Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 I'm on Enbrel, MTX, plaquenil & Prednisone. I'm actually doing very well, I think, with the exception of being tired often & getting irritating little colds every other week. Otherwise I don't have much pain, more like dull aches about half the time. I've had no surgeries though. Seems to me, that would make it tougher. > > Hi, > > I was was just diagnosed last week. the doctor spent all of 5 minutes with me. I thought the > course of this disease was variable but now I have read that it is progressive. Is anyone here > doing well or know of anyone doing well with RA? I don't know how much more I can stand. > I just replaced two hips, five weeks apart and have had RA pain ever since. I was a nurse and > have seen suffering. I'm not into life at any cost. Reading these posts really has me worried. > > One more question. Does the RF level reflect disease activity? Mine is just a few points above > normal but supposedly this is what I have. > > Thanks for the input on minocycline, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 I am doing very well on Enbrel, one of the biologic DMARD's. The meds today are much better than they used to be. RA needs to be attacked aggressively from the beginning to prevent joint damage. My rheumy uses the C-reactive protein blood test to monitor my RA. It shows the level of inflammation in your body. Good luck! All is not lost. Sue On Tuesday, January 29, 2008, at 09:33 PM, savannahhipchick wrote: > Hi, > > I was was just diagnosed last week. the doctor spent all of 5 minutes > with me. I thought the > course of this disease was variable but now I have read that it is > progressive. Is anyone here > doing well or know of anyone doing well with RA? I don't know how > much more I can stand. > I just replaced two hips, five weeks apart and have had RA pain ever > since. I was a nurse and > have seen suffering. I'm not into life at any cost. Reading these > posts really has me worried. > > One more question. Does the RF level reflect disease activity? Mine > is just a few points above > normal but supposedly this is what I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi , I am sorry to hear you are depressed but understand why. But I hope I am not scaring you with my posts. i try not to post unless I am having a good day. This is just a vry bad time for me right now. However, I have a really bad resistant case. I also have a high lupus count no lupus but high count I have been told. I was also told RF was the important number to watch and not the sed rate but my sed rate has been consistantly high for a year now sometimes as high as 140 so it is the one I look at although my RF factor is usually high as well. If it makes you feel any better I have never met anyone who has RA as severely as I do. I don't think the doctors have seen a case like mine either, not many. I meet a lot of RA folks at the visits and in the transfusion rooms. They all still have their joints and mobility and some of them got this disease when they were children. Only one guy I met had a bad case of psoriatic arthritis. He was in severe pain. and walked a lot like me, bent over, limping. Progressive doesn't mean it can't be slowed and maybe even go into remission. However, i too have the have the hips replaced. I would like to know how you come along with that. Are you in physical therapy. I didn't go to therapy for a long time. I was focused on the care of my daughter for many years. I think therapy can help a lot with staying flexible. I went to therapy about 3 years ago but had to stop it. I am now looking for therapy again just to learn how to manage with the limitations and hopefully prepare for hip surgery. But hang in there. Stay hopeful. It can get better in spurts and hopefully long spurts. blessings, Ebony > > Hi, > > I was was just diagnosed last week. the doctor spent all of 5 minutes with me. I thought the > course of this disease was variable but now I have read that it is progressive. Is anyone here > doing well or know of anyone doing well with RA? I don't know how much more I can stand. > I just replaced two hips, five weeks apart and have had RA pain ever since. I was a nurse and > have seen suffering. I'm not into life at any cost. Reading these posts really has me worried. > > One more question. Does the RF level reflect disease activity? Mine is just a few points above > normal but supposedly this is what I have. > > Thanks for the input on minocycline, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hi Jeannette, I 'm sorrry you are depressed. It is so understandable. Hang in there. What does not kil us will makes us stronger. So they say. Who Is thay? I don't know/ All I have to ontribute is I like being o minicycline. I feel netter on it but my Dr. does not let me stay on it to long. I mmay have to go to Mexixo and get a RX. there being Hispanic aand all. I also was on enbrel and pred.. which an cause depression and diadetes my Dr. said so shewats me off the prednisone and on metro. which I just can't bring myself to take. I'm going to look into somme holistic products. I wish you the best if luck. You are in my prayers along with the entire group. Blessings to all. witjhh llove, Marie --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 