Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Hi , I am glad that you found our group. We do have a few other adults on the list that also suffered with JRA and I really appreciate their insight. You mentioned that you had some joint replacements. I was wondering if you still have to take medication and if so what kind? Do you currently have any limitations or is it more residual problems left over from the joint damage caused during your teen years? And lastly I was wondering if you have noticed any long term side effects from any of the medications that you may have taken. Thanks for finding our group and feel free to jump in and share at any time! God Bless, (Aundrea 10 systemic jra) -- In , " " <brileetay@a...> wrote: > > Hello everyone. It has been many years since I have joined a group > and it was well before online groups were available. I am glad I > found this group and it does look like this is an excellent group of > people from the posts I have read. I am hoping to share my > experiences and to learn a little about others. > > I am now 35, but was first diagnosed with JRA when I was 12. I live > in ville, Indiana and went to Riley Hospital in Indianapolis > after I was first diagnosed. In the early years of my disease, the > current thought of the day was to give as little medication as > possible and work your way up to stronger meds as needed. Needless > to say I used to be in incredible pain and was in and out of the > hospital a lot. I have had both knees and hips replaced 14 years > ago. I have been through several surgeries and was the first known > case of nodules on my lungs. Feel free to ask me anything. > > I am now married to a wonderfull woman that takes acre of me and we > have 4 beautiful children. None of them have arthritis and I am > thankfull. > > I would love to hear from all of you and I hope to share more later. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi , I am taking Enbrel now and it is wonderful. I was taking Humera and it worked just as well, but the effects wore off after about 7 months and it was only effective for a day or two. Before that I had a 4 year relieve from any pain and medication. Now if I go off the Enbrel, I am barely able to walk. My hands and feet are deformed, but my wrists are locked in the upright position thanks to Dr. Passo and his recommendations for night splints. I can still grasp most anything and have sufficient strength. My elbows do not bend straight anymore, but they do not seem to be getting any worse and they are functional. As far as long term effects from medications, I have not really seen any. I have been on Methotrexate, Gold, Humira, Prednisone, Hydrocodone, Plaquinil, Trillisate, Arava, and probably some I don't remember, but none have had any long term effects. In a message dated 10/9/2005 10:04:55 A.M. Central Standard Time, sonia1md@... writes: Hi , I am glad that you found our group. We do have a few other adults on the list that also suffered with JRA and I really appreciate their insight. You mentioned that you had some joint replacements. I was wondering if you still have to take medication and if so what kind? Do you currently have any limitations or is it more residual problems left over from the joint damage caused during your teen years? And lastly I was wondering if you have noticed any long term side effects from any of the medications that you may have taken. Thanks for finding our group and feel free to jump in and share at any time! God Bless, (Aundrea 10 systemic jra) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Wow, and I thought I was the only one crazy enough to have 4 kids while battling RA. I would love to come to some of the events. Keep me posted. In a message dated 10/9/2005 11:01:43 A.M. Central Standard Time, ajaoky@... writes: Hi ! Welcome to the group, the best one on the net! My name is Donna and I live in Louisville, KY so we are practically neighbors. I have had JRA since age 4 and have had several surgeries myself. I am married and I have 2 sons, 3 step-daughters and a 5 month old grandson. I am chairperson for the American Juvenile Arthritis Organization of Kentuckiana ( including S. Indiana ). We would love to have you and your family join us at future events. If you would like more info please drop me a line. Hugs and smiles to all! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Thanks for sharing some of your story with us. I appreciate your candor and insight and am glad that you have found our group! Please always feel free to jump in and guide us parents as we make our way thru this journey of raising kids with jra as well as glean some support yourself from our adult members that have jra. God Bless, (aundrea 10 sjra)-- - In , brileetay@a... wrote: > > > Hi , > I am taking Enbrel now and it is wonderful. I was taking Humera and it > worked just as well, but the effects wore off after about 7 months and it was > only effective for a day or two. Before that I had a 4 year relieve from any > pain and medication. Now if I go off the Enbrel, I am barely able to walk. > > My hands and feet are deformed, but my wrists are locked in the upright > position thanks to Dr. Passo and his recommendations for night splints. I can > still grasp most anything and have sufficient strength. My elbows do not bend > straight anymore, but they do not seem to be getting any worse and they are > functional. > > As far as long term effects from medications, I have not really seen any. I > have been on Methotrexate, Gold, Humira, Prednisone, Hydrocodone, Plaquinil, > Trillisate, Arava, and probably