Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Welcome Cheryl! I'm sorry to hear about your dx's, but glad that your here. You have found a great group of people. I am looking forward to get to know you, and just know your always welcome here, T > > > Hi All, > My name is Cheryl.I have been dx with lupus,fibro,and a whole big > list of things that go with all of these " pleasant " illnesses. > I am 36,i have 3 kids,a son who is also dx with fibro,and a > husband in the military. > I hope to make many new friends here,and that you will include > me in your conversations.(lol) I love to chat and get to know > people. > Lupie Hugs, > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Welcome Krissy. Sorry for your reasons for being here, but glad you found us. You will find many wonderful caring and understanding people here. a > > > > My name is Krissy. I am 24 years old and have had RA since I was 16. > There are no support groups in my area (Albany, GA) and sometimes I > get a little frustrated with things and need people who understand to > talk too. Hopefully this group will help and I can help some others > as well. My email is krisanna80@.... - Thanks, Krissy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 So far, the response I have gotten has been great. My RA is moderate. I have nodules on one of my elbows and somehow, the podiotrist (spelling is off) said the the disease had gotten into my pinky toe on my right foot and pushed the " proximal phalanx " out and dislocated it self from my 5th metatarsel - (actually pretty scarry looking, looks like i have a tumor growing out the side of my foot.) but it practically causes no pain which i am thankful for! But it causes me to have a very wide shoe!! about a EE b/c it is so wide. but i still an able to use all my limbs which I am thankful for. I do have problems bending my left wrist - its been that way for such a long time. but I love reading the posts. If anyone has any questions for me, please let me know! Krissy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Krissy, Welcome to the group. I am a little slow because I only have the internet at work I am still trying to read all the posts. I have not been here long myself. I have had RA for about a year now. I am 39. Everyone has been very helpful to me. Beth > > So far, the response I have gotten has been great. My RA is moderate. I have nodules on one of my elbows and somehow, the podiotrist (spelling is off) said the the disease had gotten into my pinky toe on my right foot and pushed the " proximal phalanx " out and dislocated it self from my 5th metatarsel - (actually pretty scarry looking, looks like i have a tumor growing out the side of my foot.) but it practically causes no pain which i am thankful for! But it causes me to have a very wide shoe!! about a EE b/c it is so wide. but i still an able to use all my limbs which I am thankful for. I do have problems bending my left wrist - its been that way for such a long time. but I love reading the posts. If anyone has any questions for me, please let me know! > > > > Krissy > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Cheryl, Welcome to the group. I hope you find as much comfort and help here as I have. Beth > > > Hi All, > My name is Cheryl.I have been dx with lupus,fibro,and a whole big > list of things that go with all of these " pleasant " illnesses. > I am 36,i have 3 kids,a son who is also dx with fibro,and a > husband in the military. > I hope to make many new friends here,and that you will include > me in your conversations.(lol) I love to chat and get to know > people. > Lupie Hugs, > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Hi. I am also 34 and I've had RA for a little over a year. It is unusual to get a diagnosis before seeing a rheumatologist. Usually doctor will suspect RA, and let the rheumatologist assess you and make a diagnosis. A diagnosis is usually made over time, obvserving your symtpoms and reactions to RA treatments. What did your doctor say? Were any medications prescribed for you? When do you see the rheumatologist? This is a great diverse group of men and women with RA and other diseases. a and , our moderators, post all kids of research and information. If you visit the website, you can read through past postings and get up to speed on RA, latest treatments, and the way a lot of us cope with having a chronic illness. Please, as as many questions as you can think of. We're all here to answer and help. Jennie > > > Hi, > > I am a 34 yr. old female who just got RA diagnosis TODAY. I am the > type that will read everything i can get my hands on about a health > issue. i also have found that support groups like this one are > extremely helpful. the dr. said i am in the very early stages of RA > and she referred me to a rheumatologist. so right now I am just > looking for anyone that can give me info. or tell me how far this > thing could progress. i am pretty panicked right now. > > thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Hi. It's me again. I also meant to say don't panick. There is more known about effective treatment of RA today more than any time in the past. Having RA