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Newly Diagnosed #280666
06/28/18 03:14 PM
06/28/18 03:14 PM
Joined: Jun 2018
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Anne64 Offline OP
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Anne64  Offline OP
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Good morning, I was diagnosed in May 2018 with Undifferentiated Spondylitis and then told possibly Ankylosing Spondylitis. I did two injections of Humira, I had severe side effects so they discontinued the Humira. I seen a different rheumatologist and he said I reviewed the drugs for AS and " they are symptom relievers and don't prevent fusion or joint damage." He told me to continue my starch free diet and come back in 2 months. The other doctor in the office then mentioned that he wants to start me on Enbrel. My question is, has anyone adhered to a starch free diet and taken Turmeric/Curcumin for inflammation or any other natural items instead of taking biologics? I am so confused by everything I have read and continue to read. Have a great day! Thank you in advance, Anne

Re: Newly Diagnosed [Re: Anne64] #280667
06/28/18 05:06 PM
06/28/18 05:06 PM
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Winston Offline
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Many AS sufferers follow the starch-free diet (or other diets) and find that it helps their symptoms. Many other AS sufferers have found that special diets do not help their symptoms at all. Most people, I think, find that some combination of medication, diet and exercise works best to alleviate their symptoms. You just have to find what works for you. Note that there is indeed evidence -- good evidence -- that NSAIDs and biologics slow disease progression. So the opinion of that second doctor you saw is either, well, questionable at best. Be careful with supplements, as they often don't contain the ingredients they say they do and often contain other ingredients that are harmful. Beware of quackery, in general, on the internet. There's lots of it out there. This website -- the SAA website -- is a great source of reliable information.

Last edited by Winston; 06/28/18 05:47 PM. Reason: accuracy
Re: Newly Diagnosed [Re: Anne64] #280673
06/28/18 10:03 PM
06/28/18 10:03 PM
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SouthernMoss Offline
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Originally Posted by Anne64
I seen a different rheumatologist and he said I reviewed the drugs for AS and " they are symptom relievers and don't prevent fusion or joint damage."


Do you know which drugs the different rheumatologist was referring to? If he was talking about narcotics, then he is correct that they are just symptom relievers.

But if he is talking about NSAIDs and biologics, then he is dead wrong. NSAIDs and biologics reduce inflammation, which is critical to treating AS. They are definitely not just symptom relievers.

I would encourage you to consider giving Enbrel a try. The mechanism of each biologic is different, so you won't necessarily have a reaction to Enbrel just because you did with Humira.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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: Newly Diagnosed [Re: Anne64] #280695
07/02/18 07:48 PM
07/02/18 07:48 PM
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miaoli Offline
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I haven't yet tried biologics so I can't chime in on those (insurance reasons) but I did try tumeric/curcumin and for me it didn't work but that doesn't mean it won't for you. A lot of people swear by it, and there is some research to back it, not a lot but some(its been a while since I looked into it, but I believe some studies have found it does indeed lower inflammation).


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Newly Diagnosed [Re: Anne64] #280703
07/05/18 05:01 PM
07/05/18 05:01 PM
Joined: Nov 2007
Posts: 459
St George, UT
Britefutr Offline
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Researchers continue to identify subtypes of AS, in which patients experience certain groups of symptoms and react differently to some medications; so don’t give up trying things. Different people react differently just as the other posters have told you. The anti-TNF drugs were life-changing for me. My disease still progressed over the next two decades and I’m now disabled, but even now I don’t think I could cope without the anti-TNFs. Good luck on your journey stay on the website you’ll find so much great information


Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...

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