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General Message Board for Ankylosing Spondylitis and Related Diseases
07/20/18 06:29 PM
Thanks for sharing your experience, Awnie1301. We sound kind of similar. Was your achilles all swollen, or just painful? Mine was painful for quite some time (over a year) about 10 years ago, but I didn't notice any swelling then and never saw a doctor. About 14 months ago it became painful again and swelled up. That's what finally go time checked for spondylitis.

I have a son with peripheral spondylitis (swollen knee) who is on MTX. He had some difficulty with it at first, but after some adjustments and a LOT of folic acid he is doing well. I am not looking forward to trying it, but it is probably the next move, since I appear to be a 'primary non-responder' to Enbrel frown
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/20/18 06:26 PM
Yes, I have one of the more serious AS-related heart conditions. (Note there are quite a few prior threads on the topic, so you might do a search for those. You'll find that I repeat myself a lot.) In general, AS-related heart issues fall into one of three categories: (1) conduction abnormalities, (2) problems with the aortic valve, specifically aortic regurgitation, or (3) damage to the aorta. All the issues stem from inflammation in the heart near the aortic root. My understanding is that the tissue in that area of the heart shares many characteristics with enthesis, which is the primary tissue targeted by the immune system in AS and related diseases.

The issues can be quite serious if left untreated. Conduction abnormalities can lead to dangerous arrythmias, heart block, etc. Aortic regurgitation will, over time, lead to heart failure. Inflammation in the aorta can lead to aortic stenosis or aneurysms of the aortic root and/or ascending aorta. I have the latter problem (dilation of the aortic root/ascending aorta). The good news is that all of these conditions can be treated and/or surgically repaired. In the short term, having one of these problems usually just means more monitoring. I, for example, see a cardiologist once a year, have an EKG once a year, and have a chest scan of some sort once a year. Right now I alternate between an MRA (magnetic resonance angiogram) and an echocardiagram (MRA one year, echo the next, MRA the next, etc.). I don't take any medication for the heart condition other than what I already take for my AS. I am encouraged to exercise as much as I can. I do operate under some relatively trivial (to me) restrictions: no powerlifting, no kickboxing, no rollercoaster riding as a hobby, etc.

It's good that you went to urgent care, and it's good that your rheumatologist is savvy enough to recognize that you need additional testing and monitoring. Did you see a cardiologist, or did your rheumatologist or GP order the EKG and echo? (EKG results are immediate, by the way, so I don't know why you would be waiting on those, unless your EKG was via Holter monitor? If your rheumy ordered it, maybe he/she has sent it to a cardiologist for reading?) If you haven't seen a cardiologist, you should see one, regardless of the test results. I believe heart conditions in AS patients to be under-treated/under-diagnosed because many doctors, including rheumatologists and cardiologists, aren't familiar enough with the literature linking AS to heart issues. There's plenty of research out there making the connection.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/20/18 04:23 PM
Good for you. I'm glad it worked, and so fast. Note that some people get immediate relief and then their symptoms rebound a bit. Don't panic if that happens. Give it time.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/19/18 01:50 AM
I cry to sleep in pain now and things are getting worse. I went from being active to null. I'm really having hard time and my doctors aren't doing anything about my pain.

Mobic helped but that drug caused side effects don't know what to do
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/18/18 08:45 PM
Low back pain when I wake up.
Left Hip/SI pain.
Heel pain (PF).
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