Ankylosing Spondylitis

[Nancym]

I just got diagnosed with this from my Rheumy. Anyone else have this? I'm 47. Seems a little weird to be getting diagnosed with this at my age. I suppose I could have had it for years and years, since I have been suffering from mysterious joint/tendon pains for quite a long time.

[trents]

What is it?

[Nancym]

Ankylosing spondylitis is one of many forms of inflammatory arthritis, the most common of which is rheumatoid arthritis. Ankylosing spondylitis primarily causes inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body:

* Where your tendons and ligaments attach to bones

* Joints between your ribs and spine

* Your hips, shoulders, knees and feet joints

* Your eyes

As the condition worsens and the inflammation persists, new bone forms as a part of the healing process. Your vertebrae begin to grow together, forming vertical bony outgrowths (syndesmophytes) and becoming stiff and inflexible. Fusion can also stiffen your rib cage, restricting lung capacity and function.

Ankylosing spondylitis is a chronic condition. Also called spondylitis or rheumatoid spondylitis, ankylosing spondylitis affects about 129 of every 100,000 people in the United States. Treatments can decrease your pain and lessen your symptoms. Effective treatment may also help prevent complications and physical deformities.

[Guest jhmom]

Hi Nancy, my rheumy checked me for this because of the terrible lower back pain I have, the test came back negative and it confirmed her suspicions that I have Lupus. I know AS can be very painful, does your doctor have you on a treatment plan?

[Nancym]

Hi Nancy, my rheumy checked me for this because of the terrible lower back pain I have, the test came back negative and it confirmed her suspicions that I have Lupus. I know AS can be very painful, does your doctor have you on a treatment plan?

There are people who don't test positive for the HLA B27 and still have it. I guess they diagnose from symptoms and xrays. I was very surprised with the AS diagnosis. I figured I had lupus.

Yes! He started me on sulfasalazine. Surprisingly he said that AS is linked to "leaky gut", something I thought mainstream doctors wouldn't ever acknowledge exists. He said he has a lot of celiac/AS patients. So he said this drug will help with the intestinal permeability and keep bacteria from slipping outside the gut walls. And it should help with the pain. Only bad part is, it takes 1-3 months for it to kick in.

The AS patient groups also recommend a low starch (or no-starch) diet to control the gut bacteria they believe might be responsible for the disease, which I was already following SCD which is similar.

How about you, are you on a treatment plan?

[nikki-uk]

My husband was dx with psoriatic Arthritis 4 yrs before the coeliac.

He was neg to rheumatoid factor.

He has been suffering from back pain so rheumy sent him for spinal x-rays and a dexa scan.

Doc thinks it's either AS or Osteoporosis.

Unfortunately hubbie couldn't tolerate the Sulphasalazine (vomiting)

He also couldn't tolerate Methotrexate (nausea and weight loss)

He has an appt next week with the rheumy,so we should get scan results,and to also discuss the possibilities of starting him on Anti-TNF's.

Hopefully he'll be able to tolerate these drugs.

Hope you get on alright with the Sulph

[Nancym]

He has an appt next week with the rheumy,so we should get scan results,and to also discuss the possibilities of starting him on Anti-TNF's.

Hopefully he'll be able to tolerate these drugs.

Hope you get on alright with the Sulph

I took my first dose of Sulfa last night and other than feeling a bit sleepy, I was fine. You might want to guide your husband to www.kickas.org if he hasn't found it yet. Good support there. It sounds like people on the anti-TNF's are doing very well. I wish your husband and you luck!

[Ann1231]

Nikki, did your husband take folic acid with the methotrexate? My first three weeks I had severe nausea, dizziness, vertigo, extreme fatigue so the dr. had me take 3 folic acid and that helped a great deal. Now I am doing really well except I still get fatigued but that could very well be the RA. I've been on mtx. since October now.

Ann

[nikki-uk]

Hi Ann,yes my husband took folic acid except on the day he took the mtx.

Didn't make any difference-terrible nausea.He stuck it for a month but was losing so much weight(he didn't have any to lose as the celiac disease had left him seriously underweight)that he had to stop.

