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

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

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 

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?

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.

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. 

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.