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Hey! New member here #282477
01/20/19 07:12 PM
01/20/19 07:12 PM
Joined: Jan 2013
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jagsfan05 Offline OP
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New member here that was recently diagnosed a few months ago with AS. I'm a 31 year old male...a little more about my story. Long post sorry in advance:

I'm a pretty active male who has always enjoyed running, playing tennis and lifting weights since my teens. I have never had a real injury until 2012 when I was 25 years old, I was playing tennis and I pulled my groin. The pain ended up shifting to my SI joint area so I ended up going to a sports med doctor. He got an MRI of my hip and diagnosed me with SI joint arthritis and piriformis syndrome.The results specifically showed some "bilateral minimal sacroiliac arthritis which may be posttraumatic nature however underlying inflammatory arthritis cannot be excluded. Along with fraying of labral and piriformis issue, etc." He wanted me to go to PT which I did for 6 weeks and also put me on a Medrol Pak. But in addition, the doctor also wanted to check some labs including HLA-B27, ESR, CRP, etc. to rule out something called AS or any other inflammatory disorders. I ended up doing the labs which showed I was HLA-B27 positive but my other labs came back normal. So when these results came back, they called me saying they wanted to refer me to rheumatology for possible AS. Well guess what? I was young and stupid and the PT after 6 weeks healed me! I had never heard much about autoimmune diseases much less AS so I thought I was fine and didn't follow up with rheumatology.

Fast forward to 2018. In between these 6 years I might have had a few flare ups of my SI joints but it always went away on it's own....until that fateful date of May 4, 2018. I was lifting weights doing a deadlift, when I felt a knife like pain in my mid/lower back. I remember barely being able to sit for periods of time and the pain would be mostly throughout my upper butt/low back but I held off going to a sports med doctor until late August 2018 (a different one than 2012). I was hoping whatever it was would heal on it's own. I explained to him about my SI joint problem back in 2012 and the positive test of HLA B27 (mind you still at this point I had no idea the real connection of this test with AS). He didn't get an MRI but instead sent me to PT which I did for 5 weeks. It didn't get better so I went back to him in October 2018. He now decided to get an MRI of my pelvis which showed...guess what? "Mild bilateral iliac-sided marrow edema & small periarticular erosive changes adjacent to SI joints consistent with sacroilitis. The symmetry and bilaterality favor AS, IBS or rheumatoid arthritis. No ankylosis." With these results, he told me he needed to refer me to rheumatology especially with the past history I explained to him in 2012.

Well now I'm married so my wife does a great job making sure I go to rheumatology this time around. I went to my appointment in November 2018 and I explained all this history to her. She said she is almost sure I have something called AS. She checked my flexibility, etc. which seemed to be pretty good and I also explained to her at that time I wasn't in tons of pain but it usually was around the SI joints when it was. She decided to be sure she wanted to check my labs again and also get an X-Ray of my SI joints specifically. She told me she didn't need to retest for HLA-B27 since I tested positive in 2012 but I told her to do it again just for peace of mind. My X-Rays came back that day showing "narrowing and periarticular sclerosis at the SI joints, compatible with seronegative spondyloarthropathy. Given the patient's age, the SI joints show a moderate degree of narrowing. There is no definite ankylosis at this time." My labs for inflammation were all normal except of course I came back HLA-B27 positive again. That's when I got the fateful news from my rheumatologist saying the xrays of my SI joints do confirm findings consistent with an inflammatory process, likely AS along with the positive HLA-B27. She said though I was probably more on the mild-moderate range and my case presentation was very unusual (since I never felt much SI joint pain until that injury, good flexibility, it never wakes me up sleeping, etc.) she still wanted to put me on Enbrel or Humira to prevent joint damage and worsening. She said she was glad I had my 2012 MRI results because she could see a slight progression of the disease based off the results from both. We also decided to go ahead and get X-Rays of my Lumbar & Thoracic spine to make sure the AS hadn't spread. The results came back with no AS but that I had spondylolysis/spondylolisthesis/anterolisthesis of L5/S1 (Grade 1).

So here I am unfortunately. In the past month, my pain has increased significantly which is depressing (only in my low back/SI joint areas though).I started Enbrel almost two weeks ago and trying to keep my head up. My rheumatologist said I can still live an active life while on biologics and that there is no type of exercise to avoid with AS (just listen to my body and use pain as a guide). My wife has been very supportive to me through all this and I'm very thankful for her. I ended up going to a spine doctor as well just to check into my spondylolisthesis and find out what it means. My mom has Grade 3 or something along with DDD, multiple surgeries and hardware in her back. He says mine is probably congenital but I'm not sure because I led an active lifestyle too. He ended up getting another xray of my lumbar spine but this time bending over which showed barely any movement of the vertebrae shifting. He said the sharp knife like pain I felt is probably the spondylolisthesis and it getting flared up but just to maintain core/back strength and surgery isn't needed. So having both problems is definitely depressing. I haven't been back to the gym yet and just recently started trying to run again. The biggest thing I've been left wondering is if my pain is from my AS or my Thesis and having to figure that out going forward...I'm thinking it's probably the AS since it's all throughout the day and usually worsens from inactivity. Also just left wondering why my main AS symptoms only showed up after the deadlift injury? Again I've had them a few times before but these were worse and never went away. I guess it's possible to get AS symptoms after an injury and doesn't have to come up randomly?