used to mean disfigurement and disability. Today, with aggressive treatment with medication people with RA have a good chance at leading fairly normal lives. Knowing about the latest drugs is important, but it can be overwhelming at first. So stick around, read a lot and ask lots of questions. Jennie > > > Hi, > > I am a 34 yr. old female who just got RA diagnosis TODAY. I am the > type that will read everything i can get my hands on about a health > issue. i also have found that support groups like this one are > extremely helpful. the dr. said i am in the very early stages of RA > and she referred me to a rheumatologist. so right now I am just > looking for anyone that can give me info. or tell me how far this > thing could progress. i am pretty panicked right now. > > thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Welcome to the group! Please don't panic. First, do go and see a rheumatologist to get a confirmation of the diagnosis. If it is indeed RA, keep in mind that not everyone has severe disease. Treatment and monitoring of RA is far better today than it has been in prior years. Even for those with the most severe RA, there is much hope for the future. Our list owner and lead moderator, a, has compiled a wealth of information on RA and other rheumatic diseases at her Web site: http://rheumatoid.arthritis.freehosting.net You can learn much there. Specific questions can be asked of the group, and we'll do our best to attempt to answer them. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New Member > > > > Hi, > > I am a 34 yr. old female who just got RA diagnosis TODAY. I am the > type that will read everything i can get my hands on about a health > issue. i also have found that support groups like this one are > extremely helpful. the dr. said i am in the very early stages of RA > and she referred me to a rheumatologist. so right now I am just > looking for anyone that can give me info. or tell me how far this > thing could progress. i am pretty panicked right now. > > thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 I think it's perfectly normal to automatically think the worst, but try not to panic too much, especially since you haven't seen a rheumatologist yet. When I first started having random joint pain, my primary doctor was convinced that I did not have RA because my symptoms didn't fit the pattern. He ran a rheumatoid factor test along with lupus, lyme disease, and everything else but he was convinced that the pain was due to low thyroid since I also had some swelling in my thyroid gland. Well, a few days later as I was driving 70mph down a highway to see my parents, his nurse called and said, " you appear to have rheumatoid arthritis. We're sending out some prescriptions, you need to get your hands xrayed asap, and I've made you an appointment with a rheumatologist. " I almost drove off the road! Then I called my husband in hysterics about it. When I went back to the doctor a couple of weeks later, he said that my RF test was positive but my xrays were clear, and he STILL believed that I did not have RA. So his nurse sort of jumped the gun a bit. OK, in my case it turned out that I DO have it, but it wasn't until a year later that my rheumatologist was able to make that diagnosis based on all my symptoms, not just a single blood test. The point I'm trying to make is that sometimes primary doctors (or their nurses, I guess) are quick to call the problem RA when there's really not enough evidence there yet. So just hang in there and try not to panic. BTW, with the medication I'm on, I currently have ZERO symptoms--really no pain at all and no drug side effects--and my doctor says he's very hopeful that my case will be relatively mild. I feel very fortunate so far, and like said, it doesn't always turn out to be severe. In , " karamid3232 " <karamid3232@y...> wrote: > > > Hi, > > I am a 34 yr. old female who just got RA diagnosis TODAY. I am the > type that will read everything i can get my hands on about a health > issue. i also have found that support groups like this one are > extremely helpful. the dr. said i am in the very early stages of RA > and she referred me to a rheumatologist. so right now I am just > looking for anyone that can give me info. or tell me how far this > thing could progress. i am pretty panicked right now. > > thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 The first thing to do is DO NOT PANICK! Worry or anxiety will cause it to get worse, so start by gtting your emotions under control. It took me a long time to get that through my head. Even now, after 15 years with this mess, I still cause it to get stronger sometimes, but it reminds me each time. My MD diagnosed me on the first visit for this problem. He took a while to give me prednesone, and then only 5 mg per day. It really helped at that time. After a couple of months, he sent me to a Rheumy, and the rest is history. You, personally, don't have much control over the RA, it's more like it controls you, at least it is in my case. Not meaning to scare you, but I was bedridden for about 2 years, and now it's just a battle with fatigue and depression more than the pain being caused. I