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Definitely AS #280795
07/17/18 08:52 PM
07/17/18 08:52 PM
Joined: Jul 2018
Posts: 5
Oklahoma, USA
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Winnebago Offline OP
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Winnebago  Offline OP
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Joined: Jul 2018
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Oklahoma, USA
Went to rheumatologist today for diagnosis and treatment. Definitely AS. Can't say thanks enough to everyone who gave advice. It really helped.

Right now we are doing the 3 drug cocktail with folic acid supplementation. Methotrexate, sulfasalazine, and Plaquenil. Dr. Carson wants to see if this helps before starting a biologic. Insurance usually won't approve unless we try the other 3.

I'm pretty far along in the progression of the disorder. My hands have started to become affected along with entire spine and neck. The damage is done and nothing will fix it. Right now we can try to slow the progression so I can still have some normal function and a chance at a more normal life.

For those in Oklahoma, I highly recommend Oklahoma Arthritis Center in Edmond. This is the place to go for inflammatory auto-immune diseases. Lupus, AS, arthritis, rheumatoid arthritis. It's all well treated there.

Again, thanks to all for the help. Now to figure out how to live life with AS.

Peace

Re: Definitely AS [Re: Winnebago] #280796
07/17/18 09:00 PM
07/17/18 09:00 PM
Joined: Mar 2013
Posts: 2,139
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SouthernMoss Offline
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SouthernMoss  Offline
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Joined: Mar 2013
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I'm sorry that it did turn out to be AS, but glad you finally have a diagnosis and a game plan. Keep us posted on your progress.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Definitely AS [Re: Winnebago] #280811
07/20/18 08:23 PM
07/20/18 08:23 PM
Joined: Jun 2018
Posts: 7
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djShel Offline
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Hi - I'm in a very similar position as you...about to start the same treatment with the three medications you mention before being considered for a biologic...I did not get much information about taking these drugs from my doctor and have relied on some helpful feedback in this forum for guidance. I'd be really interested to hear how and when your medication is to be started (all simultaneously) and how you were advised to begin the treatment (if you are willing to share). Thanks, wishing you the best for this process.

Re: Definitely AS [Re: Winnebago] #280828
07/22/18 04:44 AM
07/22/18 04:44 AM
Joined: Jul 2011
Posts: 227
Oklahoma USA
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rumble Offline
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Posts: 227
Oklahoma USA
I've heard good things about that clinic. Glad you are going there. (I sort of wish there was something like that here in Tulsa, covered by my insurance, but my doc is helping me at this point, so I'll be okay for now.) Good luck with the treatments. Better to find relief with the cheaper stuff for a few years. Your pocketbook with be happier, as will your insurance. smile


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Definitely AS [Re: Winnebago] #280829
07/22/18 12:46 PM
07/22/18 12:46 PM
Joined: Jul 2006
Posts: 6,635
New York
Banana Offline
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Banana  Offline
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Posts: 6,635
New York
Sorry, but glad you are finally getting treatment. All three can take 2/3 months to start working, so I hope it goes quickly for you.

About your hands!!!!!! Please ask for an educational script to see a hand therapist. You can accidently do more damage because we just don't know. AND "helpful" friends might offer advise that causes additional damage too. Example, several different friends kept telling me to squeeze a small ball. That CAUSES damage. My hand therapist taught me to never wring anything out (esp wash cloth is shower because your hands are warm), never carry sacks/bags with your fingers but have them on your wrist or elbow. They also teach you exercises. My hands are damaged and it is extremely frustrating and expensive. I drop glasses (with liquid in them) on myself. Because balance is off, both stove door and frig door broke off with 2 years of buy them. Same with car ignitions.

Good luck, glad you are getting treatment. Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Definitely AS [Re: Winnebago] #282137
11/26/18 06:49 PM
11/26/18 06:49 PM
Joined: Jun 2012
Posts: 596
Los Angeles, CA
RAHMBA Offline
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RAHMBA  Offline
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Posts: 596
Los Angeles, CA
It's been several months since you started that treatment plan. I'm curious if it's effective for you. Hope you are doing well. thank you,


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Definitely AS [Re: Winnebago] #282139
11/26/18 09:42 PM
11/26/18 09:42 PM
Joined: Nov 2018
Posts: 6
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Jg19446 Offline
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Joined: Nov 2018
Posts: 6
PA
Glad you finally got an official DX. I'm sure it and having a game plan is a bit of relief


JG xx
Re: Definitely AS [Re: Winnebago] #283125
05/23/19 08:33 PM
05/23/19 08:33 PM
Joined: May 2019
Posts: 15
Los Angeles, CA, USA
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PainintheAS Offline
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Los Angeles, CA, USA
I am truly sorry for how far you've progressed down this disease. The biologic/anti-inflammatory workaround for this disease is definitely something that looks like it helps, but hurts you further in the long run. AS is functional disease of the immune system and the microbiota (intestinal bacteria.) When we take anti-inflammatory medications, we actually further damage the intestinal lining. This is why people who have been on NSAID's long-term often develop ulcers and other intestinal issues. This disease will not slow down unless the root problem is addressed, which is both periodontal and gastrointestinal. Certain mouth bacteria can leak into the bloodstream and cause AS progression, and if you're HLA-B27+, then you will be predisposed, and ultimately develop, intestinal inflammation no matter what you do. In both of these cases, upregulation of cytokines mediated by interleukins (which interleukins get upregulated by gut bacteria interactions) will cause the disease to continually progress. Please check my post for more info and I hope you will get well and get off those meds. Link


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