Good to know it's giving you some relief

[tiredofdoctors]

Ankylosing spondylitis is also known as "bamboo spine", because the spine eventually fuses and has the appearance of bamboo rather than separate vertebrae. It is in the category of "spondyloarthropathies". I agree that the folic acid with the Methotrexate DEFINITELY decreases the nausea, etc. Unfortunately, it can start at any age -- all it takes is the correct "trigger" -- maybe even a virus that you caught that set your immune system reeling. It seems as though everything has to be lined up at the totally wrong time, all together in the "cosmos", and BANG -- you develop another autoimmune disease. I'm sorry that you've started with this. I would recommend a really good manual physical therapist who knows how to do rib mobilizations, including "caudal" mobilizations (I would ask them specifically), so that you will be able to keep your rib cage moving well through the years (they can also teach you how to do this yourself). Also, this can affect your sacroiliac joint, so I would ask them if they had experience with that and if they use manual therapy to correct it. (Make sure you find a PT who puts their hands on you -- not one that just has some kid oversee you doing exercises that you could do in the gym by yourself)

[Nancym]

Lynne, sounds like you know about this disease! Do you know if I should be taking folic acid with sulfasalazine? I noticed I'm getting a couple of side-effects, bruising and light dizziness.

[happy4dolphins]

Great! Glad you brought up the topic. First, I began a celiac diet the day before THANKSGIVING in 2005. What I notice is that the book I have uses lots of startches like potato. So , I am making many things from it.

Also, rheumy did diagnose AS a few weeks ago after a long round of 10 mg prednisone since Feb 24 and I got off about a week ago. SO, she prescribed Plaquenil, but I haven't taken it yet. I'm such a chicken butt when it comes to meds. I just turned 33.

I'll be keeping a close eye on this thread and will type more when the kids are in bed.

Nicole

Maybe I should also quick add other diagnosis

endometriosis 1996

hypothyroid 1999

celiac nov 2005 (by trial and error)

AS March 2006

[Nancym]

Nicole, I really recommend you don't just ignore the AS dx. It really can be crippling and it does oftentimes leave people unable to lead normal lives and gives them terrible pain! Here's a great place to learn more: Open Original Shared Link If I were you I'd jump onto the NSD diet and see if that helps with your pain.

[tiredofdoctors]

I know about the disease because I'm a PT and I have been "questionably diagnosed" with it! I have a lot of fusion in my vertebral bodies, particularly anteriorly, which is really unusual for my age -- 43. I am negative for HLA B-27, thoughy. I know about the folic acid, because I was on Methotrexate for over a year! In fact, I'm going to the rheumy tomorrow and am going to start it again. I have developed Sjogrens, along with a long list of autoimmune stuff, including gluten intolerance (affects my brain vs. my gut), so the rheumy is taking the bull by the horns and putting me on the immunosuppressants. He thinks that, because I was being treated earlier by the methotrexate, it kept everything "at bay" and we weren't able to diagnose all the stuff that was going on. I stopped the methotrexate because this doctor's assistant thinks she went to med school and was such a B**** to me on the phone, after I had already complained to him, that I stopped going to him! Think that was a mistake! She made me SOOOOOOO mad, though. I had just gotten back from the opthmalogist who had diagnosed me with iritis, gave me meds from him, but said to call my rheumy. When I called, they sent me to her extension -- she tells me "you CAN'T have iritis -- in order to have that, you would have to have sarcoidosis, blah blah blah" I told her that she needed to call my opthmalogist that I just saw, because he diagnosed me with iritis, and she had better tell him that he's wrong.

Sorry for the rant, I got off on a tangent! At any rate, I'm sorry I don't know the full answer to your question, but I will ask my rheumy tomorrow. HE is great -- if you can tolerate his ASSistant

[Guest jhmom]

SO, she prescribed Plaquenil, but I haven't taken it yet. I'm such a chicken butt when it comes to meds.

Hi Nicole,

Plaquenil is not a bad medicine however if you have a sensitive GI tract I would suggest talking to your doctor about starting it slowly. I started out taking 1/2 tab every OTHER day and worked my way up to a full dose (2 200mg tabs a day) within a few months and I didn't have any problems at all. It is important to have a baseline opthamology exam as one of the extremely rare side effects from plaquenil affects the eyes. It is very rare and with normal eye exams by an opthamologist not optometrist the side effect would show up before any damage occurs. I hope this helps

According to The Lupus Book by Daniel Wallace, anti-malarials do several things.

They block UV light from damaging skin, have an anti-inflammatory effect like NSAIDS, lower cholesterol levels, inhibit clotting, block cytokines which promote inflammation, and MOST importantly alter the acid-base balance of the cells. This limits the cells ability to process antigens and in that process limits the production of unnecessary anti-bodies. The reduction of unnecessary anti-bodies will slow down the progression of lupus.

Plaquenil does not lower blood counts or make you more susceptible to infection. It is mild by nature and has the fewest side-effects of all the meds prescribed for the treatment of lupus.