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Re: Achilles thoughts, please! [Re: kglenn] #280805
07/20/18 01:36 PM
07/20/18 01:36 PM
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I also have Achilles involvement on the right side. I am a fairly new diagnosis of AS but I am sure I have been symptomatic for over 20 years. It wasn’t until my Achilles started to act up last summer that I got in to see someone.

I have had one cortisone injection to the Achilles. It was amazingly effective. It lasted a few months. I was able to do everything. I was also started on Enbrel after failing Methotrexate (it made me feel horrible). My Achilles is bad again and the Enbrel is only mildly effective. I spoke with my Rheumy about another cortisone injection but have decided I will hold off until I am doing something big in my life I.e. traveling. I expect that maybe 2 or 3 will be the max before risk is to high for rupture.

Re: Achilles thoughts, please! [Re: kglenn] #280810
07/20/18 06:29 PM
07/20/18 06:29 PM
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kglenn Online OP
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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


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] #281181
08/27/18 07:31 PM
08/27/18 07:31 PM
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achala Online
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One of the rheumatologist who als did eco to my left Achilles told me Achilles enthesitis is an axial SpA not a peripheral one. She mentioned under no circumstances to put the foot into the orthesis as the inflammation of buristis could create swelling up and endema. I did the ESWT first session last week and seems to be better a bit. I also ice it several times a day and after prolonged rest tends to become better. But far from recovery. Limping make my knee/hip hurt also.


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] #281360
09/10/18 08:49 PM
09/10/18 08:49 PM
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Update: No improvement whatsoever from Enbrel after a full 5 months. Apparently I am a primary non-responder. Our attempt to get a 1-year trial of Otezla also did not work out. Saw rheumy today and he has started me on Cosentyx. Any advice re: this drug? Thanks!


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] #281405
09/15/18 10:08 AM
09/15/18 10:08 AM
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achala Online
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3 months into Achilles trouble. Considering changing to automatic gearbox.

Last edited by achala; 09/15/18 10:09 AM.

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] #281407
09/15/18 10:37 PM
09/15/18 10:37 PM
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Automatic gearbox?


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] #281413
09/17/18 03:45 PM
09/17/18 03:45 PM
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Winston Offline
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Also known as automatic transmission. Much easier on the achilles than a stick shift.

Re: Achilles thoughts, please! [Re: kglenn] #281422
09/18/18 01:35 AM
09/18/18 01:35 AM
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kglenn Online OP
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Oh--the switch to automobile terms threw me off--lol! Yes, I drive an automatic I expect a standard transmission would not be so fun...

All my inflammation is up again yesterday and today, and my achilles (also sacroiliac and low back) has been quite a bit more painful. Boo.


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] #281423
09/18/18 06:32 AM
09/18/18 06:32 AM
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achala Online
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Yeah it’s fun.
So are you on Cosentyx right now?


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] #281424
09/18/18 02:12 PM
09/18/18 02:12 PM
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kglenn Online OP
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Yes--just took my second dose on Sunday. There are five weekly doses and then it goes to every 4 weeks. My rheumy said to let him know if I didn't have improvement after the loading doses.


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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