First of all, you need a doctor who will spend more than 5 minutes with you. Was this a primary care doctor or a rheumatologist? Ask for references for a rheumatologist who is compassionate -- maybe some of your nursing colleagues can give you a recommendation. You need someone who will spend time examining your clinical presentation, as well as explain your test results. RA diagnosis comes from multiple factors. Also -- my rheumatologist told me that in this day and age, no one should end up severely dysfunctional from RA. There are many treatments to explore and more developed all the time. I have had RA for a year and I am doing very well. I am on minocin and plaquenil. In my daily living you would not know anything is wrong with me, although I do tire more easily than I used to. I still work and I still exercise -- although not the same way. Do some more research -- you can still live a great life. Email me if you have questions. Bonnie > > Hi, > > I was was just diagnosed last week. the doctor spent all of 5 minutes with me. I thought the > course of this disease was variable but now I have read that it is progressive. Is anyone here > doing well or know of anyone doing well with RA? I don't know how much more I can stand. > I just replaced two hips, five weeks apart and have had RA pain ever since. I was a nurse and > have seen suffering. I'm not into life at any cost. Reading these posts really has me worried. > > One more question. Does the RF level reflect disease activity? Mine is just a few points above > normal but supposedly this is what I have. > > Thanks for the input on minocycline, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Hi Ebony, I'm really sorry to hear about your struggle. I have one bit of good news for you. Hip replacement is fantastic and nothing to be afraid of. I was on an arthritis support board about 4 years ago when a total stranger sent me a message to leave that place because I was too young and to check out surfacehippy in . Please go to surfacehippy and see the fantastic European surgery which is now available here in the US and thanks to a group of doctors totally dedicated to the young arthritic patient. My ortho thinks my newly resurfaced hips might last 40 years. That is unheard of with the conventional hips that 99% of surgeons are placing these days. Don't wait Ebony. I lost 4 years of my life and gained 40 pounds sitting on the couch. This surgery is great and I left the hospital in 24 hours with a 4 inch incision. I went back 5 weeks later and had another hip done. I drove myself home 2 days later. I was crippled too, very crippled. At least one part of me doesn't hurt now:) Wishing you some relief, > > > > Hi, > > > > I was was just diagnosed last week. the doctor spent all of 5 > minutes with me. I thought the > > course of this disease was variable but now I have read that it is > progressive. Is anyone here > > doing well or know of anyone doing well with RA? I don't know how > much more I can stand. > > I just replaced two hips, five weeks apart and have had RA pain > ever since. I was a nurse and > > have seen suffering. I'm not into life at any cost. Reading > these posts really has me worried. > > > > One more question. Does the RF level reflect disease activity? > Mine is just a few points above > > normal but supposedly this is what I have. > > > > Thanks for the input on minocycline, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Bonnie, This was one of the most famous rheumatologists in the USA. He helped develop Synvisc. I could not believe it either. He did not even know I was a nurse in the past. Just told me to come back in 4 months. I'm shocked because I had traveled over one thousand miles to see him and he was aware of that. I am willing to travel but it is hard because I live in a small, hard to reach city and I have to find care for my two children which is really difficult. My husband was not too happy either. The last two times I saw him, he was very dismissive. My RF factor is the same as several years ago so why RA now? We don't have unlimited resources for visits to major medical centers. I recently flew across the country to UCLA for a second opinion regarding a diagnosis of MS. Fortunately it was worth it because the neuro there said I don't have MS in spite of a spots on my brain. It's just been a real nightmare. I don't know who to believe. > > > > Hi, > > > > I was was just diagnosed last week. the doctor spent all of 5 > minutes with me. I thought the > > course of this disease was variable but now I have read that it is > progressive. Is anyone here > > doing well or know of anyone doing well with RA? I don't know how > much more I can stand. > > I just replaced two hips, five weeks apart and have had RA pain > ever since. I was a nurse and > > have seen suffering. I'm not into life at any cost. Reading > these posts really has me worried. > > > > One more question. Does the RF level reflect disease activity? > Mine is just a few points above > > normal but supposedly this is what I have. > > > > Thanks for the input on minocycline, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Dear Really depressed, Wow! What you went through would make anyone depressed. I am sorry you had such a negative experience. Not to