Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about the knees

My knees have never been one of my bigger issues. As I've gotten older, they hurt every once in a while, nothing I couldn't handle. I literally woke up in excruciating pain, difficult to bear weight & navigate stairs one morning back in March just days before my rheumy visit.

When I saw her, she didn't like how it looked - swollen, hot, tender, so she ordered an xray. Massive joint destruction, much more than would be seen with just osteoarthritis, which is also present, but the underlying inflammatory process has literally eaten part of my kneecap!! She said I needed to see my ortho doc, and soon.

Saw ortho doc today. Need a new knee, and soon, he said. I guess I'm puzzled as to how one just suddenly wakes up one day in so much pain with so much destruction that you need a new knee without much warning????

To buy me a little bit of time and calm the inflammation he is ordering OrthoVisc shots given in a series of 3 shots at a total cost of about $2400 of which I will have to pay roughly $500. Not sure I can justify the cost of them for a temporary solution but I was totally thrown for a loop when he said I needed a totally new knee.

Has anyone tried these shots? And who has had knee replacement?

I'm questioning now as to whether my treatment is merely "masking" symptoms - it doesn't seem to be halting much disease progression unfortunately.

I have had the Synivisc shots(a similar product) and then had both knees replaced. I got better relief from cortisone shots then the Synivisc. I know of others who were helped a lot. I think that the more damage you have, the less helpful they are.

I love my knee replacements. It was a bit painful at first, but my knees felt so much stronger then my original knees. There is a great website just for people having knee and hip replacements. It's called "One your feet" or "On our feet". If you Goggle it, you will learn a lot. There is also a book called "The Knee Replacement Bible" that will be of help. The more you are prepared in advance, the better.

I know that there are other here that have had knee replacements. Both knee and hip replacements are common with AS.

Thanks for the website info. I've been trying to read as much as I can today. I'm just still kind of stunned about the whole thing. Like I said, my knees haven't been much of an issue till one day in March. Evidently pain isn't the only measure of damage being done.

My doc even said because of the underlying inflammatory disease the shots won't be as effective. He told me even new knees may not last as long as they would in someone he would be doing replacement in with just osteoarthritis. He suspects the other knee is just as bad, even though it's not even as symptomatic as the right one, most joints are affected bilaterally in these types of arthritis so he is going to image it as well.

The shots would only stall things for a short while. Surgery is inevitable. I live alone with a fair amount of stairs. Recuperation has me the most panicked, not the surgery itself.

Janet - You've got some great responses here. Synvisc is good, does not damage the tendons and ligaments like cortisone - Synvisc is based on Hyaluronic Acid. If you look up shoulderdoc.co.uk and put in a search for injections, then Hyaluronic Acid or Symvisc you can read up more about it. You've got a good orthopos who knows his Symvisc and has advised that due to the fact that yr knee is soooo bad it won't be as effective - which could well be the same story if he had used cortisone!

NOw, as for the stairs. Any place you could hole up in whilst your knee is given a chance to heal? Stairs and knees (and hips for that matter) are not good playmates. Need time to heal. MIght want to discuss with yr orthopod.

Also, ask yr orthopod what kind of knee he will use - there are soooo many options out there now. Check into the surgery site here on KA, I've posted endless material on knees (alwyas thinking of Cindy and her promlematic knees). So you might glean a few more facts to help along the way. But stairs you don't need...

As for knees per se. Yes from over here. Mine are horrible. Awaiting to find me an orthopod. See what is what. Have had months of knee pain and swelling etc etc. Crawling around the house and all the rest. Today knee is about back to normal size and can manage stairs more easily. But...phew!

OK me dear. Go well. You'll soon have new knees. Relief for you.

(Typoes an all - diff to see clearly. Now got me an ophtho appt. Yippee. Hope springs!)

Hi Janet, I'm so sorry you are having this knee problem and hope for some relief for you soon. If you are not going to have that knee replaced for a while I would suggest the synvisc shots. These shot do help many but as you know they are only a temporary fix for the problem and will not change the fact that you will need it replaced eventually. As Molly said, the synvisc is a better way to go than Cortisone as the synvisc doesnt cause added problems with the surrounding connective tissues. Don't worry about the statement of it won't last s long. This is not true and present damage has nothing to do with the duration of the new knee. The main thing is your confidence in your surgeon. Talk to him about all this, write down questions so you can have a list of them with you when you seem him next time and all your questions can be answered.
I had my left knee replaced and I worked in PT for many years so if you have questions feel free to ask away.
Cindy

Good luck Mollyci with your ortho appt. Hopefully new knees will be in your future soon too. Unfortunately, I will have to contend with the stairs, not sure how that will work....

Cindy, I guess my main issue with the shots is knowing they are temporary, there's always a chance they won't be effective for me, and the cost of course. Everyone that I have since heard that has had them still ended up with surgery. My surgeon said the reason he thinks new knees may not last as long is because my underlying inflammation needs to get under better control, otherwise it just continues to do damage. I don't what else I can do to control it. I've tried most everything. And I'm not truly symptomatic of the amount of damage that is occurring, which is most scary.

He did give me a local shot of cortisone yesterday, but already cautioned me that this will not be my ongoing treatment, it was mainly to help reduce the pain & swelling quickly. If I do decide to go with the OrthoVisc shots, it will be at least 6 weeks before I am able to start them. There is some difference between the SynVisc & the OrthoVisc but I can't remember what he told me as I was still in shock at that point. And for some reason, he said the Ortho ones would be better suited for me. I believe they are very similar.

I'm actually able to get around fairly good so when I came back to my office and told everyone I need a new knee, they just looked at me in disbelief! But the surgeon did say at some point that will all change, and perhaps suddenly. Which is how it all started - suddenly.

What was your mobility like when you had yours done? Were you having to use a cane at that point? Did you do the series of shots first? How long was your relief before you had surgery?

Thanks for any info you can share.

wow, sorry about your knees! would have thought symptoms would have matched damage, to have that much damage unknowingly, can understand your surprise. good luck with getting it treated.

Maybe it's my almost $3000/monthly "cocktail" I take to control the disease that's keeping me from "feeling" the damage. Depending on how you look at the situation that can be a good thing or a bad thing. Good that my pain hasn't yet caught up to the damage, but bad wondering what else is lurking below that I haven't yet started to feel. And how bad will it be when it finally appears???

Like most of us I spent years trying to get someone to "fix" me, now every doctor I see is practically doing cartwheels to do just that!

Here ya go Janet -

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Yes, they are similar. Both based on Hyaluronic Acid. Prof Funk, orthopaedic upper limb surgeon, UK (see shoulderdoc.co.uk) Funk was one of the first to use this product. Funk is from Sth Africa. He brought his fantastic knowledge with him and opened the curtains on specialist surgery and many products and preps. Good man. Just missed his expertise on taking on my shoulder. Sigh.

See yr orthopod, ask him questions - write em down. And, take someone in with you - easy to miss info. Or, take in a recording machine. And, no more cortisone - can do, and does, far too much damage. Then the surgeon is left to pick up the pieces...hmmmmmmmmm. Not good!

Quote: "Like most of us I spent years trying to get someone to "fix" me, now every doctor I see is practically doing cartwheels to do just that!"

Only met one 'cartwheeler' so far - his objective was to 'chink-chink' all the waay to the bank via a pvt hospital op on my shoulder that at the moment is quite UNecessary!! Other cartwheelers? have yet to meet... Prob take one look and run...haha