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Achilles thoughts, please! #280580
06/18/18 08:59 PM
06/18/18 08:59 PM
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kglenn Online OP
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Hey All,

I started Enbrel on April 1st of this year and had my 12th injection yesterday. So far, the results are underwhelming. I may be noticing a slight improvement in my axial symptoms the last couple weeks (hard to tell, because they have been generally mild anyway). But my peripheral symptoms don't seem to have responded at all so far. I am planning to give it another 6-8 weeks, per my doctor's advice and my own research (including your experiences--thank you!), and hope that the med will kick in fully.

But I am concerned about my achilles, which has been significantly swollen for over a year now. It has failed to respond to a short course of steroids, topical voltaren gel, or icing and taping. And so far the Enbrel hasn't touched it. I know a steroid injection may be an option, but understand it can be pretty risky for rupturing the achilles. At the same time, it seems that the extended inflammation brings the same risk *sigh*.

I'm also feeling more pain and stiffness going up my calf. I'm not sure if this is directly or indirectly related to the swollen achilles. I think most likely the latter and due to my having to limp more than I was (usually just when I first get up from sitting/lying--until my achilles warms up).

Any experiences or suggestions on what to do next, if the Enbrel fails to help? My doctor has suggested we try methotrexate. Not sure if that's in combination with the Enrel or in place of it (guess it depends). I understand it is more helpful for peripheral inflammation and not so much for axial, but my doctor says that his father (a retired rheumatologist) feels strongly that a subset of patients with AS have a good axial response to MTXH. He would really like me to try Otezla, but my insurance declined to cover it.

Thanks!

Last edited by kglenn; 06/18/18 09:10 PM. Reason: forgot to include info

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: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Achilles thoughts, please! [Re: kglenn] #280581
06/19/18 02:21 AM
06/19/18 02:21 AM
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Boston, MA
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Miguelito Online
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I know, from experience, that Achilles issues are part of AS, but did that result in an injury, too?


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 thoughts, please! [Re: kglenn] #280582
06/19/18 04:57 AM
06/19/18 04:57 AM
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rumble Offline
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Having Achille's problems can be related to having plantar fasciitis. To rest it, maybe see if your doc would be okay with you wearing a cam-walker boot for 4-6 weeks. Given that steroid shots can sometimes lead to rupture of the tendon/fascia, using a boot would be less risky. I had huge issues with PF and spent a lot of time in boots prior to having surgery on both feet (different times) prior to referral to rheumy.

Also, what dose of Enbrel are you taking, the 25mg twice a week or 50mg once a week? When I used Enbrel, the latter (once a week) dosing did not give me much relief. It was only for about 2-3 days, then the rest of the week was awful. Because of this, the rheumy tried me at the former (twice a week), which worked great. As for the MTX, I was on that before going on any biologics and still take it. By itself, it isn't much use for my PsA, but with a biologic, they work together. (I ended up stopping the Enbrel when it seemed to have quit working. In hindsight, that might actually have been a huge flare in the winter time.) Not sure I'd bail on Enbrel before trying the other dosage. But that's for your doc to say, probably. Good luck.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Achilles thoughts, please! [Re: kglenn] #280584
06/19/18 06:37 AM
06/19/18 06:37 AM
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achala Online
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Seems I am starting to have Achilles issues as well (among others of course). limping a bit, and can pin point the pain exactly on the bone just above the heal, while pressing. I had a foot injury in Jan 2017 (nothing broken, but hit the wall very hard), and since then more or less cannot recover full motion of the ankle. when I sit in an awkward position it starts to pulsate like the neck/occipital pains I have. Adding to my uveitis/neck issues, its becoming a bit tiring. I am still on Arcoxia 90mg. In the last ditch attempt I am trying to switch to NSD for 1 month. ITs hard because I am very active person - hiking/swimming/yoga/plenty of walking...ufff


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
Signs of inflammations/erosions on MRI`s for axial and Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: Achilles thoughts, please! [Re: kglenn] #280587
06/20/18 12:12 AM
06/20/18 12:12 AM
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Posts: 127
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I have a long history of Achilles problems dating back to well before my spondylitis diagnosis. I played tennis for 40 years and my left Achilles got trashed. A year ago I had significant heel pain and the foot MD indicated that I had permanent Achilles damage along with plantar fasciitis. I also have osteoarthritis in my big toe joints and have chosen to postpone surgery for now. Instead I have cut back on hiking and health club pounding and have found as the front of my foot improves, so does the Achilles. But I know that I am at higher risk for an Achilles rupture and I never want to go there. When I was discussing potential joint fusion for the big toe, the surgeon told me that Achilles repair would take at least a year to recover from. Thus my reduction in activity.