haven't found meds that work for that so far. If any of you bottle meds for the " don't's " let me know. Dennis [ ] New Member > > > > Hi, > > I am a 34 yr. old female who just got RA diagnosis TODAY. I am the > type that will read everything i can get my hands on about a health > issue. i also have found that support groups like this one are > extremely helpful. the dr. said i am in the very early stages of RA > and she referred me to a rheumatologist. so right now I am just > looking for anyone that can give me info. or tell me how far this > thing could progress. i am pretty panicked right now. > > thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi, Joyce. Not sure if anyone else has reponded, I haven't finished going through my emails, but thought I would chime in that a DMARD (disease modifying anti rheumatic drug) might be needed. If your daughter is on an anti inflammatory only (which is what I think Tolmetin must be?) after all this time and she is not really getting the JRA under control, the next step is DMARD's. Soemthing like sulfasalazine or methotrexate or one of the newer ones like Enbrel can go along way to helping your daughter and perhaps making it so she does not have the pain come back every few months. The JRA is not under control if the pain keeps coming back. Does your daughter see a ped rheumy? That type of dr really understands JRA kids the best. Good luck to you, and post any questions you might have. Michele ( 17, pauci & spondy) New Member Hi everyone! I have an 8 year old daughter with JRA. Only 1 knee has been affected and since just before age 2. She has been on Naproxen which after a while caused pseudoporphoria(?), or red spots on her face, then Motrin, and now Tolectin/Tolmetin. She has been very lucky, in that she rarely has stiffness, pain or any loss of activity. It just seems to keep coming back whenever she's off the meds for a few months. Total time on med has been 5 of her 8 years. She just recently went back on Tolectin after 1.5 months off and now has atrophy in thigh and calf, so we're doing some physical therapy. My question now would be, what other options are likely to come up? Will she be on this med for more years? Is it likely she will grow out of it at some point? She had a shot in her knee a few years ago and it didn't seem to help that much. Is it likely the Dr might suggest trying another shot? What about trying other meds? Thanks, Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 > One other thing, I live most of the year in a tropical country and am > very interested in any ideas with fermenting tropical foods. > > Thanks. > Hi , I am new to fermenting as well. Perhaps it is luck or years of experience cooking, but I have made gallons of goodies this autumn without failure <knock on wood>. I haven't done too much in the way of fruit, but did made a cranberry relish which was marvelous, and a kefirkraut with milk kefir grains, red cabbage, tamarind, raisin, apple and spice. It is great. Using a kefir grain or other starter might help you with fruit success. http://users.chariot.net.au/~dna/kefirkraut.html But then, I am not the expert that many on this list are. Happy fermenting! Deanna in TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Deb, welcome to the group! I use to take Prednisone, but that is one med that I wouldn't won't to stay on for long. I do the tapers when needed, but that med makes me have terrible side effects. It does work well with some, and that is what keeps them going. So, meds work well for some, and not for others. I just feel whatever helps, if it keeps you mobile. I'm glad you got your disability, you can go to a good doctor, and maybe he can try you on some newer meds, there is more options now. I'm glad that you have Abbey, pets are remarkable. They are so loving, and it seems like when your at the lowest they know, and can make you feel better. I had a black lab, that I recently had to give up. I couldn't take care of him anymore, he was just too much for me. He weighed quite a bit, and just couldn't handle him. I did give him to a very good couple, who lives a few blocks away. I can visit him anytime, but it's hard on both of us right now. Were all here in need of support and good friends. Please feel free to email me anytime, I'm always here if someone needs me. Tawny > > > Hello everyone, I am new to this site, my name is Deb and I am 51 > years old. I was wondering if anyone out there has been on long term > Prednisone use for their RA. I was diagnosed 3 years ago, and have > been taking it ever since. I was on 40 mg. a day for a long time, > and have managed to get it down to 20-25 mg. a day depending on the > pain. The side effects are sooooo much fun. NOT! I also take > Methotrexate and Celebrex. It has taken me all this time to finally > get my SSI Disability, and Medicaid, so I am now scheduled to see a > Rheumatologist in February, up until now I have only been seen in a > Hospital Clinic. I also have Hypo-thyroidism, and the prednisone > has caused Diabetes. Anyway, I was wodering if anyone knows of any > specific drug that works as well as " the Magic Pill " Prednisone, > without all these side