Anyways, thanks for listening and sorry for the long post. Just helps being able to share my story!

Last edited by jagsfan05; 01/20/19 07:33 PM.
Re: Hey! New member here [Re: jagsfan05] #282478
01/21/19 12:54 AM
01/21/19 12:54 AM
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BigDaddio Offline
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Hi, and welcome to the forum! Thank you for sharing your story. I'm sorry to hear your pain is increasing, but from what others have said being active can go a long way to feeling better so it's good that you aim to do that.

I suggest reading all you can about AS to educate yourself even further. There are also some great videos on YouTube from SAA as well as other professional organizations. They may help you better understand AS and the various aspects of living with it.

Re: Hey! New member here [Re: jagsfan05] #282479
01/21/19 01:12 AM
01/21/19 01:12 AM
Joined: Jan 2016
Posts: 36
Joshua Tree, CA
jtmak Offline
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Welcome jagsfan05! It might be the inactivity that followed your injury brought on the pain and this condition to view. I too had a very active lifestyle early on upon learning of my AS - and have seen my symptoms flare when sedentary from injury, illness or work. Amazing is that when active, i felt few symptoms. Its not uncommon for the inflammatory labs to be normal with AS. I'll let others respnd to your other questions but encourage you to stay active and maintain strength and endurance - but be kind to your body. Have fun in your movement and it'll give you frredom to move.


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: Hey! New member here [Re: jagsfan05] #282481
01/21/19 02:25 PM
01/21/19 02:25 PM
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Winston Online
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The initial AS flare frequently follows trauma, so I'm not surprised at all that your initial AS symptoms appeared after a sports injury. My initial flare followed a careless fall in the shower at the end of a summer in which I played in a lot of tennis tournaments. Movement is definitely good, but consider switching to more spine-friendly activities/routines, e.g., swimming or the elliptical machine instead of running on hard surfaces, high rep weightlifting instead of heavy lifting. Add some flexibility training of some kind, e.g., yoga, Tai Chi. I had to give up tennis because the constant twisting motion, the sudden start/stop running across the court, and the risk of injury following a fall or slide were disrespectful of my spine. Be smart about it, and think long term.

Re: Hey! New member here [Re: jagsfan05] #282484
01/21/19 03:36 PM
01/21/19 03:36 PM
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Posts: 6,624
New York
Banana Offline
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Welcome, but sorry!!! At least you are a very active person, that will really help!!!

Here is some info. HLA-B27 gene test, never changes!!! It is a test for a gene, you either have it or not. 15% of Spondys do not have that gene, because there are other genes that they are finding out about. There is a lot of research on the various genes, but only the test for this. Having the gene does help you get diagnosed.

I skimmed the ending part, are you getting treatment? Enbrel or Humira? They both were like a miracle for me, until they stopped working. You probably won't have that issue since you are young and diagnosed fairly early in the disease. My disease came and went for years too. I tried various diets and thought each was a cure, until the darn disease came back. I beg of you to start treatment. Early aggressive treatment is the recommended plan instead of gradual step up. They found so much damage happened in the first year that you want to hit it with a baseball bat.

You might want to change your exercise program BUT exercise is soo important, it probably helped you so far. Pretty weight lifting is a no-no except for low weight. You want to not over do it. I had to switch to swimming instead of hiking because my ankles are too damaged but now I love swimming.

Good luck, and welcome


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: Hey! New member here [Re: jagsfan05] #282504
01/25/19 10:39 PM
01/25/19 10:39 PM
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AS8 Offline
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If your doctor wants to put you on a biologic quickly she needs to make your appointments at least 6 to 8 weeks apart or sooner and only write prescriptions for any other medication for you to last until your appointment in order to get your insurance to cover the cost of the biologic.


1986 lower back pain going down leg
1990-1993 iritis attacks in left eye
1993 diagnosed with AS by x-ray (spine squaring, hip damage) & HLA b27 gene
1993-2002 iritis attacks rt eye about every year
2002-2019 meds=2000mg sulfasalazine, 400mg celebrex, 5mg prednisone, no iritis, exercise lift weights and arthritis swim class
2017-2019 yoga twice a week
2019 x-ray spine squaring, L5 fused, spinal stenosis
Re: Hey! New member here [Re: AS8] #282506
01/26/19 03:13 PM
01/26/19 03:13 PM
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Winston Online
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I don't think most insurance plans work that way. My biologic prescriptions are good for one year. And I see my rheumatologist every 3 months.

Re: Hey! New member here [Re: jagsfan05] #282507
01/26/19 06:03 PM
01/26/19 06:03 PM
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SouthernMoss Online
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I think AS8 is referring to the fact that many insurance companies used to require you to fail 3 NSAIDs and one or more DMARDs before they would approve a biologic. By having frequent appointments and only a 6-8 week prescription of each NSAID or DMARD, you could work your way quickly through the "failure" of the meds on your way to a biologic. However, I think insurance companies are quicker to approve biologics now than they used to be.


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: Hey! New member here [Re: jagsfan05] #282508
01/26/19 07:59 PM
01/26/19 07:59 PM
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Winston Online
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Thanks Ginny. That wasn't clear to me. I agree that it's much easier to get a biologic (at least in the US) than it used to be. For axial arthritis, they shouldn't even make you go through the step therapy rigamarole anymore because the medical guidelines don't support it.


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