I also have had Type 1 diabetes for 41 years and believe that I am relatively healthy because of exercise. But arthritis is mostly ruling my world these days and less exercise means that diabetes is harder to manage. Tendon problems are common with diabetes and I suppose that made me susceptible to Achilles damage.

My rheumatologist is adamant that my hand and foot issues are osteoarthritis. Interestingly my inflammatory spondyloarthropathy is well controlled with NSAIDS. The weird pain and swollen joints, my back, sacral joints, chostochondritis, etc. are mostly fine. Unfortunately the NSAIDS aren't doing much for my recent severe joint pain.


Diagnosed with Inflammatory Spondyloarthropathy 2009. Type 1 diabetes since 1976. Hypothyroidism since 1996. Generalized Annulare Granuloma since 2012.
Meds: Naproxsyn, Flexeril, Synthroid, Insulin with insulin pump
Re: Achilles thoughts, please! [Re: kglenn] #280603
06/21/18 06:51 PM
06/21/18 06:51 PM
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SouthernMoss Online
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I think Methotrexate would be a good next step for your achilles. It's worked well for many people over the years. And if it doesn't help, your rheumy can use that failure as ammunition to appeal your insurance's denial of Otezla.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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: Achilles thoughts, please! [Re: kglenn] #280605
06/21/18 08:32 PM
06/21/18 08:32 PM
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kglenn Online OP
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kglenn  Online OP
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Thank you all for sharing your thoughts and experience.


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: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Achilles thoughts, please! [Re: kglenn] #280609
06/22/18 02:17 PM
06/22/18 02:17 PM
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Posts: 71
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CBMom Offline
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My insurance covered Otezla with a biologic, but I had to fail MTX and other DMARDs first (I have basically been on them all - MTX, Arava, Sulfasalazine, Plaquenil etc). Otezla has helped a lot with my feet. Both with my achilles tendons and with plantar fasciitis. And with ankle pain and swelling. I still have some foot pain, but even that is much better on Otezla.

The other thing that really helped my feet was wearing supportive shoes (sneakers) all the time, with custom made orthotics. A podiatrist can make them.

Re: Achilles thoughts, please! [Re: kglenn] #280782
07/17/18 07:59 AM
07/17/18 07:59 AM
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Hi kglenn

I'm wondering how your Achilles is doing?

I have quite severe achilles enthesitis in both heels, which was misdiagnosed for many years as plantar fasciitis. I was put in custom orthotics that shoved my arches up too high, I told several podiatrists that I really didn't believe plantar fasciitis was my issue. Finally, a doctor listened. So, my advice to you is this...if anything anyone (Dr or not) tells you to do makes it worse or gives you a bad feeling, follow your instincts. My feet ended up in worse shape because of those crazy orthotics, I fell, twisted my ankles, tore ligaments that need to be surgically repaired, got steroid injections for "plantar faciitis" that wasn't there and that caused my arch on my L foot to fall now, wore crazy shoes that just made my feet stiffer and sorer...for years...I had my feet/calves casted and walking cam(ed) - I did everything the doctors told me to do and they were wrong and I went to more than 1 foot doc, I went to numerous podiatrists. Finally, now I have a great one. But I was in such pain for years. I did do injections for the achilles enthesitis, I had to. I was in so much freaking pain, it felt like raw meat on the heals of my feet. But now there's nerve damage, for the years and years it went unchecked. Listen to your body. See multiple, multiple doctors for different opinions. Find a great doctor to help you.

Re: Achilles thoughts, please! [Re: kglenn] #280788
07/17/18 03:41 PM
07/17/18 03:41 PM
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kglenn Online OP
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Thanks for your input, CBMom and jewelz--I appreciate it!

I have now been on Enbrel for 15 weeks. My axial symptoms vary, but overall might be slightly better (with the exception of one brief flare, they have always been mild). My right achilles remains unchanged.

I am quite certain that there is no plantar fasciitis, as I only have swelling/pain in the back of heel. Thankfully, it does not feel as you describe, jewels. I even walked all over an amusement park yesterday and it held up well. It is stiff and sore when I first start walking, but then loosens up and does alright.

If I have no response by my next appointment, I expect I will start on MTX (with or without the Enbrel) and see how that goes. If that doesn't work, perhaps my insurance company will agree to a trial of the Otezla.

Last edited by kglenn; 07/17/18 03:42 PM. Reason: typo

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: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
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