make light of it in any way....let me tell you I have heard some horror stories and it is so unfair and down right ugly and wrong. I wish you the best in what you are going to do next. I pray for wisdom and guidance for you as this is not easy, I know. When I was in the hospital for two weeks for suicide, I was seen by th r/a team daily and they were wonderful. It was at the hospital " University of Penn " at 3400 Spruce st. They are now my r/a Dr's. and I am very happy with them except that I do not want to start the metro.I will tell them on my next visit that I didn't take it or maybe I will do more research on it and end up taking it. They fixed my knees annd so walking was easier. No more cane or walker. I wish you the best and pray that you will find good care,Dr's you will be happy with and that will bevery good for you in everyway. Hang in there. You are worth it. Sincerly & with all my love, Marie > > > > > > Hi, > > > > > > I was was just diagnosed last week. the doctor spent all of 5 > > minutes with me. I thought the > > > course of this disease was variable but now I have read that it is > > progressive. Is anyone here > > > doing well or know of anyone doing well with RA? I don't know how > > much more I can stand. > > > I just replaced two hips, five weeks apart and have had RA pain > > ever since. I was a nurse and > > > have seen suffering. I'm not into life at any cost. Reading > > these posts really has me worried. > > > > > > One more question. Does the RF level reflect disease activity? > > Mine is just a few points above > > > normal but supposedly this is what I have. > > > > > > Thanks for the input on minocycline, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Hi Marie, I'm so sorry you were in so much pain that you contemplated suicide. What is with doctors in the US? There are people who need narcotics. I just don't think your pain should have reached that level. I get relief from Vicodin if things are really bad but mostly Celebrex has me covered. I'm so happy you found a good medical team and people you can trust. On the upside, I know a man who has been on mtx for 13 years with no bad side effects. He has an occasional pain in his shoulder and knee at times. Basically you'd never know by seeing him that he has RA. I'm afraid of mtx because my new hips might get infected and my kidneys are stressed already and I have genetic balding. One week of mtx and I'll be bald. I've been struggling with the hair loss for six years now. I live in the South and my kids like to be outside so the idea of a wig does not excite me. All the best Marie and keep us posted. -- In , " snowespi " <snowespi@...> wrote: > > > Dear Really depressed, Wow! What you went through would make anyone > depressed. I am sorry you had such a negative experience. Not to make > light of it in any way....let me tell you I have heard some horror > stories and it is so unfair and down right ugly and wrong. I wish you > the best in what you are going to do next. I pray for wisdom and > guidance for you as this is not easy, I know. When I was in the > hospital for two weeks for suicide, I was seen by th r/a team daily > and they were wonderful. It was at the hospital " University of Penn " > at 3400 Spruce st. They are now my r/a Dr's. and I am very happy with > them except that I do not want to start the metro.I will tell them on > my next visit that I didn't take it or maybe I will do more research > on it and end up taking it. They fixed my knees annd so walking was > easier. No more cane or walker. I wish you the best and pray that you > will find good care,Dr's you will be happy with and that will bevery > good for you in everyway. Hang in there. You are worth it. > Sincerly & with all my love, Marie > > > > > > > > > > > > > > > Hi, > > > > > > > > I was was just diagnosed last week. the doctor spent all of 5 > > > minutes with me. I thought the > > > > course of this disease was variable but now I have read that it > is > > > progressive. Is anyone here > > > > doing well or know of anyone doing well with RA? I don't know > how > > > much more I can stand. > > > > I just replaced two hips, five weeks apart and have had RA pain > > > ever since. I was a nurse and > > > > have seen suffering. I'm not into life at any cost. Reading > > > these posts really has me worried. > > > > > > > > One more question. Does the RF level reflect disease > activity? > > > Mine is just a few points above > > > > normal but supposedly this is what I have. > > > > > > > > Thanks for the input on minocycline, > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 > She spends at > least 45 minutes with me each time I see her -- she checks every > joint -- hands, feet, knees, shoulders, elbows, hips, -- has me move > my neck and jaw, looks at my spine, etc.