some I don't remember, but none have had any > long term effects. > > > In a message dated 10/9/2005 10:04:55 A.M. Central Standard Time, > sonia1md@y... writes: > > Hi , > > I am glad that you found our group. We do have a few other adults > on the list that also suffered with JRA and I really appreciate > their insight. > > You mentioned that you had some joint replacements. I was wondering > if you still have to take medication and if so what kind? > > Do you currently have any limitations or is it more residual > problems left over from the joint damage caused during your teen > years? > > And lastly I was wondering if you have noticed any long term side > effects from any of the medications that you may have taken. > > Thanks for finding our group and feel free to jump in and share at > any time! > > God Bless, > (Aundrea 10 systemic jra) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Thank you Stacia. These days I feel wonderful and am pain free. I am glad most of it is behind me thanks to Enbrel. In a message dated 10/14/2005 9:41:22 A.M. Central Standard Time, staciar@... writes: Welcome ! There are other JRA veteran adults here who, like you, are quite the survivors including marriage and children. To my knowledge, none of them have kids with JRA, thankfully. There's only so much pain to go around maybe. I have a 9 year old son with systemic jra and uveitis since he was 3. He's under pretty good control with mtx. injections. I can't imagine the course of crude things you've been subjected to over the years and continue to pray that the medical field makes major advances with this disease quickly for everyone. I look forward to hearing more about your experiences and advice. Stacia and Hunter 9 systemic, uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Welcome ! There are other JRA veteran adults here who, like you, are quite the survivors including marriage and children. To my knowledge, none of them have kids with JRA, thankfully. There's only so much pain to go around maybe. I have a 9 year old son with systemic jra and uveitis since he was 3. He's under pretty good control with mtx. injections. I can't imagine the course of crude things you've been subjected to over the years and continue to pray that the medical field makes major advances with this disease quickly for everyone. I look forward to hearing more about your experiences and advice. Stacia and Hunter 9 systemic, uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 , Hello, glad to meet you! I have end-stage cirrhosis as well and have been on a transplant list for 10 years now. When I first got on the list they told me I'd need surgery in about 18 months, but I stabilized, and now have been through 3 treatments (33 out of 48 months of LIVING HELL) but still relapsed. However, it seems to have done my liver some good, and now I'm waiting for either Infergen or one of the protease inhibitors to fix me. I am really tired most of the time, have low-grade nausea most of the time, with various aches and pains. My WBC is low, albumin is low, platelets are normal now but were in the 70-80,000 for 7 years before they went up. I have a huge portal bein (looks like Lake Erie on a scan), an enlarged spleen, and varices all the way up to my heart. I saw the CT scan and said - what are those pretty round things that look like baloons? never guessing how well I described the varices. So how are you, are you on a list (if not why), what kind of doc are you seeing? I go to Stanford and see one of their transplant MD's, Dr. Imperial. Transplant MD's are by far the best to take care of us, since they have more experience with end-stage disease than regular GI or hepatologists. How are you feeling? Do you have family support? I live with my sister, I'm on federal disability which is so little she pretty much supports me too. I have 3 cats who are my joy, one's 22, one's 15 and one is 6. Where do you live? Again, nice to meet you and I look forward to talking more to you! Michele --- darker_goddess <darker_goddess@...> wrote: > Hi I just joined this site and wanted to pop in to > say hey. My name is > stephanie, I am 20 I was dxed with HepC when I was > sixteen. I am end > stage chirrossis and end stage of the disease it > self. I am hoping to > make some friends who understand what having hep is > like. > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Hi Michele, It was so nice to hear from you! I was on the Peg intron with Rebeverion but it didnt take. My viral load is the highest there is. My liver levels are high but not to elevated to worry to much. My Amonia level keeps going up so im on Latalose. I have tumors on my liver as well. I am not on the list yet, I go next week to boston to see my doctor, Doctor Goldberg, he is a specialist in hep C. He is head of the department, my mum calls him Doogy Houser cause he looks so young! But I got to boston and have to stay in the hospital for 4 or more days to see if I am eligable for a transplant. I may not be because I have a very high viral load, and I have a heart problem that they are still looking into. I have two cats, not sure how old they are. And my dogs are Jezzie, Dakota, Lady, Buddy, Drusilla, and our newest addition Roxie. I live in Maine, in Aroostook county, and we have no hep docs up here so I have to travel all the way to boston. When I go next week, we will see if the tumors have turned cancerous. I have almost the exact same symptoms as you, but my nausea is real bad I can hardly hold anything down. --- Michele Kiger <mishkiger@...