effects, it sure would be a blessing to find > one. I also would like to say that it sounds like most of you have > a significant other or family members that help and support you > all. I lost everything when I became sick, my sig. other left me, > and I have no living family.But I do have my Dog, Abbey, she is a > God send and good companion. She is deaf, but we have > learned " Doggy Sign language " together, it keeps us busy. So, I > mostly just stay in the house, afraid of getting sick from others, > and it can be lonely. If it wasnt for the Computer and Abbey I > would go crazy. I have good days and bad ones where I cant even get > out of bed, but I look at the alternative and am thankful for what I > do have. Any info any of you might have would be greatly > appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hello Deb, Welcome to the group! I an 58, and while I don't have RA, I do have Dercum's Disease, which is sort of like fibromyalgia plus hundreds of painful fatty tumors throughout the body. I have been on a few short courses of prednisone, both for the pain (until they found out what was wrong with me) and for asthma. I can't take pred. now because it aggravates the tumor growth. I take only diclofenac, Ultram, and Remeron. That combination keeps me functioning without being a zombie, and I am learning to live with the pain, though I'd just as soon not have it! My husband is 67 and has Parkinson's, so we help each other through our individual down days. sorry to hear your sig. other couldn't hack the challenge, I don't know what I'd do without Ron. Keep the faith, Judi in Indiana (by way of Illinois & California) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Deb. My name is Marina. I was diagnosed a little over 2 years ago at the age of 32 and have spent most of that time on Prednisone. I started out with the lower doses, but, it would eventually stop working and my dose would be bumped up. At one point I was taking nearly 100mg a day. With Remicade, I was able to taper down. At one point I was actually off of them. Then we tried Enbrel. Still taking that and not the steroids, except when needed. I have been tapering off of them again over the last few weeks. The Enbrel was effective and it worked within the first 2 weeks. Unfortunately, there are no quick fixes and what fixes that are out there have there consiquences. But, not to the extent of long term steroid use. My rheumatologist told me he would rather me take narcotics through out the day everyday than to take steroids. This disease is hard on families as well. Especially when they don't understand. It's difficult for anyone to " get it " when they don't go through it. I am having that issue with my sister, brother, and father. They try, and I appreciate their efforts, but they don't get it. I'm afraid to get into any " real " relationship because I don't want to wish this onto anyone else. My 2 cats have been my saving grace, well, them and this group. We are all like brothers and sisters in here, understanding what the other goes through. For the first time since my diagnosis, I felt as though I was liberated from it because I could talk about it freely and others would listen and understand. That makes such a difference. I hope you get hooked up with a good rheumatologist. That is of utmost importance. Perhaps, once you get off the steroids, the diabetes will reverse itself. I have been fortunate to not have had the blood sugar issue. That sounds like a challenge, having a deaf dog. Must make things interesting!! My 2 cats sure act deaf at times!! But, a dog comes when called and a cat takes a message and gets back with you later!! Welcome to the group. Feel free to ask questions and even to just write to vent!! It helps!! Take care.....Blessed Be........Marina in Ohio > > > Hello everyone, I am new to this site, my name is Deb and I am 51 > years old. I was wondering if anyone out there has been on long term > Prednisone use for their RA. I was diagnosed 3 years ago, and have > been taking it ever since. I was on 40 mg. a day for a long time, > and have managed to get it down to 20-25 mg. a day depending on the > pain. The side effects are sooooo much fun. NOT! I also take > Methotrexate and Celebrex. It has taken me all this time to finally > get my SSI Disability, and Medicaid, so I am now scheduled to see a > Rheumatologist in February, up until now I have only been seen in a > Hospital Clinic. I also have Hypo-thyroidism, and the prednisone > has caused Diabetes. Anyway, I was wodering if anyone knows of any > specific drug that works as well as " the Magic Pill " Prednisone, > without all these side effects, it sure would be a blessing to find > one. I also would like to say that it sounds like most of you have > a significant other or family members that help and support you > all. I lost everything when I became sick, my sig. other left me, > and I have no living family.But I do have my Dog, Abbey, she is a > God send and good companion. She is deaf, but we have > learned " Doggy Sign language " together, it keeps us busy. So, I > mostly just stay in the house, afraid of getting sick from others, > and it can be