>>>>> > My rheumie has never checked any of my joints! I have a feeling she is a " hands off " doctor! Maybe it is something you could explain to all of us so we could check our own? What does she do? Just have you move it and ask if it hurts, or what? Could you give us a few examples? Thanks, she sounds great, Pris ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Hi ! I have been reading your posts and am wondering where you are in the US. ©x© Kami ©x© [ ] Re: really depressed Hi Marie, I'm so sorry you were in so much pain that you contemplated suicide. What is with doctors in the US? There are people who need narcotics. I just don't think your pain should have reached that level. I get relief from Vicodin if things are really bad but mostly Celebrex has me covered. I'm so happy you found a good medical team and people you can trust. On the upside, I know a man who has been on mtx for 13 years with no bad side effects. He has an occasional pain in his shoulder and knee at times. Basically you'd never know by seeing him that he has RA. I'm afraid of mtx because my new hips might get infected and my kidneys are stressed already and I have genetic balding. One week of mtx and I'll be bald. I've been struggling with the hair loss for six years now. I live in the South and my kids like to be outside so the idea of a wig does not excite me. All the best Marie and keep us posted. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 , where in the south do you live? What airport do you go to? You should not have to be flying across the country to find good care -- or come here to Chicago and see my doctor. I love her. She spends at least 45 minutes with me each time I see her -- she checks every joint -- hands, feet, knees, shoulders, elbows, hips, -- has me move my neck and jaw, looks at my spine, etc. My husband goes to these appointments because he has so many questions and I never learn enough to satisfy him (he's also a physician). I saw her this morning and got a good report -- not remission, but definitely control. The fluid on my knees has really diminished. I have stopped taking the anti inflammatories/pain meds and I can manage well. It's not like before RA (fatigue is still pretty strong) but I could easily live like this the rest of my life (if I am so lucky ...). Email me if you want to 'talk'. Bonnie > > > > > > Hi, > > > > > > I was was just diagnosed last week. the doctor spent all of 5 > > minutes with me. I thought the > > > course of this disease was variable but now I have read that it is > > progressive. Is anyone here > > > doing well or know of anyone doing well with RA? I don't know how > > much more I can stand. > > > I just replaced two hips, five weeks apart and have had RA pain > > ever since. I was a nurse and > > > have seen suffering. I'm not into life at any cost. Reading > > these posts really has me worried. > > > > > > One more question. Does the RF level reflect disease activity? > > Mine is just a few points above > > > normal but supposedly this is what I have. > > > > > > Thanks for the input on minocycline, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Hi Kami, I live in Savannah. A great city to visit but lacking doctors. Where do you live? > > Hi ! > > I have been reading your posts and am wondering where you are in the US. > > > ©x© Kami ©x© > > [ ] Re: really depressed > > > Hi Marie, > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > doctors in the US? There are people who need narcotics. I just don't think your pain > should have reached that level. I get relief from Vicodin if things are really bad but mostly > Celebrex has me covered. I'm so happy you found a good medical team and people you > can trust. > > On the upside, I know a man who has been on mtx for 13 years with no bad side effects. > He has an occasional pain in his shoulder and knee at times. Basically you'd never know > by seeing him that he has RA. I'm afraid of mtx because my new hips might get infected > and my kidneys are stressed already and I have genetic balding. One week of mtx and I'll > be bald. I've been struggling with the hair loss for six years now. I live in the South and > my kids like to be outside so the idea of a wig does not excite me. > > All the best Marie and keep us posted. > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 I live in Pennsylvania where it is fffffffreezing! I am all too familiar with not having adequate care. There are no rheumatologists in my county and I had been traveling 30 miles to see one but after the scleritis/RA thing, I decided to get a second opinion/clarification of diagnosis. I traveled nearly 2 hours to meet this doctor. Let me tell you.... I have never had such a thorough exam in my life. To me, it was worth the 2 hour drive and two hours spent in the office. Yes, HOURS. The first hour or so was with the nurse practitioner and then 45 mins or so with the doctor. I am confident that this is the office where I need to continue my care. Question: Is there a particular reason that you are traveling so far to see these particular doctors? We havent taken a family vacation in two years because traveling EXHAUSTS me. I can't imagine traveling around the country and then having a doctor dismiss me after 5 mins. I would be PISSED!!!! What about university hospitals? teaching hospitals? ©x© Kami ©x© [ ] Re: really depressed > > > Hi Marie, > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > doctors in the US? There are people who need narcotics. I just don't think your pain > should have reached that level. I get relief from Vicodin if things are really bad but mostly > Celebrex has me covered. I'm so happy you found a good medical team and people you > can trust. > > On the upside, I know a man who has been on mtx for 13 years