Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group complete tendon rupture

Janet, I'm so sorry to hear of this. My sweetie tore his achilles in 2008 - twice - it had shredded up where the tendon joins the calf muscle. It was pretty awful, but he only needed surgery once. He has PsA, too, by the way.

When you say you're on aggressive treatment, what do you mean, please? Just curious.

I hope you can keep your brain busy during your recovery. Find ways to keep your spirits up. You have a truly tough road, but physiotherapy and hard work will go a long way. Also, I'm not sure about how it might be with your rupture, but my sweetie insisted on being given a swimming cast as soon as was practical. Once he could get around relatively easily (still in cast) and felt he could, he got into the pool and started stretching and swimming. The doctors were amazed at the condition of his muscles when the cast came off. He was in it, all told, for 4 months (2 ruptures - it healed and it ruptured again). He's on Enbrel, by the way.

Hugs,

Janet, I just read the rest of your thread. Respectfully, if your pain levels are up that high having gone off all your meds, (biologics and sulfasalazine in particular), I would hazzard that the meds were keeping you from worse pain than you would have had without them. There is nothing that can completely halt the progression of the disease. It will continue, but as I understand it, it progresses more slowly on these meds than off. There is no masking effect with these meds. They have very definite mechanisms and they work. Your pain levels have increased because there is nothing fighting the inflammation in your body anymore. Nothing fighting the pain anymore.

By the way, I am also on a biologic (Enbrel - Remicade before that) and have been for six years now. I have new syndesmophytes in the lumbar area and my right SI is now showing signs of fusing. But you know what? I have a feeling it would have been much worse without the biologics. And I know how wretched I feel when I have to go off my meds due to infection. Wretched is polite, by the way.

You said the key to these things yourself. We must listen to our bodies. Odd weakness, easy sprains, these are not coincidences in us and must be investigated in case they are signs of something more serious. The entheses are affected in both AS and in PsA. That's where the inflammation occurs in us. Like you, I have a tendency to minimize things like ankle twists or odd muscle pulls. I guess the moral I will take from your story is that we shouldn't do that. If we ignore our body's signals, it doesn't matter what meds we are on.

I hope you can find some relief from the higher levels of pain soon.

Hugs,

Hi Kat!! Well my surgeon considers my treatment "aggressive" considering I'm on a biologic drug, (2) different DMARDs, and (1) NSAID. Throw in a steroid every now and then for good measure. He said there isn't much more treatment-wise to be done.

I guess the way I am looking at all of this is that these meds ARE good and they are a god-send -- Enbrel when I first went on it worked for me within a week and a half. HOWEVER, I'm wondering in my case if they have caused me to become too dependent on them -- not in the addictive sense of course, but in the sense I got used to the fact they did work and did help so maybe I wasn't paying enough attention to some subtle signs???? Or did they in fact cover up those subtle signs too well for me to notice. Who knows now. There's no real easy answer. I know I can't function without the treatment I'm on -- these past couple of weeks have shown me that. I just hope there isn't a trade-off at the end.

When your sweetie had his achilles rupture was he allowed to bear any weight at all? That's the hard part of all of this. I've been practicing trying to get around, but with bad knees, hips and back, I can't "hop" with crutches like some have suggested down my stairs.

A walker has its own set of issues for the upper body skeleton.

Since he only had surgery once I am assuming the 2nd rupture healed with conservative treatment?

Janet, I think that when we're on these meds, we feel so much better that we don't want to listen to the signals.

My sweetie was not allowed to weight bear; although, he tried. The first rupture, at the calf muscle, left the tendon unable to be repaired by surgery, as muscle is like trying to operate on hamburger. It was left to heal naturally. Then ruptured again. That was the one that was surgically repairable. Even with swimming and exercise, it was fully six months after that before he could walk with a normal gait (and the doctors were amazed by how quickly it happened!!)

When it comes to stairs, there were times he had to go up and down on his butt. He also had bad knees at the time and has arthroscopic surgery on one of his knees mere weeks after the rupture surgery. For carrying things from room to room, use a napsack. That will leave your hands free for the crutches. And think of the crutches as strengthening exercise for your upper body, abs and arms. Really. Stretch out if you have to go a bit of a distance, take it slowly and work on precision of technique rather than speed. As time goes on and your upper body muscles become stronger, you may find stairs easier. I was on crutches with a broken leg many years ago and that's what I did. Crutching became exercise and as the days went on the non-weight-bearing became much easier.

I don't know if that helps, but I hope it does.

Hugs,

Janet, so sorry to hear all you have been going through. Unfortunately ruptered tendons are a specialty of AS and many of us are all too familiar with. I have a ruptured biceps tendon, the other one is half way there, a rupture quad tendon and many more in the works. I hope things work out well for you, sounds like a tough road ahead.

Cindy

thanks for your reply janet.

i think maybe the LDN really is helping the tendons; i guess time will tell.

i'm not on any drugs that would be considered pain killers (no nsaids, no tylenol, no narcotics, no tramadol) so nothing that would mask pain.

and i've always been pretty sensitive to pain. when they scope my stomach when it really hurts, all they ever see is "gastritis" not ulcers. and when my tendons hurt so bad i can barely move it / use it, the doctors and PTs tell me its just "tendonitis" and yet it hurts so bad.

so, i do think, now that i think about it, that pain is a good gauge for some perhaps but not for others.

i'm not sure why the LDN seems to have helped the enthesitis more than anything else? but that alone is a godsend. don't know if LDN would help you? then again you are on a biologic, that should be even better i would think. at least one person on here either is or was on a biologic and LDN at the same time. not sure if it is something you'd want to consider?

anyway, thanks again for posting your experience and replying to my post. and too, so very sorry about this for you, as before the LDN, tore a number of tendons and ligaments. but not for the last 2.5 years now.

Oh, I forgot to add that Prednisone can also add risk to tendon ruptures.

thanks for that reminder cindy,

i had forgotten......

another reason to not use the pred unless necessary!

thanks again!

UPDATE: I had my surgery last Monday. They couldn't graft the ruptured tendon because the other (smaller) tendon in my ankle had also ruptured and that's what they were going to use to transfer. That was not seen on the MRI. The larger one ruptured at the top, the smaller one at the bottom. That's what I remember them saying. My tendons and ligaments were a "mess" they told me. I will find out exactly what they did with these tendons on Thurs. at my first post-op appt. because I wasn't coherent enough on Monday to remember. I was sent home with a pain med/nerve block pump and when that ran out on Wednesday I felt it.

i am very sorry to hear that.

i do hope though that there is something they can do.

if you're still having trouble with your tendons, maybe you could consider the LDN. prior to LDN, i was so concerned about my tendons and ligaments, especially when i tore the ulnar ligament, or the IT/TFL attachment to the trochanter. every time i had a tear, i worried that it would get as bad as those two. feel very lucky that those two bad ones eventually healed. if i hadn't found the LDN and/or the supplements i'm on, i'm afraid i would have eventually had a rupture too. mine were that bad, but are so much better now.

once things are a bit better, just something to think about.

if i've simplified it too much, i apologize. its just that i guess i wish i could help in some small way. and i was surprised that the LDN helped my tendons as much as it did. the supplements seem to have only helped even more.