Spondylitis Association of America

Achilles thoughts, please!

Posted By: kglenn

Achilles thoughts, please! - 06/18/18 08:59 PM

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.

Posted By: Miguelito

Re: Achilles thoughts, please! - 06/19/18 02:21 AM

I know, from experience, that Achilles issues are part of AS, but did that result in an injury, too?
Posted By: rumble

Re: Achilles thoughts, please! - 06/19/18 04:57 AM

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.
Posted By: achala

Re: Achilles thoughts, please! - 06/19/18 06:37 AM

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
Posted By: Casabby

Re: Achilles thoughts, please! - 06/20/18 12:12 AM

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.
Posted By: SouthernMoss

Re: Achilles thoughts, please! - 06/21/18 06:51 PM

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.
Posted By: kglenn

Re: Achilles thoughts, please! - 06/21/18 08:32 PM

Thank you all for sharing your thoughts and experience.
Posted By: CBMom

Re: Achilles thoughts, please! - 06/22/18 02:17 PM

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.
Posted By: jewelz

Re: Achilles thoughts, please! - 07/17/18 07:59 AM

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.
Posted By: kglenn

Re: Achilles thoughts, please! - 07/17/18 03:41 PM

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.
Posted By: Awnie1301

Re: Achilles thoughts, please! - 07/20/18 01:36 PM

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.
Posted By: kglenn

Re: Achilles thoughts, please! - 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
Posted By: achala

Re: Achilles thoughts, please! - 08/27/18 07:31 PM

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.
Posted By: kglenn

Re: Achilles thoughts, please! - 09/10/18 08:49 PM

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!
Posted By: achala

Re: Achilles thoughts, please! - 09/15/18 10:08 AM

3 months into Achilles trouble. Considering changing to automatic gearbox.
Posted By: kglenn

Re: Achilles thoughts, please! - 09/15/18 10:37 PM

Automatic gearbox?
Posted By: Winston

Re: Achilles thoughts, please! - 09/17/18 03:45 PM

Also known as automatic transmission. Much easier on the achilles than a stick shift.
Posted By: kglenn

Re: Achilles thoughts, please! - 09/18/18 01:35 AM

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.
Posted By: achala

Re: Achilles thoughts, please! - 09/18/18 06:32 AM

Yeah it’s fun.
So are you on Cosentyx right now?
Posted By: kglenn

Re: Achilles thoughts, please! - 09/18/18 02:12 PM

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.
Posted By: Awnie1301

Re: Achilles thoughts, please! - 11/10/18 03:23 PM

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?
Posted By: kglenn

Re: Achilles thoughts, please! - 11/10/18 11:09 PM

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
Posted By: achala

Re: Achilles thoughts, please! - 11/10/18 11:12 PM

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.
Posted By: Miguelito

Re: Achilles thoughts, please! - 11/14/18 01:03 AM

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.
Posted By: achala

Re: Achilles thoughts, please! - 11/21/18 09:19 PM

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😃
Posted By: Banana

Re: Achilles thoughts, please! - 11/21/18 10:24 PM

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

Posted By: Awnie1301

Re: Achilles thoughts, please! - 11/28/18 11:12 PM

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.
Posted By: Ucla08

Re: Achilles thoughts, please! - 11/29/18 03:22 AM

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.
Posted By: achala

Re: Achilles thoughts, please! - 11/29/18 04:02 PM

In addition to SSZ I started to use diclac gel for the bursitis and it helps
Posted By: Awnie1301

Re: Achilles thoughts, please! - 11/30/18 01:17 AM

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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