with no bad side effects. > He has an occasional pain in his shoulder and knee at times. Basically you'd never know > by seeing him that he has RA. I'm afraid of mtx because my new hips might get infected > and my kidneys are stressed already and I have genetic balding. One week of mtx and I'll > be bald. I've been struggling with the hair loss for six years now. I live in the South and > my kids like to be outside so the idea of a wig does not excite me. > > All the best Marie and keep us posted. > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Hi Pris -- I don't know how to explain it exactly. She has me make fists -- open and close my hands. She feels each joint in each finger -- looking for swelling, warmth or tenderness. She is checking flexibility and mobility. My neck is kind of stiff for example -- so she asks if I am doing my exercises and then she sees if I am better or worse or the same as my last visit. She has me lie on my back and raises my legs, bends my knees, feels the knees to see if they are still swollen (they were a big problem for awhile), and so on. She checks the tendonitis I have had in my wrists. She is looking to see if I still clinically present RA. I don't really have many visible signs anymore, except some of the limited range of motion in my neck and my shoulders. She won't check my labs again for several months -- but she spends a lot of time in the physical exam every time I go. She's a great doctor. She really cares about my progress, pain and discomfort. I can tell I am lucky -- you hear a lot of different stories on these boards. I don't know how a doctor can evaluate and diagnose you properly without really examining your body -- this disease is not based solely on lab work but also on clinical presentation. You might want to check out someone else if you have any other options. I hope that helps. Bonnie > > She spends at > > least 45 minutes with me each time I see her -- she checks every > > joint -- hands, feet, knees, shoulders, elbows, hips, -- has me move > > my neck and jaw, looks at my spine, etc.>>>>> > > > My rheumie has never checked any of my joints! I have a feeling she is a > " hands off " doctor! Maybe it is something you could explain to all of us so we > could check our own? > What does she do? > Just have you move it and ask if it hurts, or what? > Could you give us a few examples? > Thanks, she sounds great, > Pris > > > > > > > > > > ************** > Start the year off right. Easy ways to stay in shape. > > http://body.aol.com/fitness/winter-exercise? NCID=aolcmp00300000002489 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 Hi - I was reading your post and saw that you live in Savannah - I live in Flroence, SC and have an appointment with Holly next week at the Medical University of SC in ton. Have you been to MUSC yet? I had a wonderful rheumy here but after treating me for 2 1/2 years, he decided to refer me to a specialist at the University. My choice was MUSC or Duke. For me, Duke is the best but too far away. I heard great things about MUSC so I opted for the shortest drive, 1 hr 45 min. D. savannahhipchick <lfriedman5@...> wrote: Hi Kami, I live in Savannah. A great city to visit but lacking doctors. Where do you live? > > Hi ! > > I have been reading your posts and am wondering where you are in the US. > > > ©x© Kami ©x© > > [ ] Re: really depressed > > > Hi Marie, > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > doctors in the US? There are people who need narcotics. I just don't think your pain > should have reached that level. I get relief from Vicodin if things are really bad but mostly > Celebrex has me covered. I'm so happy you found a good medical team and people you > can trust. > > On the upside, I know a man who has been on mtx for 13 years with no bad side effects. > He has an occasional pain in his shoulder and knee at times. Basically you'd never know > by seeing him that he has RA. I'm afraid of mtx because my new hips might get infected > and my kidneys are stressed already and I have genetic balding. One week of mtx and I'll > be bald. I've been struggling with the hair loss for six years now. I live in the South and > my kids like to be outside so the idea of a wig does not excite me. > > All the best Marie and keep us posted. > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 Hi D.! We're almost neighbors. I did in fact go to MUSC about four years ago. I saw Edwin . He did take time with me but absolutely felt I had no rheumatic disease. When I saw him I had a positive ANA history, positive history of mildly elevated RF. My hips were bone on bone and I had livedo and the start of raynauds. I don't know...I thought about going back but I get the feeling they are really into Scleroderma only. Nobody has an explanation about my hips. Nobody. I was bone on bone at 41. I am a strange case. Let me know how it goes for you. > > > > Hi ! > > > > I have been reading your posts and am wondering where you are in the US. > > > > > > ©x© Kami ©x© > > > > [ ] Re: really depressed > > > > > > Hi Marie, > > > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > > doctors in the US? There are people who need narcotics. I just don't think your pain > > should have reached that level. I get relief from Vicodin if things are really