> wrote: > , > > Hello, glad to meet you! I have end-stage cirrhosis > as > well and have been on a transplant list for 10 years > now. When I first got on the list they told me I'd > need surgery in about 18 months, but I stabilized, > and > now have been through 3 treatments (33 out of 48 > months of LIVING HELL) but still relapsed. However, > it > seems to have done my liver some good, and now I'm > waiting for either Infergen or one of the protease > inhibitors to fix me. > > I am really tired most of the time, have low-grade > nausea most of the time, with various aches and > pains. > My WBC is low, albumin is low, platelets are normal > now but were in the 70-80,000 for 7 years before > they > went up. I have a huge portal bein (looks like Lake > Erie on a scan), an enlarged spleen, and varices all > the way up to my heart. I saw the CT scan and said - > what are those pretty round things that look like > baloons? never guessing how well I described the > varices. > > So how are you, are you on a list (if not why), what > kind of doc are you seeing? I go to Stanford and see > one of their transplant MD's, Dr. Imperial. > Transplant > MD's are by far the best to take care of us, since > they have more experience with end-stage disease > than > regular GI or hepatologists. > > How are you feeling? Do you have family support? I > live with my sister, I'm on federal disability which > is so little she pretty much supports me too. I have > 3 > cats who are my joy, one's 22, one's 15 and one is > 6. > > Where do you live? Again, nice to meet you and I > look > forward to talking more to you! > > Michele > > --- darker_goddess <darker_goddess@...> wrote: > > > Hi I just joined this site and wanted to pop in to > > say hey. My name is > > stephanie, I am 20 I was dxed with HepC when I was > > sixteen. I am end > > stage chirrossis and end stage of the disease it > > self. I am hoping to > > make some friends who understand what having hep > is > > like. > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 HEY SMOKIE, SORRY THAT I CAN'T HELP YOU. ALL I CAN DO IS TO WISH YOU A QUICK RESOLUTION TO YOUR PROBLEM. HOPE THAT YOU WILL HAVE A BETTER DAY TODAY THAN YESTERDAY. TAKE AS BEST CARE AS YOU CAN AND BE SAFE. LARRY, IN COWTOWN <smokie1952@...> wrote: Has anyone experienced dizzy spells after neck surgery ? I am 10months post op and started having dizzy spells . REMEMBER ALL OF OUR MEN AND WOMEN IN THE ARMED SERVICE OF OUR NATION PRAY THAT THEY MAY BE SAFE AND SOUND IN BODY AND MIND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 , I would contact your doctor about the dizzy spells. I have had two surgeries on my neck but I never had dizzy spells. This sounds like something else it going on with you. So it is best to contact your doctor. Hugs and Prayers, Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 I have an appt next week Babs <barbnal@...> wrote: , I would contact your doctor about the dizzy spells. I have had two surgeries on my neck but I never had dizzy spells. This sounds like something else it going on with you. So it is best to contact your doctor. Hugs and Prayers, Babs Personals Skip the bars and set-ups and start using Personals for free Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 Thank you Dani, I like how you change your name each time. That is very cool and festive. I hope you are having low pain days. :-) Take care, Katrina > > It's been a long time since I've posted here. I just want to welcome > all new members, and wish everyone a less painful day. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Hi Dani, I am having less pain this weekend which is so great. Went to the movies last night and was ok during it. After i was a little sore but too bad. I am grateful for these good days. I hope you have a great day. Liisa > > Just wanted to say I hope you are enjoying your weekend and having > less painful days....... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Thanks!! I'm glad you're doing ok. > > > > Just wanted to say I hope you are enjoying your weekend and having > > less painful days....... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Well I don't want to rain on the parade, but for some reason I'm having a bout of the worst pain in months. If tonight goes like last night I'm going to the ER for Morphine. SSI says they need more medical info to back up my claim, so why lay all night writhing in pain. I about went out of my mind last night. Can't say what the trigger is, other than a big low pressure system came through. hope you're al doing better. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Hi Dave I go to PT 3-5 times a week, I now have arthritis in my shoulder and neck, as well as my knees and back, and believe it or not, last week in Vegas we had a cold spell. I went to PT, and my therapist was manipulating my knee, and I almost came off the table, the pain was so bad. He said when he was a young therapist he didn't believe the weather had anything to do with our bone and joint pain, but now that he's an old therapist, he's a believer in it. I hope your weather has changed and your pain is better. My pain dr. is making me have an EKG, I asked why and he said that when you're on heavy duty drugs, they require it once a year. Have you ever heard of that?Just one more thing to worry about- Hope you're better, how is your claim going? JeannieJeannie New Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Dave I hope your pain has eased up. I hope you get what you need to get your ssi. It is a battle to get it approved a battle I know all to well. But every state is different. I am still waiting on my Judges