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Achilles Update #282567 02/05/19 04:47 AM
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kglenn Offline OP
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My achilles has been swollen and mildly painful (mostly when first using it) for 21 months now. Sacroiliac and hip pain/stiffness still very mild. If you would like the back story, please read here: http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=282176&Searchpage=1&Main=27691&Words=%2Bachilles&Search=true#Post282176

At my appointment a few weeks ago, my rheumy agreed we could stop throwing heavy meds at me as long as I went to see a foot specialist (ortho) about my achilles, as he's concerned about how long it has been inflamed and that I am at risk of rupture. I saw the specialist today who took some x-rays which showed that I have two bone spurs in my heel. When my GP had read my x-ray from 18 months ago, he had told me there was no bone spur, but the orthopedist looked up those images and I definitely had them then as well, though they have grown in the interim. I guess my GP missed it.

The larger of the spurs appears to be growing straight from the enthesis and is sitting smack in the middle of (and apparently partially replacing my) achilles tendon.The ortho says that I will need surgery (which will require detachment/clean up/re-attachment of my tendon with a 3-4 month or longer recovery), but that there is no rush-- I can wait basically as long as I want and that my risk of rupture is still low, despite the spondylitis.

Does this sound reasonable? I am not wanting to have the procedure, but I also don't want to wait and then end up with a ruptured achilles. Also, he aid it wouldn't hurt anything to wait, but also said that if I had lost too much of my achilles, he would need to take tendon from my big toe to replace it. Which seems to be somewhat contradictory.

I have a second opinion scheduled, which I hope will be helpful, but wondered if anyone has had experience with this situation?

Also, correct me if I'm wrong, but enthesitis likely led to to the formation of the bone spurs, yes? The only thing is that I actually has bone spurs removed from both of heels back in high school (roughly 38 years ago). But I had no symptoms of spondylitis back then. All a bit confusing...

Thanks for reading!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx
Re: Achilles Update [Re: kglenn] #282586 02/07/19 06:57 PM
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achala Offline
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11 months here with similar issue at this moment hole in the calcaneus which does not seem to bother my rheumatologist nor orthopedist. I will put my foot in the mud if I find a quality one ☝️


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Achilles Update [Re: kglenn] #282599 02/08/19 08:49 PM
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kglenn Offline OP
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I saw another foot specialist today for a second opinion. He recommends trying physical therapy and has given me a list of therapists who understand a specific protocol that has been shown to be effective. I'm not sure how likely this is to be effective, given the root cause is a systemic inflammatory condition, but I'm willing to give it a shot. the therapy won't, of course, eliminate the bone spurs, but if the inflammation clears up, I don't really care.

Another option he recommends is living in a boot for some time to see if that will help clear it up. Not sure I'm so keen on that one, depending on how long it would take (which he couldn't answer).

Anyone tried PT for achilles enthesitis/tendonitis? Was it successful?


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx
Re: Achilles Update [Re: kglenn] #282600 02/08/19 08:53 PM
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kglenn Offline OP
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Sorry you are still having trouble, achala. What is a hole in the calcaneus?


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx
Re: Achilles Update [Re: kglenn] #282601 02/08/19 09:22 PM
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achala Offline
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Erosion of the calcaneus bone It’s a stage before the spurs formation. A consequence of the mass predisposition to fill in the void.
Buț now seriously. The only time I can move the foot with no issue is the swimming pool. So I guess you could try light physio to stretch the Achilles a bit. Now I don’t think this will clear the inflammation as you aware is systemic.

2 points:
1. one rheumatologist few months ago upon hearing suggestions from orthopedist to put the foot into a boot told me no way as it will most probably lead to bone edema.
2. My rheumatologist in response to my asking for biologic said: probability of biologic remission works in 60% of the cases. In case one doesn’t work you will ask for another and the another.

Are we ready to give up yet Karren?
I keep trying to find what works for me. But it’s like trying to find the God. The more you search you discover what God is not.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Achilles Update [Re: kglenn] #282602 02/08/19 10:40 PM
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Banana Offline
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Physical Therapy has helped me a lot. Yes, you need to treat the inflammation but gosh, you heal a lot faster with exercise.

My favorite exercise, which I do whenever I feel like it is coming back Sitting in a chair, lift one leg off the floor. Pretend your big toe is a pencil and PRINT the alphabet in the air. Three/four times a day. My fav because I can do it anywhere, even on an airplane. Both feet.

Good luck.

Anna

Last edited by Banana; 02/08/19 10:41 PM. Reason: spelling

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: Achilles Update [Re: kglenn] #282610 02/11/19 03:30 PM
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Miguelito Offline
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Just a bit of advice: If you do have Achilles surgery, be hyper-careful and hyper-vigilant post-surgery. I made one (bad) mistake two months after surgery and almost completely retore my Achilles. They elected not to do surgery after I retore it (they believed it still had some attachment, and also I was clearly an idiot who would likely just re-tear it again). In hindsight, I wish I had really pushed them to re-do the surgery. It is only now, two and a half years after surgery that I am approaching full recovery, and even now that calf is much smaller and stronger than the other.

Risk of re-tear is the #1 drawback to Achilles surgery. Absent the risk of re-tear it is a very effective surgery, my opinion.

Good luck!


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Achilles Update [Re: kglenn] #282628 02/12/19 03:19 PM
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kglenn Offline OP
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Thanks, Everyone for your input! I will start PT on Friday and we'll see how it goes...


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Xarelto; vitamins D3, B12, folate Primary non-responder to Enbrel and Cosentyx

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