lonely. If it wasnt for the Computer and Abbey I > would go crazy. I have good days and bad ones where I cant even get > out of bed, but I look at the alternative and am thankful for what I > do have. Any info any of you might have would be greatly > appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Hi Sherri, welcome to the group! It's a great place to be, lots of information, and wonderful people, Tawny > > Hi All! My name is Sherri and I live in Rochester,. Pa. Was diagnosed at the > age of 34-while recovering from a total knee replacement-with RA. It runs in > the family, but thus far, I am the only one to get it fromthis generation of > kids!!!!! Lucky me! I am married and live with DH and 2 cats and 1 spoiled > Yorkie., Work as a Registered Nurse in the OB/Gyne dept of a local hospital. > Currently taking Embril and pred.-plus Darvocet for the pain. Love to chat > and email!!!! sherri > > > > Stay strong and healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Hi and Welcome! I'm a 40 year old mom of an 18 year old boy. I have RA also, and work full time-I'm a registered nurse. I take Plaquenil, also Remicade, Bextra and right now, Prednisone due to a long unrelenting flare for about the last 6 months. This list is full of wonderful support and info, and as I neglected to tell the fellow I replied to a moment ago, there are even a few men on the list! Take care, rest and Happy New Year. Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Welcome to the group. Sorry that you have RA at such a young age. Luckily, I didn't get it until I was 60. I'm glad that the plaquenil is working well for you. Hopefully it will continue to do so, but if not, there are plenty of other drugs to try. You will find that this is a wonderful group to belong to. We usually do know what to say, because we know how you feel. a and , our moderators, post lots of articles to keep us informed about autoimmune diseases. I think you'll like it here. Sue On Thursday, December 30, 2004, at 10:57 PM, millerfamily44 wrote: > > Hi, I am a new member looking for support.....and to learn something > about RA and how to deal........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Welcome to the group! I'm glad you found us, but sorry for your dx. There are many RA patients that don't have a RF. I'm glad your doc has put you on Plaquenil, is it working for you? You will find support, and people that understand what your going through, so count on us if you need us. God Bless, Tawny > > > Hi, I am a new member looking for support.....and to learn something > about RA and how to deal........I am 36, mother of a 2 year old son > and a 1 year old daughter. I do not have the RF factor, but my > rheumatologist believes that it is RA. She has ruled out Lupus, and > has done a million other tests. I have been on plaquenil for 4 months > now and it has finally kicked in, and I have been able to get off of > prednisone completely. Anyone have luck with plaquenil? I don't know > anyone with RA, and I am not sure what lies ahead.......I think that > is the scariest part for me. My husband doesn't know what to say, > and neither do my parents or friends. I am a guidance counselor, and > my boss and colleagues are wonderful, and have been very accomodating > when I have dr visits. I could not ask for more flexible working > conditions. Well, hopefully I will get the hang of this online group > (never did this before) and will be able to find the support I am > looking for! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 I, too, have Fatty Liver Disease, diagnosed by a biopsy and other tests 4 years ago, and numerous blood tests since. My GI tells me, I definitely do not have any other kind of liver disease, but I do have Liver Cirrhosis with the Fatty Liver Disease. I have been studying all the liver problems and all our symptoms seem to be very similar. And very confusing. I am not sure what your numbers mean, I am not familiar with them. I am looking forward to hearing from members who know more than I do. How can one tell the difference from one type to another type of liver disease? What do all those numbers mean? What is Beta-gamma bridging? What is IFE? Welcome to the group! Clara from OR [ ] New member Hello,My name is Jeanette. I have been diagnosed with liver disease on January 3, 2005. I don't really agree with the findings on the ultrasound that stated I have Fatty LIver Disease. For the past 2 years,I have researched all my labs and the internet. I was trying to prove that I had liver disease along time ago. In my researched,I have found that my labs and symptoms point to Autoimmune Liver Disease. I would appreaciate it if you all could take a look at my results below and tell me what you think.2002,2003 and 2004:ANA: 1:40 ANA: 1:80ELP GAMMA: 1.75 IGG SERUM: 1940 The findings: ELP T Protein: Beta-gamma bridging. Polyclonal increase in the gamma region. IFE shows a polyclonal increase in IgG. