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Magnate
Member Since Jul 2013
Location: hippocampus
Posts: 2,379
11 962 hugs
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Oct 30, 2013 at 09:51 AM
#1
I am beginning to become really frustrated. I have AOSD, and my doctors took me off of prednisone after an emergency surgery and other things. I am now back on 20mgs a day and I have to lower the dosage every week to see how my symptoms manage. To get a "final" diagnoses. And I know my doctor is doing her job. But god, this is getting so god damn exhausting.
I began work and I come home every night in horrid pain. Pain that makes me cry (I never cry from pain) and dry heave. It's horrid. And don't even get me started on the daily fevers. I asked her about work, should I leave and get disability, she said to wait and see. Problem is I work where there are loads of customers and now I am on an immune suppressant. I am just at the end of my rope here. There are only so many vials of blood I can give, so many stays in the ER and hospital, and so many days of feeling useless that I can take. I just want a treatment that WORKS. __________________ “You are so brave and quiet I forget you are suffering.”. |
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Jimi the rat
Member Since Dec 2008
Location: Northern Europe
Posts: 6,295
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Oct 30, 2013 at 10:46 AM
#2
Did the pred work before? There are several immunosupressants out there, you're quite early on in treatment, they should be able to add something if this is not enough. Adding to pred with this stuff is not uncommon.
Do you get pain killers? I hope you do. That stuff's painful! (I know you already know this already....... but some docs undertreat pain.) I do hope you will be better very soon. __________________ 
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Magnate
Member Since Jul 2013
Location: hippocampus
Posts: 2,379
11 962 hugs
given |
Oct 30, 2013 at 11:28 AM
#3
I'm honestly not sure if it worked before because It was probably four days I was on it because they yanked me off of it (doctors in the hospital told my parents, without my consent mind I am 23, how dangerous it is and how there are "other treatments" yet, with their infinite wisdom, they didn't even know what Adult Onset Still's Disease is) so I didn't get to start it up again. Until now.
Yeah, no pain meds. And I don't think she'll ever give them to me to be completely honest. I think a lot of people (meaning my family, my doctors) are underestimating how much this hurts and how that pain impacts everything I do. I can't even go for walks anymore, something I did daily. Instead, when I am not working, I lay in bed and hope the pain just goes away. Thank you, jimi. You're always so kind. __________________ “You are so brave and quiet I forget you are suffering.”. |
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Legendary Wise Elder
Community Liaison
Member Since Apr 2013
Location: Texas
Posts: 26,619
(SuperPoster!)
11 10.4k hugs
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Oct 30, 2013 at 11:42 AM
#4
I hope the steriods work for you. I hate to hear how much pain you are in. I think doctors have gotten a little overly concerned about giving out pain medication. I don't think you should have to suffer. I know that everyone these days are worrried about addictions, but there has to be a point to where quality of life should mean something. Wishing you the best. Hang in there.
__________________ Bipolar I, Depression, GAD Meds: Zoloft, Zyprexa, Ritalin "Each morning we are born again. What we do today is what matters most." -Buddha  |
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 Grey Matter
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