bad but > mostly > > Celebrex has me covered. I'm so happy you found a good medical team and people > you > > can trust. > > > > On the upside, I know a man who has been on mtx for 13 years with no bad side > effects. > > He has an occasional pain in his shoulder and knee at times. Basically you'd never > know > > by seeing him that he has RA. I'm afraid of mtx because my new hips might get > infected > > and my kidneys are stressed already and I have genetic balding. One week of mtx and > I'll > > be bald. I've been struggling with the hair loss for six years now. I live in the South and > > my kids like to be outside so the idea of a wig does not excite me. > > > > All the best Marie and keep us posted. > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 Well, I am kind of nervous about going because you just never know if you will hit it off with the doctor. I hope it goes well. I loved my doctor here - I was seeing J. Harrell Docherty, Jr. He was one of the best doctors I think I have ever seen. Have you seen an orthopedic doctor about your hips? D. savannahhipchick <lfriedman5@...> wrote: Hi D.! We're almost neighbors. I did in fact go to MUSC about four years ago. I saw Edwin . He did take time with me but absolutely felt I had no rheumatic disease. When I saw him I had a positive ANA history, positive history of mildly elevated RF. My hips were bone on bone and I had livedo and the start of raynauds. I don't know...I thought about going back but I get the feeling they are really into Scleroderma only. Nobody has an explanation about my hips. Nobody. I was bone on bone at 41. I am a strange case. Let me know how it goes for you. > > > > Hi ! > > > > I have been reading your posts and am wondering where you are in the US. > > > > > > ©x© Kami ©x© > > > > [ ] Re: really depressed > > > > > > Hi Marie, > > > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > > doctors in the US? There are people who need narcotics. I just don't think your pain > > should have reached that level. I get relief from Vicodin if things are really bad but > mostly > > Celebrex has me covered. I'm so happy you found a good medical team and people > you > > can trust. > > > > On the upside, I know a man who has been on mtx for 13 years with no bad side > effects. > > He has an occasional pain in his shoulder and knee at times. Basically you'd never > know > > by seeing him that he has RA. I'm afraid of mtx because my new hips might get > infected > > and my kidneys are stressed already and I have genetic balding. One week of mtx and > I'll > > be bald. I've been struggling with the hair loss for six years now. I live in the South and > > my kids like to be outside so the idea of a wig does not excite me. > > > > All the best Marie and keep us posted. > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 Oh Kami, I am PISSED and HEARTBROKEN. I went to this same guy 3.5 years ago and he blew me off. I showed him 3.5years ago that my elbows were were developing contractures and my index finger was bending etc... All he said was lose weight! This time, I did not disrobe. I was with a resident who knew zero about rheumatology and the doctor flew in and out. I tried to ask about splints but all he said was one thing at a time. Meds first. This is a very major medical center. Now I'm crying all day. On and off. My kids are really the ones to feel bad for, they have cripple mom. Thay've had cripple mom their whole life but I thought after hip surgeries I'd be much better. The hips are great but I can hardly stand on my feet. This doctor did not even explain anything about RA! Hence my presence here. Thanks, > > > > Hi ! > > > > I have been reading your posts and am wondering where you are in the US. > > > > > > ©x© Kami ©x© > > > > [ ] Re: really depressed > > > > > > Hi Marie, > > > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > > doctors in the US? There are people who need narcotics. I just don't think your pain > > should have reached that level. I get relief from Vicodin if things are really bad but > mostly > > Celebrex has me covered. I'm so happy you found a good medical team and people > you > > can trust. > > > > On the upside, I know a man who has been on mtx for 13 years with no bad side > effects. > > He has an occasional pain in his shoulder and knee at times. Basically you'd never > know > > by seeing him that he has RA. I'm afraid of mtx because my new hips might get > infected > > and my kidneys are stressed already and I have genetic balding. One week of mtx and > I'll > > be bald. I've been struggling with the hair loss for six years now. I live in the South and > > my kids like to be outside so the idea of a wig does not excite me. > > > > All the best Marie and keep us posted. > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 > > > > I live in Pennsylvania where it is fffffffreezing! > > > > I am all too familiar with not having adequate care. There are no rheumatologists in my > county and I had been traveling 30 miles to see one but after the scleritis/RA thing, I > decided to get a second opinion/clarification of diagnosis. I traveled nearly 2 hours to > meet this doctor. Let me tell you.... I have never had such a thorough exam in my life. To > me, it was worth the 2 hour drive and two hours spent in