Ok guys I need some help...I have finally talked local news media > > into doing > > > a segment on JRA!!!! And just as one would expect the anchor who > > will be doing > > > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have > > provided some > > > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE > > WORST EFFECTS > > > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON > > THE WEB FOR > > > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > > Children's > > > Disease Too but I need something with major impact. I want to hit > > the > > > television hard. If some of you could answer the question about > the > > worst effects or > > > send a link I will be so grateful! > > > Thanks to everyone and together we WILL make a difference! > > > Hugs and smiles! > > > Donna > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 i'd love for you to send it my way:) the best email for me is mscorvette184@... 9 pages is not to long for me lol..... > , > > I just did a research paper on this topic and if you want some info I will > be glad to send it your way, I could send you the whole paper but doubt you > want it, it is 9 pages long I could of kept going but thought I should stop. I > do not have a figure on just kids, but in 2003 9,500 people died from > Arthritis. Or i might be able to give you some sources you do not have. > > Breedlove > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Donna, Print out e's Post and send to that Reporter. If you want back up I will stand up and tell this reporter that e said it all in the Post. If he want's more maybe a march on the TV station sidewalk will help. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , I would really like to see your research paper. If you could send it to faces1999@... Thanks! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Wow, e! That is one of the best posts I've ever read conveying how all of us feel about JRA. Would you mind if I copy and pasted it for the JRD group newsletter? JuvenileRheumaticDiseases/ Your post brought tears to my eyes as it was so raw and real. Blessings and (HUGS) Mom to Jessie, polyJRA w/uveitis JRD Group Support Specialist > My thoughts exactly! They want to know the worst which I guess I understand in some ways because the reporter probably thought it " only caused aches and pains " -hah! But what about all the other things--I know I won't remember all I have read on here or we have experienced but some that come to mind--First off there is Tree who is struggling to remain with us on earth which unfortunately is a complication of this disease. No, it does not happen to everybody but there is a risk associated with taking all these wonder drugs. There have been others that you have known that this blasted disease has taken. There is always the risk of infection when we place our children/ourselves on these meds that allow them to have decreased symptoms of this disease or even to excel (like being a champion high jumper-awesome). Let's see I can think of cellulitis, pneumonia, horrible abscesses (since that is on my brain), major infections that these kids have the darndest time getting over. Joint > destruction, joint replacement, spontaneous fractures, eye inflammation, rashes, blindness to name just a few. Constant pain, swelling, lethargy, depression. The loss of hopes and dreams--no baseball for a precious 6 year old who wants to play so badly he promises to do anything to be allowed on the field; worries that a young boy won't be able to attend a school field trip because he would have to ride in a wheel chair; staying home because a teenager can't even walk the small mall or through the grocery store; not being able to climb the stairs at a public event and asking to use the elevator and being reprimanded by the staff that " you're a teenager you don't deserve to be on here, go use the stairs " --oh yeh it's happened; not being able to dance when it is your love; having to take multiple pain meds along with your other meds just to be able to go a movie because you can't sit that long; gaining 30 pounds in a few weeks and having the stretch marks and wild mood swings to go > along with it as a teenager; not being able to do the typical things a child/teen should be able to because you can't tolerate sitting/standing/walking that long; as a parent watching your child as they cry in the night, in the day or whenever and knowing you have done everything you can and still not able to relieve their pain; the side effects of meds-pain from the injections, nausea, vomiting, gastritis, weight gain, infections, liver damage; having to deal with friends, family, strangers who think " what is the big deal--I have arthritis too, everyone hurts sometimes " when they just don't get it and then they complain that you're the worst parent because you won't consider allergy testing, health supplements, magnet therapy, or whatever their miracle cure is; being told that you're child is faking it or that you are trying to make them into a sick child or whatever their stupid terminology is; joint injections; crutches, wheelchairs, braces, painful physical therapy, multiple > doctor appointments; not enough money to provide your child with the treatment they need because it is is prohibitively expensive and then never enough for the extras; joints giving out for no apparent reason and falling down the stairs or passing out; long hospitalizations; IV treatments; systemic damage to heart, lungs, liver; fevers; rashes; extreme pain and swelling; > . Oh my, has this got me thinking..I know there is more but it is really depressing me to think of everything. I know there are those who are able to take meds for awhile and go into a permanent remission and for that we need to celebrate but not everybody is so fortunate and not everyone can get by with just a NSAID. For those who continue to suffer the awareness needs to be there that more funding needs to be available so they too can get to remission. But the problem with remission is that it is not a cure it is just a temporary (but hopefully permanent) disappearance of this despicable disease and until the funding is really there,a cure will never happen and many more will have to face this disease and its effects which include the heartaches it causes and the grief for those we may never meet in person but have come to know and love deeply. > > e > > > What about checking www.spondylitis.org ? They talk about how that > disease hits when you are a teenager and continues into adulthood with > no known cure yet, and many complications are possible. I do find it > kind of sad that in order to get TV time you have to hunt for worst case > scenarios, rather than just the fact that children get a disease that > makes them hurt and for which there is no cure. What does this say about > our TV news? I guess the old saying about news casts is true - " if it > bleeds, it leads " . Good luck and I think it is great you are able to get > the info out there, no matter how you need to do it. Michele > > help needed > > Ok guys I need some help...I have finally talked local news media into > doing > a segment on JRA!!!! And just as one would expect the anchor who will be > doing > this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have provided > some > stats and basic info but she has asked " FOR IMFORMATION ABOUT THE WORST > EFFECTS > OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON THE > WEB FOR > THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A > Children's > Disease Too but I need something with major impact. I want to hit the > television hard. If some of you could answer the question about the > worst effects or > send a link I will be so grateful! > Thanks to everyone and together we WILL make a difference! > Hugs and smiles! > Donna > > > Quote Link to comment Share on other sites More sharing options...
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