NEW Dx of AS....Wondering What to Expect

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I am a 55 yo female.  My AS started in the top of my hand, a few months later my heel became affected.  March 2018 I had an elevated ANA and was referred to a rheumatologist.  Since my AS diagnosis two months ago I feel as though I've aged 20 years.  Since that time my knees are horrible, my right shoulder is painful, the tops of my feet hurt and my right hip and back hurt.  I walk like a 90 year old.  I'm on my third anti-inflammatory.  Last Friday I started on Enbrel injections.  

My question for you all is...

Can I expect to feel better some day?  I've heard a lot about bone fusing.  Is this something I will have to deal with in the future?  I've read that Enbrel (and like drugs) hopes to SLOW the disease.  I asked my doctor and she said that the hope is to stop the disease.  What do you all, actual patients find is the truth?

I am the cool grandma and I want to stay that way!  : )

Any help would be appreciated!

 

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  • Posted

    Diana, will get better. But can go bad in time. My AS started 35 years ago. The only drug was Remicade. Worked for 6 yrs. Tried Enbrel, didn't work. Went to Humira and it work for 3 yrs. Got Melanoma, possible side effect. Now on Cosentyx. My AS has remained in Sacral Joints. Left partially fused on left. Do have Osteoarthritis in back and neck. When said can go bad I've now got three other Immune diseases. AS and RF can attack organs. Currently, got lung issue being analyzed. U can only play cards dealt to you. Recommend keep health issues dealt with one at a time. Try not be overwhelmed. Everybody is different. Posture and diet are biggies with AS. Best

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    • Posted

      Thanks Garyjm for your response.  There seems to be a lot of "take it as it comes" with this disease.  

      Although I was just recently diagnosed in hind site I've been struggling for years.  I've been seen by doctors for individual problems and not treated as a whole.

      Since that post I've been back to my doctor and she says that I have traits from ankylosing spondylitis and spondyloarthritis.  I guess I'm not the norm.  I didn't feel like I was fitting in on the board and that explains it I guess.

      I've now had two doses of Enbrel and have a bit of relief in my knees but worsening issues in other areas.  

      Thanks for your tip regarding diet and posture.  Posture I'll watch and improve....Diet I suck at but will be trying to get better.

      I hope your lung issues were a false alarm!  Best of luck to you

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  • Posted

    Hi when you diangnosed with AS ? and if it is the reumatologist no recommend anything? I have same since 24 years of age I am now 61 I use ENBREL 50 every two weeks or more plus some Celebrex plus some sulphazaline direct release 500 amd is under control some remedial Massage and some good treatment I also use B12 injection every 4 months boosts the Red cells , there is no cure of that ask your reumatologist to do blood test CRP CRS this are markers if you have inflammation, MRI MAY show AS no entirely correct , it is blood disorder originated from a gene Call it HLAB27 WIth INFLAMMATION, plus the ageing process , possible run in family wish you well 
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    • Posted

      AS Diagnosis 2 months ago.  On Enbrel and Sulphazaline 2,000mg day.  Don't have the HLAB27 gene.

      Thanks for your info and suggestions.

       

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  • Posted

    AS is disease for young people, usually starts between 15 to 25.

    once pain starts, inflammation appears in mri, after 8 years in xray and fusion takes years, it never happens in months. are you sure you got AS????? what mri, esr, crp says?

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    • Posted

      X-Ray shows a lot of inflammation in the SI joints.  Haven't had a full body MRI, CRP, ERS were negative.  MRI of hand shows pocket of inflammation.  X-Ray of left heel shows Ethetetis.  Negative for HLA B27 Gene.

      My Rheumatologist feels I have traits from both anylosing spondyolitis and spondyloarthritis.

      Am considering second opinion.

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  • Posted

    X-Ray shows a lot of inflammation in the SI joints.  Haven't had a full body MRI, CRP, ERS were negative.  MRI of hand shows pocket of inflammation.  X-Ray of left heel shows Ethetetis.  Negative for HLA B27 Gene.

    My Rheumatologist feels I have traits from both anylosing spondyolitis and spondyloarthritis.

    Am considering second opinion.

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  • Posted

    Hi Diane,

    I tried replying to your question a week ago, but the moderator keeps deleting my posts. My only intention here is to provide AS sufferers valuable insight into how I put my disease into remission. I took all the NSAIDS, which helped manage stiffness and pain, but ended up wiping out 70% of my kidney function. It also caused me leaky gut syndrome, where the intestines started bleeding and dumped undigested foods and toxins into my bloodstream. I was also on Enbril, which controlled the progression of my disease, but the immunosupressant effects also gave my all kinds of weird symptoms like skin tags. Ultimately I started viewing my AS as a symptom of a much larger problem going on system wide, and began controlling my diet by eliminating every kind of food that has known inflammatory effects (gluten, starch, high sugar foods, acidic foods, dairy, processed oils and any kind of prepared foods like in restaurants). I also stayed with whole foods, a good portion of them raw, and stuck to foods that were also low in lectin (big brother to gluten, but are difficult to completely eliminate). That left me with a typical daily diet composed of sweet potatoes, yams, fatty fish, organic veggies/fruits/meats), limited nuts (mostly almonds, walnuts and macadamias), and organic berries. But just getting off the processed/starchy/sugary foods had an immediate effect on me. I suffered AS for 25 years, was bed ridden for a full year, with all of my lower vertebra fused together. I stayed on my meds, and tapered them off as my pain and stiffness subsides, and now have been medicine free for a full 8 years. I am 54 years young, and skateboard every day. As my AS subsided, I then began work with a holistic doctor who specialized in functional medicine. He fine tuned my diet to heal my guy, monitored my blood work, and gave me supplements to balance out any organs that were over/under active. As AS is an inflammatory disease, he got my immune system stabilized, activated my low thyroid (involved in tissue generation), and slowed down my adrenal glans (kicks out too much cortisol to suppress the inflammation). I hope this post makes it to you, as you are clearly looking for answers. I also wish you a world of luck and health. 

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    • Posted

      Thank you for trying again.  I'd been wondering what your deleted posted had said.

      I have to admit that this possibility of taking control of AS via diet is freaking me out.  I realize there is no better answer then diet vs. tons of powerful medications.  

      For the the past 25 years I've struggled greatly with depression and anxiety and am an emotional eater.  I am currently at my all time highest weight of 238lbs.  If I'm being completely honest....It has already crossed my mind that the two (AS and poor eating) are related in some way.  Self control is not my strong suit.

      Thank you for sharing your story.  I will begin steps into a better diet way of life as I continue to figure out what is truly attacking my body.

      Continued Good Luck on Your Journey

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  • Posted

    Hi Diana I am sorry you are going through all that. I was just diagnosed last week and the pain is horrible. I am 48 and every joint in my body hurts. I am on Celebrex and it feels like I have the flu without having the flu. It is accompanied by sore throat and pain in my ears. Since your post what has worked for you and what hasn't. I am a little freaked out and hoping for some insight too. Hope you are having a good pain day. 

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    • Posted

      Sorry to hear about your diagnosis.  

      For me...Nothing has worked so far.  I've been on numerous anti-inflammatories and am now on Enbrel.  I've had three weekly injections.  I've been told it can take a month to have any relief.

      I hope you find something that helps your symptoms soon...

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