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Re: Achilles thoughts, please! [Re: kglenn] #282017
11/10/18 03:23 PM
11/10/18 03:23 PM
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Awnie1301 Offline
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Just wondering how everyone is doing. I am having a really rough time with my Achilles.

It is so painful that I am getting desperate. I saw a musculoskeletal radiologist yesterday about possible injection and/or prolotherapy. He said he didn’t want to do anything even though on ultrasound my Achilles “looks terrible”. He is concerned he would make things much worse and set off a bad flare.

I feel like my options are limited. Someone mentioned a podiatrist. Did that help? My rheum is out of town right now but I have a connection to another rheumatologist (husband) and he is suggesting adding Sulphasalazine.

Anyone found the magic formula?

Re: Achilles thoughts, please! [Re: kglenn] #282022
11/10/18 11:09 PM
11/10/18 11:09 PM
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Hi Awnie,

Sorry you are having so much trouble! That doesn't sound fun. Why would an injection lead to a flare? My understanding was that the risk was rupture. But that risk seems to increase the longer it is inflamed as well (?). Or is that the prolotherapy?--need to look up what that is wink.

My achilles is the same--still swollen, but only mildly painful (mostly when I first use it). It's been 18 months now *sigh*. Nothing I have tried so far has touched it (steroids, Voltaren gel, Embrel, Cosentyx)--or my mild axial symptoms, either. I am allergic to sulfa drugs so sulfasalazine is not an option for me. I will see my rheumy in December and decide what to try next. Or maybe I will take a break from throwing drugs at it with no effect.

Have you tried methotrexate? It seems to work best for peripheral inflammation. My son takes it for his peripheral spondylitis (knees, mainly) and it really helps him. Apologies if you've mentioned this and I didn't remember smile


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] #282023
11/10/18 11:12 PM
11/10/18 11:12 PM
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achala Online
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3 months into sulfasalazine 30/40% improvement. I stopped icing my Achilles as at some point I managed to get frost bites 🤣. Sore still but can walk.


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: Awnie1301] #282047
11/14/18 01:03 AM
11/14/18 01:03 AM
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Couple of thoughts. I have read and been told that Cortisone shots are not advisable for the Achilles. I had one in my Achilles the day before my second hip surgery and injured my Achilles permanently six months later. But I thought the shot was great until then. And I have had probably a dozen cortisone shots and think they are great in advisable joints/bones (shoulders especially, hands). Did nothing for my hip, which is not unusual.


Use your judgment. But my real caution is that if you do have Achilles surgery be EXTREMELY cautious for a long time after. I made one mistake two months after my surgery and completely retore it.

Last edited by Miguelito; 11/14/18 01:08 AM.

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] #282116
11/21/18 09:19 PM
11/21/18 09:19 PM
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achala Online
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This retrocalcaneus bursitis can get serious? There is also some erosion of retrocalcaneus going on. How urgent is this? Large amounts of homemade wine can help?
I forgot in your country it’s Thanksgiving.
Happy Thanksgiving then!! Enjoy family time😃

Last edited by achala; 11/21/18 09:48 PM.

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] #282117
11/21/18 10:24 PM
11/21/18 10:24 PM
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Please see a foot dr. There are exercises that help (and some that make it worse, so you'll know what not to do) The shots if not done by an expert are not advised.

I had a lot of trouble but following the foot dr instructions, it is much better. Certain, really ugly shoes help too. frown

Anna


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 thoughts, please! [Re: kglenn] #282159
11/28/18 11:12 PM
11/28/18 11:12 PM
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Thanks everyone for your responses.

Prolotherapy is often used for micro tears of the Achilles. Essentially they make a whole bunch of micro holes in the Achilles with a needle and glucose solution. The body then creates an inflammatory response and sets about healing the area with scar tissue and voila the Achilles feels better. As you might imagine this inflammatory response could easily become systemic (or everywhere) in an individual with AS.

They will only inject cortisone if there is a bursa to inject it into. I didn’t have one.

I have been trialing Sulphasalazine and have doubled my biologic agent for the past few weeks and nothing is helping.

I see my Rheum next week. Have been doing physio and working out in the hot pool (muscle strengthening). Getting very frustrated. Feel like if I can’t walk my quality of life will really be affected.

Re: Achilles thoughts, please! [Re: Awnie1301] #282161
11/29/18 03:22 AM
11/29/18 03:22 AM
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I have had a lot of issues with my achilles - at one point I had to buy bigger shoes bc they were so swollen. I started SSZ earlier this year and after about 3 months, I started to notice less tightness/stiffness (it took a while though...).

After about 6 months, they were a lot better. I had previously done PT, ultrasound, FSM, tried inserts, saw a podiatrist, more PT, etc... All of that combined was about 1/10 as helpful the SSZ. At one point they brought up possible steroid injections but those are super, super risky for achilles rupture. No thanks!

Side note: A few weeks ago, I started having more tightness/aggravation in my achilles. A few weeks prior to that, I had started taking iron along with the SSZ because bc the turmeric I was taking was interfering with iron absorption. Turns out that iron interferes with SSZ so it was all kind of a mess. I think I've got it sorted now but if your meds aren't working, it might be worth checking for interactions. My rheum never brought any of that up when I started the meds.

Re: Achilles thoughts, please! [Re: kglenn] #282167
11/29/18 04:02 PM
11/29/18 04:02 PM
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achala Online
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In addition to SSZ I started to use diclac gel for the bursitis and it helps


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] #282176
11/30/18 01:17 AM
11/30/18 01:17 AM
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Awnie1301 Offline
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Thanks. We had avoided SSZ as I had an allergic reaction to sulphate meds when I was younger. My docs thought it would be worth trying as there may be a chance I wouldn’t react to the SSZ. I was on the SSZ for about 2 weeks when all of the sudden I seemed to get the allergic reaction again. I am holding off until I see my rheumy next week.

I think I have tried everything non pharmaceutical. Physio, massage, heel lifts, orthotics, ultrasound, heat/cold.

My right foot is a half size, if not a full size, bigger than my left from the swelling. I am living in slippers as they are the only thing comfortable. Not sure there is much else to do at this point.

Thanks again

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