Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 hello all, My name is Toni and I am in Texas. I have RA, OA and Fibro. I was started on Embrel about 11 weeks ago. I still am waiting for improvement. I am still on 15 mg MTX a week and suppose to be on 5 mg prednisone daily. Prewcription ran out and doc is on holiday. I also take Bextra 10mg. We only have one doc so it will ahve to wait intil he returns. I am in no hurry to take prednisone anyway! I am wondering how log should I take the enbrel before I give up on it and move on to another Biologic DMARD. I was dianosised almost 15 months ago. I started on Arava. It worked for a year and then stopped working. I changed docs..docs tend to move around a lot here. New doc started me on MTX pills first which made me really ill so we changed it to injections. IN the past six months I have had some strange things happen. I ruptured a bursa in my elbow. It was terrible. It looked like a huge goose egg on the pointy part of the elbow. Now I have another huge swollen bursa behind my right knee. My doc called it a bakers cyst and say they are very common in people with RA. He wants me on prednisone to shrink it. I would have prefered if he had injected it with steriods and lidicaine and sent me on my way. He wants to wait to see if it will resolve on its own. So far its painful, makes my knee feel squishy and has been causing a lot of pain. I am also having problems with my right ankle with pain and swelling. I have no clue what my doc is going to do. I am getting very frustrated with this disease. I am tired and ready to quit!! I had to beg my doc to get a handicapp plackard and all he would write for was a 6 month temporary. He keeps telling me things will settle down and improve. To add to all of this, while I have been away from work on medical leave..they have screwed me and are making me wait SIX months with no pay for Long Term Disability. So no income has made getting meds difficult. I have had to stop many of my meds when they run out until I can get enough money to pay for them. I asked my doc, rheummy and PCP about getting samples to tie me over and both said they have no samples to give. So I am pretty sure part of the reason I feel so crappy is the lack of meds. I have tried all kinds of programs and agencies and they have all turned me down. I have insurance and there attitude is its not there problem to help cause I can't pay my co-pays. If I had no insurance they would jump at the opportunity to help me. So once again I fall through a big hugh beaurocratic crack! Well happy new year...and I am praying everyone has a great new year! Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Drugs such as Fosamax are used to combat bone loss. There are several others; Fosamax is the name that comes to mind. Not everyone can take Fosamax and the similar tablets. Alternatives applications are nasal sprays, patches, and even injections. I had to stop Fosamax because of stomach problems, and these alternatives were considered for me. In addition to Calcium with Vitamin D (and perhaps magnesium), a calcium-rich diet is extremely important -- leafy green vegetables, dairy products, etc. Weight-bearing exercise, such as walking, helps one's bones. Dying from AIH is worse than having bone deterioration, I think. Incidentally, a bone scan four years ago, just after I began taking Prednisone, showed severe osteoporosis. I had no choice but to continue the Prednisone. I was very, very careful to eat well, to excercise as much as I could (which wasn't much) and not to skip a dose of Fosamax. Three years later I had to stop Fosamax due to a stomach problem that was discovered. At the same time, I learned I had another autoimmune disease, celiac disease, which keeps one from absorbing nutrients properly. 18 months after I began treatment for celiac disease, another bone scan shows I no longer have severe osteoporosis, but only osteopenia, a far, far lesser condition. No, Prednisone does NOT cure AIH. Nothing cures AIH. Prednisone and Imuran slow the progression of AIH, which is an incurable, deteriorative, progressive disease. AIH, untreated, does kill most people. I'm happy that some of you have had such good fortune, for the time being. You are not cured. I'm sorry, I'm not saying that to be cruel, but you are not cured. None of us are. The disease is merely slowed to an acceptable level, if we are lucky. Harper In a message dated 9/26/2004 4:32:19 AM Pacific Standard Time, writes: Harper or Anyone Else,The bone loss while on pred. troubles me after reading postings from others who indicate that is one reason they chose not to take pred. I cotinue to take pred but share concern over bone loss. I was using estrogen but discontinued a few months ago when the danger of hormone replacement therapy was front page news. I am wondering if it is better to continue with HRT while on pred. to minimize bone loss/ or is estrogen another substance one should not add to an already troubled liver? I do take 1600 mg. calcium with Vitamin D every day. Information from anyone would be greatly appreciated.Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 In a message dated 9/26/2004 4:32:19 AM Pacific Standard Time, writes: For anyone on long term Prednisone, I encourage you to check with your internist about preventative Fosamax (or Actonel). I don't think a hepatologist or GI doc would prescribe it. I should mention that I am 54, so I am at the age when osteoporosis can become a problem. My GI was most insistent that I take Fosamax or Actonel until tests showed that celiac disease had made it inadvisable for me to use. Most women I know who are in their 60s or older take Fosamax on a preventive basis, anyway. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 In a message dated 9/26/2004 4:32:19 AM Pacific Standard Time, writes: And the book by Mellissa what her face is getting old information. Please don't tell me you are going by that book. The Guide to Liver Disease by Dr. Palmer was first published in 2000. She has a new, 2004 edition, available through Amazon.com or her website, liverdisease.com. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 My GI told me that he used to feel deep sadness when he had a patient needing large doses of Prednisone, because he knew what the side effects were likely to be. Now, he said, he has other things to bring to bear that mean you don't have to choose between early death and bone loss, blindness, etc. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Abby, Thank you so much for sharing your blog! I really love the audiogram with it's " to the point " little photos on it! I love your description of the 911 call especially. It's just wonderful isn't it! Deb --- wrote: --------------------------------- Miracles Happen - Hearing Is Restored Miracles Happen - Hearing Is Restored Messages In This Digest (1 Message) 1. My cochlear implant blog From: Abbie View All Topics | Create New Topic Message 1. My cochlear implant blog Posted by: " Abbie " contradica@... contradica Sat Aug 4, 2007 2:00 pm (PST) After several months of reading different forum, blogs, white papers, websites and realizing how much it helped me. I wanted to do my part and help others wandering down the road. I decided to start up a blog about my whole journey with getting a cochlear implant. If anyone else has a blog I would love to be able to read it. http://contradica.blogspot.com/ Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) Recent Activity 4 New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
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