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Welcome! Please feel free to make use of our most excellent search engine at: http://onibasu.com New Member Hello from west central Louisiana. I found a link to this site on the ForageAhead site that I'm a member of. I'm interested in back-to- basic, primitive, time tested technologies and wisdom. The way I see it, learning to do with less or doing things the " old fashioned way " are things we should practice and not let any more of the knowledge be lost. We or our children may need it someday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Welcome to the group, it is very interesting. Your ForageAhead group looks interesting too. ---Carol lawildbeing <lawildbeing@...> wrote: Hello from west central Louisiana. I found a link to this site on the ForageAhead site that I'm a member of. I'm interested in back-to-basic, primitive, time tested technologies and wisdom. The way I see it, learning to do with less or doing things the " old fashioned way " are things we should practice and not let any more of the knowledge be lost. We or our children may need it someday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Hi Jerry, I am on my way to bed, but wanted to wish you a quick welcome to our little corner of the world.........even though i wish none of us had to meet because of this disease, i am so thankful everyday for the friends i have made over the years on this list........any questions just holler, there are plenty of us here more than likely having gone thru what you are asking about. Luv and hugs, Aj and Holly 11yrs (diagnosed 9/94) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Jerry: Welcome to the group. You have found a wonderful source of support. WIth your son so newly diagnosed, it is very understandable that you are still quite upset. It gets better. You will also find that you will have emotional setbacks, also understandable, when all of a sudden, when you are used to this unusual disease being a normal thing in your life now, that it will hit you that it shouldn't be this way. We all go through this. But do give yourself a break and allow yourself to grieve that your child has this illness. On the other hand, in this group, you will find much hope!! There are many new drugs out on the horizon, as well as some being used currently, and I would say a good portion of the children with JRA are having pretty good results. They have hope of avoiding the severe joint damage. Most rheumatologists are treating aggressively and are more aware of the fact that the sooner they can get a child controlled, the better off they will be. My son couldn't walk when first diagnosed, and he is doing much better now. With all the new drugs in development, we are very hopeful for his future. and Rob 15 Spondy On Wed, 02 Feb 2005 14:18:10 -0000 " thundercatsmom " <lumineri@...> writes: Hello, I joined the group yesterday. I was very excited to find it! My son, Logan (5 years old), was diagnosed with severe poly JRA the week before Christmas. I've been up and down emotionally in the past month, but thought I'd come to terms. Reading some of your posts brought a lot of that back to me. I think I'm still shocked and haven't accepted that my beautiful son has this nasty disease that has the potential to cripple him. We live in Austin, TX and his doctor is in Houston (almost a 4 hour drive), so I feel very much alone up here. I know people mean well, but I just don't feel like they can truly understand how I feel when their children aren't taking a handful of pills everyday and a chemo drug every week for something that may or may not get better. So, although I've upset myself once again, I would like to say 'THANK YOU' to this group and I'm so happy to have found all of you. Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Jerry, You are very fortunate to have found this group so quickly after diagnosis and I'm sure you'll feel better about your son's JRA sooner rather than later because of that. There are others in TX on this list. Go to the site on the page, look in the FILES database and you can find the list of members on this list. I know one of them has also made mention of trying to get people in various TX cities together to meet face to face. I know TX is a large state, but I'm sure I remember people being from Austin. Your comment about the crippling aspect of this disease.....In today's world and knowledge of treatment and new biologic response modifier drugs, chances that kids today will be crippled are slim. There are certainly hard cases to crack, and many of them are on this . But the majority of kids will ultimately find some level of comfort and normalcy, in time. The key is, time. It can take a while to find the right meds., right combination of meds, right doses, etc. to gain " medicated control " . After a while of that, without any setbacks, it is possible to wean off some drugs and maybe even all, for some kids. I'm not minimizing the disease by any means. It is a serious dragon to deal with. There are lots of truly trying times. But there are a lot of success stories out there as well. Education about JRA is one of your best friends, especially early on. Keep reading and posting here and you'll learn a ton. Welcome to a wonderful place to be, if you have to. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
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