HLA B27, MRI and Ankylosing Spondylitis

Posted , 3 users are following.

My Son had a recent MRI and no-one has explained the findings with us, as yet - We're mainly going off a brief report written by a Rheumatologist. If anyone could help with the following, I'd be extremely grateful:

"Some changes in lower part of Sacroiliac Joint on both sides, but this is within the bone itself"

"X-ray Dr has reviewed and said she felt this was *Possibly* a normal variant seen in growing adolescents and not due to Sacroiliitis or inflammation" - They have referred to an extended scope practitioner Physio.

Bit of background info:

- Had pains since just before turning 14 (now 2 years on)

- Been using pain relief daily - Ibuprofen & Paracetamol

- Pain started in the knees (was diagnosed as osgood schlatter disease) but spread

- Usual stiffness/limited movement in the morning

- Pain worse when inactive for a lengthy period of time. Movement helps.

- Strong family history of AS (Dad & Brothers)

- HLA B27 Positive

Can anyone help with how to approach this with the Rheumatologist?

Would the early stages of the disease show up on an MRI anyway?

 

0 likes, 3 replies

3 Replies

  • Posted

    Hi LOL,

    So sorry to hear about your son. In males, AS usually starts in the lower vertebra and works it's way up, but can affect any joint in the body, starting at the enthesis where tendons attach to the bone. Inflammation, stiffness and pain precede fusion, where the joint between two bones fuses over. There is no clear demarcation of whether someone has AS or not. AS is usually a slow, lethargic disease, and is usually diagnosed after 10 or so years of pain and stiffness when the vertebra clearly begin to fuse over. Fret not, as diet and meds can be very effective in controlling the disease.

    If the disease progresses, anti-inflammatory meds give was to Disease-Modifying Anti-Rheumatic drugs like Remicade and Enbrel, most of which basically act by suppressing the immune system. Enbrel was effective in slowing the progression of my AS, but it's effects were limited, and I did not like the idea of indefinitely suppressing my immune system, which leaves you wide open to diseases like cancer. I did the legwork and started understanding the connection of diet and food, which allowed me to wean myself off all meds. I am in full remission, and have been off all meds for the past 7 years. At low tide, I was bed-ridden for a full year with the lower half of my vertebra all fused together. Now I skateboard every day (at age 53!). Trick is it get of SAD, the standard American diet. If you can't eat it in it's raw form, it isn't food. Fake fool like wheat (flour), barley and rye cannot be consumed without grinding it down and cooking it, but still leaves indigestible proteins that the body develops an allergic reaction to (gluten). While this is not known to absolutely be the cause of arthritis, more and more research is connecting gluten to all autoimmune diseases. Cutting out all grains and sugary foods absolutely did the trick in getting my disease into remission, and you cannot cheat, at least not right away. Research has demonstrated that one snack on a gluten food equates to six months worth of food sensitivity. I got obsessive about restricting any kind of starch from my diet for 12 full months, even down to not taking aspirin because of the starch binding agent they use to hold the pill together. That's the kind of commitment it took for me to regain my health. I continue to lead a gluten-free life, with lots of natural fats, veggies, low sugar fruits, organic and wild caught meats and fishes, and some medium starches like refried beans. I truly hope this helps your son, and please feel free to drop me a line if you want talk more (not sure what the policy here is about providing contact info). Bobbie

  • Posted

    The stiffness lasting all day is their key but if he’s young may make a difference... my Rheum goes by my HS-CRP that seems best to reflect my symptoms and went up a lot as the Humira stopped working. The target for Enbrel and Humira is tnf so they switched me to Taltz, and I’m still needing Tylenol/Motrin on bad days..that being said whatever Dad and bro take ahold work for him..good luck!
  • Posted

    Thanks both for the time you've taken to reply.

    Please accept my huge apologies. I locked myself out somehow (I'm really not good with technology) and I needed help to get back in.

    BobbiDi123, that is really interesting reading, and very good to hear you're in remission - I especially love the skateboarding daily! - and I will absolutely look into that. It's not straight forward regarding diet, as my son has autism and a couple of food allergies, so I will speak to his dietician and take their advice.

    donn1952 - Can I ask what you mean by this "The stiffness lasting all day is their key but if he’s young may make a difference"? (sorry if I sound daft)

     

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