RA??

pqqkieturner
on 2/11/12 8:58 am - MI
I have read all the posts, and thought I would let you know my story.. I was diagnosed with RA at 23 yrs. I fought it for about 5 yrs, then finally gave in. I REFUSE to take any steroids, because my mother had RA and took steroids and I watch them slowly kill her, her skin was so thin, if she cut herself, they couldn't put stitches in, because the skin just tore. And she died at age 54 from liver problems that they connected to her steroid usage over 30 yrs. Now me, I was, get that WAS, on Enbrel for 9 yrs. I will say during those years, i was down to taking just 1/2 a vicodine 500mg pill at bed time to help with restless leg. But after 9 yrs of usage, I developed pain, unbelievable pain in my tailbone area. AFter several tests, I was found to have a Chorndoma tumor on my tailbone area.. within 2 weeks they had me in surgery removing the S3,4,5 and tailbone area. I thank GOD everyday it was begine, but I now live with a 17 inch scar on my back side, and a hernia on the back side, that eventually one day I will end up with a colospocy (sp?) bag. All this is traced back to the 9yrs of Enbrel usage. NOW I am 45, and NEVER again allowed to use a TNF inhibitor. I have to use the BIG boys. The pain is unbelievable, I take 1000 mg vicodine, and lyrica for the nerve damage I now have after surgery. I am also taking methrotrexate by injection every Fri, because when you have the RNY gastric bypass, the body doesn't break it down fast enough, and it gets caught in the liver, and you get very sick.. I am also right now taking Rituxan. Which is a Chemotherapy. they give it for pain control now. But the side effect from this is a brain infection, so doctors have decided to take me off it, because I truly don't see it working. the pain is still overboard. So next since I can't take the Enbrel, and remicades. I have to take the newest thing-- IL6 inhibitor drugs. Aceterma.. it is suppose to be safer then the enbrel. The best I can tell you is PLEASE listen to your body, and your doctor. Please be careful. They always claim the drugs are safe, then after years of use, there is always something that comes up.. With the Enbrel, Bone cancer is a big thing. of course they won't advertise the problem with it, so please becareful.!!!! Well just my 2 cents..
ninacastillo
on 3/6/12 3:14 pm - CA
I feel for you and everyone else suffering with RA. I was diagnosed at 28. I had a healthy 2 yr old at the time and I was devasted. I was able to endure the pain and changing treatments for years. I have three more children. Pregnancy and hormones always made the pain disappear. I enjoyed many months during the past 20 years in remission. I am on Methotrexate and Prednisone and it works most of the time. I'm 8 wks post-op (RNY 1-11-12) and dropped almost 50 lbs. I can only hope that the symptoms will diminish with continued weight loss. I never wanted to become a burden to my children...but more importantly I don't want to be a BIG, FAT, IMPOSSIBLE to LIFT burden to my family as I get older. I try to accept the bad days with this simple thought..."so many people in this world have so much more pain and suffering to deal with than myself". God Bless you!
Hill_Star
on 3/7/12 12:56 am
 I'm 27 and I think what hurt me most is having the drs say no way should u ever have anymore children. It's like driving a knife in my back. I have one child who is fixing to turn six and just can't imagine him growing up as an only child. My RA dr told me that RA can do funny things during pregnancy and I'm hoping that it will not affect how healthy my pregnancy will go once I am pregnant. U say that the meds u r on work sometimes :/ but for the most part it does work right? I'm on plaqunil and it works but it don't lol what I should say it doesn't do everything , but if I wasn't taking it it would be hopeless. Have u or anyone else found nything at home that works and relieves some of the inflammation and stiffness? Such as: I find heat really helps with the stiffness and that depends on how much bacon u eat... Can really make it worst. I ate about 6 pieces of bacon witha pie e of tomatoe and by that evening it was horrible! Since then I've not ate bacon and haven't had such a bad spell since that. Sometimes I wonder if that's just something I think caused it or just a bad day for me. Thanks so much for replying everyone. Nice to know that there's some young people that's going thru the same thing even though some are worst than other. God bless each and everyone of y'all and good luck on the weight loss journey!!
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