the office. Yes, HOURS. The first > hour or so was with the nurse practitioner and then 45 mins or so with the doctor. I am > confident that this is the office where I need to continue my care. > > > > Question: Is there a particular reason that you are traveling so far to see these particular > doctors? We havent taken a family vacation in two years because traveling EXHAUSTS me. I > can't imagine traveling around the country and then having a doctor dismiss me after 5 > mins. I would be PISSED!!!! What about university hospitals? teaching hospitals? > > > > ©x© Kami ©x© > > > > [ ] Re: really depressed > > > > > > > > > Hi Marie, > > > > > > I'm so sorry you were in so much pain that you contemplated suicide. What is with > > > doctors in the US? There are people who need narcotics. I just don't think your pain > > > should have reached that level. I get relief from Vicodin if things are really bad but > > mostly > > > Celebrex has me covered. I'm so happy you found a good medical team and people > > you > > > can trust. > > > > > > On the upside, I know a man who has been on mtx for 13 years with no bad side > > effects. > > > He has an occasional pain in his shoulder and knee at times. Basically you'd never > > know > > > by seeing him that he has RA. I'm afraid of mtx because my new hips might get > > infected > > > and my kidneys are stressed already and I have genetic balding. One week of mtx > and > > I'll > > > be bald. I've been struggling with the hair loss for six years now. I live in the South > and > > > my kids like to be outside so the idea of a wig does not excite me. > > > > > > All the best Marie and keep us posted. > > > . > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 *chimes in* Mine checks my joints each visit as well. Sounds like the same procedure. He physically examines my hands, touching each joint, asking me to move them, my knees, ankles, feet. Has me raise my arms, bend my elbows, knees, etc to check for range of motion. He always listens to my lungs and heart and checks my lymph glands. He's very thorough. Kim > > Hi Pris -- I don't know how to explain it exactly. She has me make > fists -- open and close my hands. She feels each joint in each > finger -- looking for swelling, warmth or tenderness. She is > checking flexibility and mobility. My neck is kind of stiff for > example -- so she asks if I am doing my exercises and then she sees > if I am better or worse or the same as my last visit. She has me lie > on my back and raises my legs, bends my knees, feels the knees to > see if they are still swollen (they were a big problem for awhile), > and so on. She checks the tendonitis I have had in my wrists. She is > looking to see if I still clinically present RA. I don't really have > many visible signs anymore, except some of the limited range of > motion in my neck and my shoulders. She won't check my labs again > for several months -- but she spends a lot of time in the physical > exam every time I go. She's a great doctor. She really cares about > my progress, pain and discomfort. I can tell I am lucky -- you hear > a lot of different stories on these boards. > > I don't know how a doctor can evaluate and diagnose you properly > without really examining your body -- this disease is not based > solely on lab work but also on clinical presentation. You might want > to check out someone else if you have any other options. I hope that > helps. > > Bonnie > > > > She spends at > > > least 45 minutes with me each time I see her -- she checks every > > > joint -- hands, feet, knees, shoulders, elbows, hips, -- has me > move > > > my neck and jaw, looks at my spine, etc.>>>>> > > > > > My rheumie has never checked any of my joints! I have a feeling > she is a > > " hands off " doctor! Maybe it is something you could explain to all > of us so we > > could check our own? > > What does she do? > > Just have you move it and ask if it hurts, or what? > > Could you give us a few examples? > > Thanks, she sounds great, > > Pris > > > > > > > > > > > > > > > > > > > > ************** > > Start the year off right. Easy ways to stay in shape. > > > > http://body.aol.com/fitness/winter-exercise? > NCID=aolcmp00300000002489 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 , Plenty of people with RA do very well. Please keep in mind that it's likely that those with more problems than average join groups like this one. RF does not necessarily reflect disease activity. Not an MD > [ ] really depressed > > Hi, > > I was was just diagnosed last week. the doctor spent all of 5 minutes with me. I > thought the > course of this disease was variable but now I have read that it is progressive. Is > anyone here > doing well or know of anyone doing well with RA? I don't know how much more I can > stand. > I just replaced two hips, five weeks apart and have had RA pain ever since. I was a > nurse and > have seen suffering. I'm not into life at any cost. Reading these posts really has me > worried. > > One more question. Does the RF level reflect disease activity? Mine is just a few > points above > normal but supposedly this is what I have. > > Thanks for the input on minocycline, > > Quote Link to comment Share on other sites More sharing options...
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