Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hi Kris Sorry you had to join the group but hopefully we can help you and give you some answers plus support. There is probably a lot more meds out there now than when your uncle had it. I am so sorry that he passed away from it. There are a lot of new biologic meds out there now and they have helped a lot on this list. Usually they start you out on something less expensive and strong such at prednisone or/and methotrexate. I am 43 and live in Missouri with my two teenagers and hubby. Joy Kris <krisann22@...> wrote: Morning all, I was just sort of diagnosed last week with RA from my GP. I am seeing a Rheumy April 3rd to confrim. My bloodwork was pretty good but for a few things. Sed rate was normal but Rfactor was off the charts. Also urine came back with wbc and moderate rating for squamous and bacteria. So of course I am worried. I had an uncle die of RA 22 years ago. He had one of the bad cases, totally crippled and never went into remission. Only joints so far are my hands and feet, can't wear my heels anymore lol, and am always tired it seems. My GP put me on Feldene and the lowest dosage of celexa to try to control my worrying and stressing out. So of course my mind is in overdrive thinking of all these terrible things. I am a single mom, 44 years old, 3 kids one of whom has Down syndrome. So can anybody give me some advice on all this? Thanks so much. Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 welcome Kris! I was Dx'd 2 years ago @ the age of 44 also.When you say off the charts on the RF..do you know the numbers? I am curious. ( mine was pretty high too 579)I just had a whole slough of blood tests re-one by my new rheumy.. so iam curious to see if that RF holds. It's a good sign your Sed rate is normal.. at least that is what I understand.Mine has always been normal despite most of my joints involved... I think the meds are keeping the erosions at bay. ( waiting on some new xrays) Hang in there and if you want to talk any time email me at fmt2002@... Where are you from? Faith ( california) > > Morning all, > > I was just sort of diagnosed last week with RA from my GP. I am > seeing a Rheumy April 3rd to confrim. > > My bloodwork was pretty good but for a few things. Sed rate was > normal but Rfactor was off the charts. > > Also urine came back with wbc and moderate rating for squamous and > bacteria. So of course I am worried. I had an uncle die of RA 22 > years ago. He had one of the bad cases, totally crippled and never > went into remission. Only joints so far are my hands and feet, can't > wear my heels anymore lol, and am always tired it seems. My GP put me > on Feldene and the lowest dosage of celexa to try to control my > worrying and stressing out. > > So of course my mind is in overdrive thinking of all these terrible > things. > > I am a single mom, 44 years old, 3 kids one of whom has Down syndrome. > > So can anybody give me some advice on all this? > > Thanks so much. Kris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Thanks all for the welcome. I hate to say what my RF number is as Im afraid that it is bad. Its 967 so that's off the charts Im pretty sure. My GP even said holy buckets as she was reading me the results over the phone. But like I said SED rate is normal. So that point is driving me crazy not knowing what that means. Only my hands and feet are effected right now. I was taking feldene until I see the Rheumatoid Dr but now I am off of it for two days as my feet are all puffy with water retention which is a side effect. She wants to see if they get better off the meds and I am only to take tylenol for the next two days. Oh joy. LOL. Ok enough whining. And I am from the Twin cites Mpls to be exact. > > > > Morning all, > > > > I was just sort of diagnosed last week with RA from my GP. I am > > seeing a Rheumy April 3rd to confrim. > > > > My bloodwork was pretty good but for a few things. Sed rate was > > normal but Rfactor was off the charts. > > > > Also urine came back with wbc and moderate rating for squamous and > > bacteria. So of course I am worried. I had an uncle die of RA 22 > > years ago. He had one of the bad cases, totally crippled and > never > > went into remission. Only joints so far are my hands and feet, > can't > > wear my heels anymore lol, and am always tired it seems. My GP > put me > > on Feldene and the lowest dosage of celexa to try to control my > > worrying and stressing out. > > > > So of course my mind is in overdrive thinking of all these > terrible > > things. > > > > I am a single mom, 44 years old, 3 kids one of whom has Down > syndrome. > > > > So can anybody give me some advice on all this? > > > > Thanks so much. Kris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? For me this is standard for any specialist me or my kids have seen. Once we saw them then it was easy to get appointments, don't understand why it takes so long to get in the first time. After we moved down here to MS it took almost a yr for me to get in with a specialist for the RA and unfortunately the military was of no help. Tammie In a message dated 1/10/2008 10:53:30 A.M. Central Standard Time, bschnellenberger@... writes: I have been recently diagnosed one month with EBV and now have a concurrent diagnosis of RA. I have been struggling at work and in my personal life for 4 months and trying with my family GP to figure out what has been wrong. Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? Has anyone out there had EBV diagnosis prior to the RA? I just joined the support group today and will welcome any suggestions about what to expect next. Thank you. **************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 10, 2008 Report Share Posted January 10, 2008 I don't have EBV but I waited that long for my rheumy and it was worth the wait. [ ] Newly Diagnosed with RA I have been recently diagnosed one month with EBV and now have a concurrent diagnosis of RA. I have been struggling at work and in my personal life for 4 months and trying with my family GP to figure out what has been wrong. Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? Has anyone out there had EBV diagnosis prior to the RA? I just joined the support group today and will welcome any suggestions about what to expect next. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Same here. Is there that many people with it that getting to see a doctor takes so long? I thought it was just us because it was at a military hospital... Pam McNally <McNacks@...> wrote: I don't have EBV but I waited that long for my rheumy and it was worth the wait. [ ] Newly Diagnosed with RA I have been recently diagnosed one month with EBV and now have a concurrent diagnosis of RA. I have been struggling at work and in my personal life for 4 months and trying with my family GP to figure out what has been wrong. Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? Has anyone out there had EBV diagnosis prior to the RA? I just joined the support group today and will welcome any suggestions about what to expect next. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 ...What did you do or take for pain in the interim? Thanks, Betty > > I don't have EBV but I waited that long for my rheumy and it was worth the wait. > > [ ] Newly Diagnosed with RA > > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I suffered. I actually called the rheumy's office and cried to the secretary but there were just no openings. I came down with RA overnight, literally. My hands, elbows, knees and toe joints were swollen to the point that I actually just laid on the sofa for 8 weeks. My general doc had put me on prednisone for two packs but while it was great on those drugs as soon as the pack wore off I was back to where I started. As soon as I got into the rheumy office and was put on methotrexate, a world of difference, almost back to normal, or the new normal. Good luck. mary [ ] Newly Diagnosed with RA > > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Most doctors I have been to have a set amount of appointments per week for new patients with extended times allotted per appointment. My first appointment with my new Rheumy took 6 weeks to get into, but the appointment lasted over 30 minutes, actually time in with the doctor. I schedule my monthly appointments now, no problem, but the appointments are much shorter, mainly it's a how ya doing, how's the meds? Now, I can get in in a same day or next if I have a flare. And in a real emergency, I can just go in and sit in the office until the office staff can make time on the schedule. > > Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi Betty and welcome. This is a great group. I think your wait time is pretty average, but in the meantime, I would be pounding on my internist's door, asking for pain meds, NSAIDs, steroids, anything to get me through the 8 weeks. You can also call the rheum's office weekly and ask about cancellations. If you have access to a pool, try to get some water exercise, that makes a big difference for me when I'm flaring. Also, if you're not sure about whether you'll like this rheumatologist, it couldn't hurt to get on another wait list for an alternate, so you don't have to start from scratch if need be. We relocated this fall and I didn't like the first person I saw, but the 2nd was pure gold. Best of luck, Kate F [ ] Newly Diagnosed with RA > > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Pam, There are only about 5000 rheumatologists in the entire US. That's why it often takes so long to get an appointment. Not an MD > Re: [ ] Newly Diagnosed with RA > > Same here. Is there that many people with it that getting to see a doctor takes so > long? I thought it was just us because it was at a military hospital... > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I think it's more that there are too few rheumatologists to go around. Outside urban areas there may be only 1 or 2 within driving distance. I work for a large, Level I trauma center with several branch clinics, and they only have 1 rheumatologist who books 4 months out and doesn't even see fibro patients. When I was in the military medical system there were often wait lists in many specialties because priority had to go to active duty patients. When demand for services is too great, as it is with the current deployment demands of the war, some military clinics have to close to dependents and require them to seek care in the community. [ ] Newly Diagnosed with RA I have been recently diagnosed one month with EBV and now have a concurrent diagnosis of RA. I have been struggling at work and in my personal life for 4 months and trying with my family GP to figure out what has been wrong. Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? Has anyone out there had EBV diagnosis prior to the RA? I just joined the support group today and will welcome any suggestions about what to expect next. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Yes, I think it is pretty standard to wait a long time for your appointment with a specialist, unless you have a referral from your primary care doc who diagnoses you with an acute (emergency) problem. The specialist books you as a " new patient " requiring a full work-up - usually takes about an hour - Lilian (formerly a receptionist for a surgeon) spincity64@... wrote: Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? For me this is standard for any specialist me or my kids have seen. Once we saw them then it was easy to get appointments, don't understand why it takes so long to get in the first time. After we moved down here to MS it took almost a yr for me to get in with a specialist for the RA and unfortunately the military was of no help. Tammie In a message dated 1/10/2008 10:53:30 A.M. Central Standard Time, bschnellenberger@... writes: I have been recently diagnosed one month with EBV and now have a concurrent diagnosis of RA. I have been struggling at work and in my personal life for 4 months and trying with my family GP to figure out what has been wrong. Now I have to wait for two more months to get an appointment with a rheumatologist. Is this a standard waiting time to see a specialist? Has anyone out there had EBV diagnosis prior to the RA? I just joined the support group today and will welcome any suggestions about what to expect next. Thank you. **************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 11, 2008 Report Share Posted January 11, 2008 In texas I was on a 10 month wait list, I came back to IL with a 4 month wait list. --- In , " karpeidm " <bschnellenberger@...> wrote: > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Welcome karpeidm, In my area, a 3-month wait for a rheumatologist is normal. I got in within a few days when my pulmonary doctor called the rheumatologist directly. When my first rheumatologist proved to be inadequate, it was my GP calling another rheumatologist directly (who wasn't taking new patients) to get me in with him. He's great. Before any of that, my GP had put me on Plaquanil immediately. It is not supposed to have much effect for several months but I could feel a difference much sooner. I'm glad you're on the list and hope you find one as good for EBV to find out what is working for people. My GP is responsive to suggestions/ideas I bring. There are a common first-approach medications that are easy/safe to implement. My GP prescribing things is less important now that I have a good rheumatologist, but the first one I went to was terrible, and so effectively it took 7 months to get a good rheumatologist. (No wait up front, but 4 months with the first, then 3 month wait for the second.) Hopefully that won't be your experience but you might assume it will be you and your GP for longer than 4 months, if you find you have to find another rheumatologist. So your research can still be very important as you and your GP. In my case, once I got off the methotrexate that didn't help and so was able to take ibuprophen, I found that 2400 mg of ibuprophen (per my GP) helped a lot. That, plaquanil, tramadol for pain, and lyrica for the fibromyalga are what I am on. Now that the lyrica is kicking in, I am reducing the tramadol dramatically. Welcome to the group & I pray for you to find effective relief soon. It sounds like you have too much on your plate; I couldn't function even with this help until I finally admitted it and went on disability. Losing 2/3 of your income is terrible but at least I am not a zombie puddle. laurel --- In , " karpeidm " <bschnellenberger@...> wrote: > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 When I was first diagnosed I was given the choice of two rheumatologists. The first was local but had a 6 month waiting list. Since I was awaking every morning with stiff fingers which were stuck in position for 1 hour or more, I couldn't imagine living like that for 6 months. So I went to the one who was an hour away since he was just establishing his practice in the area and had openings. I've heard the one I wouldn't wait for is fabulous and I hate how long it takes me to get to my current doctor so I'm thinking about chaging (even though I'm generally happy with his care). susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 I guess two more months isn't that long to wait for someone who knows this disease. I'll stick it out and call every Monday to see if anyone cancels in the interim. Thanks for your support . Betts Krauss <sekrauss@...> wrote: When I was first diagnosed I was given the choice of two rheumatologists. The first was local but had a 6 month waiting list. Since I was awaking every morning with stiff fingers which were stuck in position for 1 hour or more, I couldn't imagine living like that for 6 months. So I went to the one who was an hour away since he was just establishing his practice in the area and had openings. I've heard the one I wouldn't wait for is fabulous and I hate how long it takes me to get to my current doctor so I'm thinking about chaging (even though I'm generally happy with his care). susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Thanks Laurel... This really is just the tip of the iceberg I know. Trying to find out what works for everyone when we are all so different but just have the same disease. It truly looks like it will be trial and error. My GP has been good...but now he even realizes I need more specialized help. I can hang in there until March...or whenever I find the right doc for me. Thanks for your encouragement. Betts prescottjuniper <@...