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Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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OP
Major_AS_Kicker
Joined: Oct 2006
Posts: 2,001 |
Hello fellow ASkickers!
I was active on this forum several years ago, but have been away for a while. I've had a busy few years with a move to a new city, new house, new job and, best of all, two new grandchildren!
I started seeing a new rheumy about a year ago and have spent the last year and a half tinkering with meds to see what might help me. At the first appointment, the rheumy told me that my symptoms were not typical, but he was willing to experiment and see what would help me.
I tried sulfasalazine, but the longer I took it, the more tired and dull I felt and it didn't help my joint issues at all. Next, we tried Cymbalta which helped my mood and sleep, but still didn't touch my pain. The third medication was methotrexate which caused me to slowly feel a somewhat better, though I still didn't have a definitive diagnosis.
After six months on methotrexate, we added Humira and I'm seeing amazing changes on the Humira. At the last appointment, when I asked the rheumy to what extent a response to Humira is indicative of an autoimmune, inflammatory condition, he told me it's diagnostic. He believes I have seronegative spondyloarthropathy, though I have some symptom overlap with rheumatoid arthritis. I seem to fall into one of those gray zones where I definitely have an autoimmune, inflammatory condition, but don't fit into any neat categories.
Anyway, after more than ten years of symptoms, it's marvelous to finally have a diagnosis and a treatment that is actually helping me. It's been a long and difficult road up to this point. I've had rheumies shout at me and have been told my main problem was fear-avoidance issues and I needed counseling. I've had times where I could barely function at my job and at home. For the first time in a long time, I feel some hope.
I remember some of the people on this forum and look forward to hearing from them again.
Karen
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.
Thomas Merton
Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.
Emily Dickinson
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Hi Karen
I remember you!
Nice to see you again!
Are you still teaching?
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Hi!  Good to see you here again. Better yet, so glad you finally got on humira and it is helping so much! 
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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OP
Major_AS_Kicker
Joined: Oct 2006
Posts: 2,001 |
Hi Lon! Good to hear from you. Yes, I'm teaching anatomy and physiology at a nursing college and enjoying it very much.
How are you doing? I see from your recent post that you have grandkids also.
Karen
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.
Thomas Merton
Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.
Emily Dickinson
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Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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OP
Major_AS_Kicker
Joined: Oct 2006
Posts: 2,001 |
Hi Sue,
It's good to hear from you. Hope all is well with you.
Karen
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.
Thomas Merton
Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.
Emily Dickinson
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Joined: Nov 2001
Posts: 18,186 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,186 Likes: 7 |
Karen!! It's so good to see you. I was wondering about you just the other day. I am soooooo glad to know that someone is finally helping you.
I'm not around much these days, but try to get here at least once a week. Hopefully, you'll pop in more, too?
Love and warm hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Jul 2013
Posts: 378
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Jul 2013
Posts: 378 |
Hi Karen,
Have you experienced any side effects from the humira? Do you follow a starch free diet? Thanks!
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Joined: Jan 2009
Posts: 4,501 Likes: 1
Supreme_AS_Kicker
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Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501 Likes: 1 |
Good to see you back, Karen. Cool that you are teaching, especially A&P. Woo-hoo. And glad to hear you are getting some relief with Humira, along with an actual diagnosis. Always a good thing to find out it's not all in your head.  Gentle hugs.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Joined: Sep 2013
Posts: 67
Active_Member
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Active_Member
Joined: Sep 2013
Posts: 67 |
It's always great to hear good news! I'm relatively new to the forum (only been here a little over a year), but welcome back 
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Joined: Oct 2006
Posts: 2,001
Major_AS_Kicker
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OP
Major_AS_Kicker
Joined: Oct 2006
Posts: 2,001 |
Hello Kat, rumble, lulu and everydaybattle,
Yes, it is a relief to FINALLY have a diagnosis and treatment that is actually helpful after 10 years of being treated like a crazy person!
I don't have any side effects from the Humira. I've been on it since October. I got a cold over Christmas that turned into a sinus infection and laryngitis and ended up on an antibiotic. I suspect that if I weren't taking Humira I wouldn't have developed the sinus infection and laryngitis, but it's hard to say.
I was on a strict NSD for about 18 months. When I first started it, I seemed to get a bit better, but then I plateaued and when I discontinued the NSD I didn't get worse. I've never been able to come to a firm conclusion regarding my experience with the NSD.
The rheumuy says I have some symptoms that are consistent with rheumatoid arthritis, but my symptoms are more in line with AS and I don't have rheumatoid factor, so he's calling it AS. My symptoms certainly aren't classic AS symptoms, but I'm HLA-B27 positive. I have more peripheral involvement than spinal.
Karen
I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me.
Thomas Merton
Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all.
Emily Dickinson
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