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Medical Forum / Diseases and Disorders / Arthritis / December 2005I was approved for Remicade
Thanks to everyone who offered advice with regard to my Ankylosing Spondylitis condition. I finally got off my backend and requested my Rheumy start me on Remicade. Yesterday the call came with insurance approval and next Wednesday the 21st will be my first appointment. I may have asked this before but my low back is in such severe pain I wondered if it was the AS or discs pinching nerves? The pain is so intense it's now affecting my pelvis and hips. I have never up to a few months ago ever had hip pain this intense. And next week my Orthopedic Dr. scheduled for me two different days MRI's on the shoulders with the dye injected. You can only do one per day. This is to see if there is a tear in each shoulder or just frozen shoulder or AS. I did a CT Scan on my stomach to see what is causing gastric distress so intensely. Just another fascinating day in the life of an AS riddled person. Thanks for any info or advice as usual. As for the job I started a few weeks back I received my first paycheck and wow did it feel good. My first pay from working in almost a year, although I did some fill in work months ago. But unless the Remicade works I don't see myself working more than five years due to the pain. Blessings to all this Holiday season. Take care all. > Thanks to everyone who offered advice with regard to my Ankylosing > Spondylitis condition. I finally got off my backend and requested my [quoted text clipped - 15 lines] > don't see myself working more than five years due to the pain. > Blessings to all this Holiday season. Take care all. I am sorry to say that you should not expect a miracle. The type of damage that AS does to a persons back will not be corrected with Enbrel or Remicade but it could do great things to keep further damage from taking place. It is why we push people so hard to control what we have with DMARDs. Do not get me wrong,,,, it is great news that you have a chance for a better life,,, a longer working life... This type of news really must have updates for us and there are a few people that will helps you through the infusions here. You are in my prayers today and we want you to have a Merry Christmas with less back pain. Harv TLD, Please don't give up hope yet. With the biologics, many people are able to continue working and having a semi-normal life. However, everyone is different. It will be helpful to find out via the MRIs what exactly is going on. I definitely can relate regarding the severe lower back pain. AS has also affected my shoulders, wrists and feet. But I am still working-granted not a manual labor job, but I put in my 8 hours every day. I am so excited for you! I would love for you to post again after you've had a few infusions and let us know if you have been helped and how it's going. I will say a prayer for you and send you some good vibes, Charlene Thanks Charlene and Harv! If you have a chance let me know what you think about my CT scan results I received today from last Thursday's test. My Dr.'s nurse called me a few hours ago and said my CT scan on my stomach in which I drank a mixture showed that I have a Cyst on the right lobe of my liver. She said there were a few markings I believe was her word in 5-10 millimeter size. She said this could be the reason I am having stomach distress and what I mentioned before as moderate to severe left side rib pain. I'll do some research on the computer myself. She also said the scan showed a small tear in the sac of my heart. She said it is called pericardial effusion. Again I'll do some research. I am glad the scan showed something one way or the other because there are times I wonder if I'm becoming a hypochondriac with all the different types of pain I feel. I also wonder if all the meds have contributed to the cyst on my liver? Next up is the Remicade. And of course the shoulder MRI's next Tuesday and Thursday with the dye injected. Eventually the MRI on my cervical area just to check what's going on there since the ten year ago fusion between C-3 and C-6. Another question is my hip pain. Would the low back pain I'm suffering from contribute to the pelvic and hip pain? I wonder if the nerve impingement in my low is contributing to this pain as well? Gosh lots of stuff going on. Does anyone else in pain ever wonder what a pain free life would be like? Again thanks for all the info, advice and well wishes. Prayers and happiness for all! this stuff sounds really serious. I have a cyst in liver, two in kidney and one in other kidney. they don't seem to concerned about it. But the heart tear sounds bad. I hope they get a move on these issues quickly for you and give you answers right away of what has to be done to fix the problems. It looks like he is moving on this with the MRI, CT scan and such. Wishing you the best I do often wonder what a pain free life would be like too. I don't know if I remember anymore.  SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Thanks Charlene and Harv! > [quoted text clipped - 21 lines] > free life would be like? Again thanks for all the info, advice and > well wishes. Prayers and happiness for all! I am an "oldie" on AMF and ASA, so I know the reality of what Harvey is saying. With years of experience behind me, I try not to paint a false picture to someone who asks if this disease is progressive, or if the pain ever goes away. In the long run, it will benefit the newbies to know the truth, then they can move on and learn to cope with it, whether it be OA, RA or Fibro. They will still need encouragement and support, but they won't be looking and hoping for medicine to take away all their pain and discomfort. Yet, oh how we NEED those meds! Nanny >> Thanks to everyone who offered advice with regard to my Ankylosing >> Spondylitis condition. I finally got off my backend and requested my [quoted text clipped - 28 lines] > pain. > Harv I am glad your RD is going to do something for you and glad that your gp is going to bat for you to get help with the AS. That is a good thing. I hope all goes well and you get the best treatment there is for you. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Thanks to everyone who offered advice with regard to my Ankylosing > Spondylitis condition. I finally got off my backend and requested my [quoted text clipped - 15 lines] > don't see myself working more than five years due to the pain. > Blessings to all this Holiday season. Take care all. TLD, I do know from the spondylitis site that hip pain can often go hand in hand with the lower back pain. I experience problems on each side at the groin area, myself. Also costochondritis (sp?), which causes ribcage/chest pain often goes along with ASl I'm sorry, but I am not familiar with the heart thing at all, but it sure doesn't sound good. Nann is right regarding people who think that they are going to start a new med and that all the pain is going to go away. I was one of those people, (those Enbrel commercials really got to me). It is all a highly individual process. At the spondy site, there are several people with back and neck fusions who are still living pretty normal lives, now that they are on tnf inhibitors. Of course, there are others who aren't moving at all (and I won't even mention the guy who had several back fusions broken when he was rear ended, but couldn't communicate that to the EMTs who were working on him at the scene, and who made everything worse). For me and my RD, our goal is to be pain free. I am glad that I found a doc who wants to settle for nothing less. However, I have yet to attain that goal, and doubt that I ever really will. But I will not give up. I read about new meds coming out....talk to other people...and try to listen to my body. Learning to cope as Nann said is part of that process as well. Good luck with the MRIs and the infusions. Again, I would be very interested to hear how it all works out for you, Char Thanks Char. Today is so cold. Once a year only I get severe pain around the bone under the eye and spreads to the right side of my jaw. I think they call it Myofacial. I don't get it but once a year like I said but it's a real pain in the butt. My Oral & Maxillofacial Surgeon says it's from clenching my teeth at night and a while ago made me a retainer. I think it's the AS and he agrees somewhat but it's like he said he's not up on AS. But my jaw gets tighter than a noose. But this time it's centralized more towards the upper jaw near the right ear. Oh well. I wonder if it's a flare up or a result of cold weather? Who knows. About the pain in my hips yes I agree it's coming from the low back. I gotta get on a diet but it's Christmas and who can diet at Christmas! Thanks and blessings to all. |
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