> wrote: Welcome karpeidm, In my area, a 3-month wait for a rheumatologist is normal. I got in within a few days when my pulmonary doctor called the rheumatologist directly. When my first rheumatologist proved to be inadequate, it was my GP calling another rheumatologist directly (who wasn't taking new patients) to get me in with him. He's great. Before any of that, my GP had put me on Plaquanil immediately. It is not supposed to have much effect for several months but I could feel a difference much sooner. I'm glad you're on the list and hope you find one as good for EBV to find out what is working for people. My GP is responsive to suggestions/ideas I bring. There are a common first-approach medications that are easy/safe to implement. My GP prescribing things is less important now that I have a good rheumatologist, but the first one I went to was terrible, and so effectively it took 7 months to get a good rheumatologist. (No wait up front, but 4 months with the first, then 3 month wait for the second.) Hopefully that won't be your experience but you might assume it will be you and your GP for longer than 4 months, if you find you have to find another rheumatologist. So your research can still be very important as you and your GP. In my case, once I got off the methotrexate that didn't help and so was able to take ibuprophen, I found that 2400 mg of ibuprophen (per my GP) helped a lot. That, plaquanil, tramadol for pain, and lyrica for the fibromyalga are what I am on. Now that the lyrica is kicking in, I am reducing the tramadol dramatically. Welcome to the group & I pray for you to find effective relief soon. It sounds like you have too much on your plate; I couldn't function even with this help until I finally admitted it and went on disability. Losing 2/3 of your income is terrible but at least I am not a zombie puddle. laurel --- In , " karpeidm " <bschnellenberger@...> wrote: > > I have been recently diagnosed one month with EBV and now have a > concurrent diagnosis of RA. I have been struggling at work and > in my personal life for 4 months and trying with my family > GP to figure out what has been wrong. Now I have to wait > for two more months to get an appointment with a > rheumatologist. Is this a standard waiting time to see a > specialist? > Has anyone out there had EBV diagnosis prior to the RA? > I just joined the support group today and will welcome any > suggestions about what to expect next. Thank you. --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 I am a 31 yr old woman.I was recently dx with RA, entirely by accident. I have had problems with Degenerative Joint Disease in my spine, feet and knees. I have had surgery on my back three times for degeneration that had left me with severe damage to my joints. And had surgery on both feet because of Osteoarthritis. Well i have still been having trouble with my feet because of pain and decided to go to a second doctor for a second look at the problem. After looking at my medical history, surgical history, and suspision that there was alot more goin on that what we knew. He did a blood test and it came back positive. I dont know exaclty what they are going to do, or what all of the tests show but i will find out soon. When I say newly diagnosed i mean like within the last week. So any information is welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Hi , You sound like me! I have osteo in the feet, toes, spine, hips (just replaced), all that and now RA too. It does confuse the hell out of the doctors because without obvious swelling, they never guessed RA. --- In , " Wendie Wagner " <wendiewagner2003@...> wrote: > > I am a 31 yr old woman.I was recently dx with RA, entirely by > accident. I have had problems with Degenerative Joint Disease in my > spine, feet and knees. I have had surgery on my back three times for > degeneration that had left me with severe damage to my joints. And had > surgery on both feet because of Osteoarthritis. Well i have still been > having trouble with my feet because of pain and decided to go to a > second doctor for a second look at the problem. After looking at my > medical history, surgical history, and suspision that there was alot > more goin on that what we knew. He did a blood test and it came back > positive. I dont know exaclty what they are going to do, or what all > of the tests show but i will find out soon. When I say newly diagnosed > i mean like within the last week. > > So any information is welcome. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Hi Wendie, Welcome to the group. I also have Osteo and DJD along withthe RA. I take Methotrexate and am going to start Humara to help decrease the erosion RA causes. Some Drs still prescribe steroids it just depends on what his/her preference is. Heidi M On Feb 10, 2008 10:07 PM, savannahhipchick <lfriedman5@...> wrote: > Hi , > > You sound like me! I have osteo in the feet, toes, spine, hips (just > replaced), all that and > now RA too. It does confuse the hell out of the doctors because without > obvious swelling, > they never guessed RA. > > > > > > > > I am a 31 yr old woman.I was recently dx with RA, entirely by > > accident. I have had problems with Degenerative Joint Disease in my > > spine, feet and knees. I have had surgery on my back three times for > > degeneration that had left me with severe damage to my joints. And had > > surgery on both feet because of Osteoarthritis. Well i have still been > > having trouble with my feet because of pain and decided to go to a > > second doctor for a second look at the problem. After looking at my > > medical history, surgical history, and suspision that there was alot > > more goin on that what we knew. He did a blood test and it came back > > positive. I dont know exaclty what they are going to do, or what all > > of the tests show but i will find out soon. When I say newly diagnosed > > i mean like within the last week. > > > > So any information is welcome. > > > > > Quote Link to comment Share on other sites More sharing options...
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