Friday, June 01, 2012

Wednesday, April 22, 2009 Vickie asks

Q: Living with uncontrolled RA

I am 52 year old female.I was dxed with RA Sept,07. Because I am a complicated case I have been informed by Rheumy there are no options left in controlling RA for me. I will take a small dose of prednisone for awhile. Is anyone else dealing with this issue?

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4/23/09 3:17pm

I was diagnoised with RA in my late 20's (am 60 now). I was put on a low-dose of prednisone for a year. It put me into remission. Stopped taking prednisone and all in all I felt pretty good. I would have a mild flare from time to time but it was managable. About 8 years ago, RA reared it's ugly head with a vengence. I cannot take prednisone because of other health problems and now I have no insurance and don't qualify for any medical assistance so I am not able to get treated. No pain meds or anything. It's not easy. I am now in congestive heart failure due to RA. Not much can be done at this point. All I can say is good luck on trying to manage this disease. I hope you have a good support system around you. That helps.

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4/23/09 8:31am

Hi Vicki. Yes i am in same position. it took Drs a while to figure out what happened to me. I too am compicated case in all my medical history. i tried remicade for colon, now am immune to it. humira, and had bad reaction after 2 mos. i have soo many allergies and compications with the littelest things that the Drs are at a loss. so i requested steroids because i couldnt take anymore. i am also on percocet every 4 hrs, trazadone for nerve pain(spine and rt arm nerve pain extreme) and nerontin. the steroids helped a little but cant sleep and feel awful on them. i have so much pain all the time and shoulder is really bad.  Its unbelivable how much RA can effect your life and all the pain. i am not sure what is next. i have so many other medical problems too, the rheumy doesnt know what else to try. its very frustrating and a little scarey to me.  so i am in  that place also. I will let you know if they come up with something new. colleen

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4/23/09 12:51pm

Hi Vickie.  I am new to this site, and just started posting.  I am in a similar situation, I think.  This is what has helped me:  I have done extensive reading on, and follow an anti-inflammatory diet.  This is not a cure by any means, but it does help.  I take many natural supplements, and have read several really good books about them.  I take an anti-depressant, not because I have depression, but because it really helps with pain.  Lack of sleep, stress, pain all deplete seratonin, which you need to be able to keep fighting.  I also go to a pain clinic, in addition to my rheumatologist.  They can, and will prescribe the medicines that will control your pain.  Rheumatologists usually won't/can't, because of current laws and politics.  But I can't overstate how much it helps.  There are many good books that have been published about living with chronic pain, and many of them explain why we shouldn't fear taking stronger pain meds.  Educating myself on as many topics related to my ailment as I can, has been a huge help to me.  Part of the tragedy of any chronic illness, is the helplessness one feels.  Knowledge is power.  Hang in there Vickie, and don't give up!

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By Vickie— Last Modified: 11/15/10, First Published: 04/22/09