decision. But no biggie I have waited 3 years come May. Each state deals with it differently. I am in Alabama but my appeal when to Atlanta Ga since I live on the state line. A friend of mine in Wiscosin had her judge tell her she was approved at her hearing. Go figure. I am happy that she did not have to wait. Hugs and Prayers, Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Jeannie, I have never heard of it. But as with anything different states require different things. As I told Dave. Hugs and Prayers, Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Sorry to hear you were in so much pain Dave. I hope it has eased up. > > Well I don't want to rain on the parade, but for some reason I'm having a > bout of the worst pain in months. If tonight goes like last night I'm > going to the ER for Morphine. SSI says they need more medical info to back > up my claim, so why lay all night writhing in pain. I about went out of my > mind last night. Can't say what the trigger is, other than a big low > pressure system came through. hope you're al doing better. Dave > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 At 02:31 AM 4/10/06, you wrote: >Hi Dave Thanks for all of your concern and wishes. I really thought I was going to have a second night of it. But I got lots of massage before bed, 2 Ice packs, and one extra pain killer, and I slept thru the night. It may also be it is sunny and beautiful here today too. As for Heart related things, my family has a history of heart problems, and I had a scare the other night not sure if it was Gas or something more but I'm going to schedule a stress test to rule anything out. As for SSI I have one year to wait just for the hearing, so I try to push that to the back of my mind. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Thank you! I hope you have a great and less painful weekend too. :-) Take care, Katrina > > Just wanted to say I hope you are enjoying your weekend and having > less painful days....... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 i think you should go and get that - - - - documented dave. i hate going to the er, i think i do it do much, but i just can't , well, there is a lot of things i forget to do or i make appt with new docs and miss them, i dont know why; something always comes up. a reason, problem, or an excuse. anyways i hope this goes away for you along with the pressure system. take it easy rob i No greater burden can be borne by an individual than to know no one cares or understands. >> > > > > Well I don't want to rain on the parade, but for some reason I'm >having a > > bout of the worst pain in months. If tonight goes like last night >I'm > > going to the ER for Morphine. SSI says they need more medical info >to back > > up my claim, so why lay all night writhing in pain. I about went >out of my > > mind last night. Can't say what the trigger is, other than a big >low > > pressure system came through. hope you're al doing better. Dave > > > > > > > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 see, i wished it would go away and it did! im magic, or very late with all my posts, hmmm No greater burden can be borne by an individual than to know no one cares or understands. >From: Cruikshank <d.cruikshank@...> >Reply-neck pain >neck pain >Subject: Re: Hello >Date: Mon, 10 Apr 2006 12:11:59 -0400 > >At 02:31 AM 4/10/06, you wrote: > >Hi Dave > >Thanks for all of your concern and wishes. I really thought I was going to >have a second night of it. But I got lots of massage before bed, 2 Ice >packs, and one extra pain killer, and I slept thru the night. It may also >be it is sunny and beautiful here today too. > > As for Heart related things, my family has a history of heart >problems, and I had a scare the other night not sure if it was Gas or >something more but I'm going to schedule a stress test to rule anything >out. > > As for SSI I have one year to wait just for the hearing, so I try >to push that to the back of my mind. Dave > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 welcome , Glad you found this group - even though it's sad to have a reason. I am . I am 36 and had JRA since I was 3 - so I am one of the veteran's in this group. This group is awesome! It is full of many knowlegeable and very caring people. Ask any questions - someone probably knows the answer or can tell you where to look. As I said I have had this wonderful (can explain this if you need me to) and awful disease since I was 3 - so if I can be of ANY help let me know. I am married (17 yrs) to Greg and have a HEALTHY 5.5 yr old daughter, Destiny. We live in Alabama. Looking forard to getting to know you better. love, prayers, and blessings (age 36 - dx poly @ age 3) If God leads you to it...He will lead you through it wife to Greg 17 years Mommy to Destiny age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi , How old is your Son? What grade is he in? JRA is Struggles but these kid's are troopers to. Here you have a range of ages who have JRA. You have the Veterans to JRA and then you have children 1 yr and up. You can just type away and vent how your feeling. You can chime in and tell what you know. You ask a question and I bet someone on here will answer you or tell you what to do about it. Glad you found this site. We just had the AJAO Conference here in Atlanta Ga. So there's pictures on the site to look at. The Next AJAO Conference is in Hershey, Pa July 1 - 4th.2007. Have you called your local AF office yet? Robbin Quote Link to comment Share on other sites More sharing options...
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