Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Sam, I, too, have failed on two BRM's (Enbrel and Remicade) but now Kineret has been working for a while. I take it with Arava and haven't had to take anymore MTX. Of course the need for prednisone comes and goes...right now I am at 15 mg per day. As far as a second opinion goes, I live in S.W. Missouri and when I was diagnosed, the Hospital Pathologist was so unsure of my rheumy's rare diagnosis that they elected to send my entire medical file (pretty big at this point) to Stanford for a second opinion. They concurred with my rheumy and the diagnosis still stands seven years later. You can bet that if I were as close as you are to Stanford, I probably would have been seen there. I have traveled as far as St. Louis University (5hrs) for second opinions on joints and surgeries, but it sure wasn't easy. Travel is never easy when you are sick and hurting, but sometimes it is necessary. Hope my experience can help you somehow. Take care. Stay Healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Hello Everyone, I am having trouble getting this thing under control. I am currently tapering off of prednisone because I really did not feel any better on the low maintenance dose and 60 mg a day is not an option. I take max methotrexate once a week in pill form, tried the shots and did not see a difference. I have been through both Enbrel and Humira and have " failed " at both of them. I am supposed to call my rheumatologist Thursday and let him know if the last Humira shot did any good, it did not. The next step is Remicade. I am fine with the new med, had been really nervous about IV infusion but have settled my nerves. So, today I saw my primary care who coordinates everything ( I am also doing physical therapy 3 times a week and seeing a family therapist once a week). I asked her if it would be a good idea to go to Stanford or UCSF and get a second opinion. What I am hoping for is someone to re-do the x-rays, blood work, exam, consult and just re- enforce what my rheumatologist is doing. Maybe there's a super secret amazing cure hiding somewhere. At any rate, it's going to take a while for the referral to get underway. Has anyone else done this kind of thing? Do you inform your current rheumatologist that you're getting the other opinion? Has anyone travelled away from home to get the second opinion? I live about 2 hours from Stanford and San Francisco... do you think they will be able to coordinate all the tests, consults etc... for a one day super-appointment? Maybe just one overnight? On another note, I need help clarifying my diagnosis. When I was first diagnosed at 16 they called it Still's Disease/JRA. Now that is has come out of remission is it just Still's or is it still considered JRA because it first appeared when I was young? Or do we just call it RA at this point since I don't have the fevers regularly.... When you explain to someone what you have how do categorize it? It's come up a lot lately since I am limping a bit more and puffy so more people seem to ask about it. Thanks for all your input and I am getting really excited to meet everyone in Las Vegas!!!! Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Sam, we're really excited to meet you also. Dear, I think that it sometimes takes a few years to find the right medications that work and while I think a second opinion is fine, I wouldn't run from doctor to doctor looking for a magic cure. I've used the same doctor since 1977. He's good, he diagnosed me, took me into remission for years at a time and is a very caring man. I saw someone else for a short time and wasn't as comfortable. He diagnosed mine as AOSD, Adult Onset Stills Disease although I was just young at the time. I don't have many sympoms now days but am left with damage from the years past. I hope any of this helps. By the way, I travel a couple hours one way to see him every two months also and find it worth the trip. Wishes for better health Sam and see you soon, Second Opinions... Hello Everyone, I am having trouble getting this thing under control. I am currently tapering off of prednisone because I really did not feel any better on the low maintenance dose and 60 mg a day is not an option. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 - Just wondering - when you say your doctor helped you to be in remission for years - does that mean " drug free " remission? Thanks, > Sam, we're really excited to meet you also. Dear, I think that it > sometimes takes a few years to find the right medications that work > and while I think a second opinion is fine, I wouldn't run from doctor > to doctor looking for a magic cure. I've used the same doctor since > 1977. He's good, he diagnosed me, took me into remission for years at > a time and is a very caring man. I saw someone else for a short time > and wasn't as comfortable. He diagnosed mine as AOSD, Adult Onset > Stills Disease although I was just young at the time. I don't have > many sympoms now days but am left with damage from the years past. I > hope any of this helps. By the way, I travel a couple hours one way > to see him every two months also and find it worth the trip. > Wishes for better health Sam and see you soon, > Second Opinions... > > > Hello Everyone, > I am having trouble getting this thing under control. I am > currently > tapering off of prednisone because I really did not feel any better > on the low maintenance dose and 60 mg a day is not an option. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Yes, except for Naprosin. ----- Original Message ----- From: sullivan - Just wondering - when you say your doctor helped you to be in remission for years - does that mean " drug free " remission? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Penacilamine and Prednisone put me into remission for many years during the 80's, without fevers or meds except for the Naprosin and pain killers for damage that had occured. I had a bit of a flare the first of the year so am now on MTX and Naprosin but doing pretty well. Hope this explains it better. Melt - Just wondering - when you say your doctor helped you to be in remission for years - does that mean " drug free " remission? Quote Link to comment Share on other sites More sharing options...
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