Anybody else have Ankylosing Spondylitis?

[baconbits]

Just curious to know if anyone else with chronic knee problems out there has Ankylosting Spondylitis?  It's another Rheumatic, autoimmune arthritis.
Cindy

[Jaci]

I was diagnosed with AS when I was in my early 20's, having had unexplained back & hip problems starting around age 15. I had a very active case into my late 20's to early 30's, but credit alternative therapies (especially Rolfing, Hellerwok, and a diet high in unprocessed foods) with helping it go into remission. I've always maintained a very healthy life style including a healthy diet and plenty of exercise, weight-training in particular. Over the last 10 years or so (i'm in my late 40's), I've had an occassional flare-up, but mostly just residual issues from having bone spurs in my spine and neck.

I have arthrofibrosis, a condition where the body produces masses of scar tissue. It's also believed to be an immune system condition but it's not known whether it is in any way related to AS. When I had an active case of AS, my knees were one of the few areas of my body that were unaffected by the condition. 

Jaci

[baconbits]

Hi Jaci,
Just curious and thought I would throw that question out there.  There aren't many of us out there.   I'm glad you have been able to keep your AS somewhat under control.  I too have had AS since my early teens, now 49.  I had gone through about a ten year remission, so to speak, in my 30's but have been in one giant flare after another for the last 10 years.  AS is now attacking every joint in my body.  I have been looking for answers and to see if anyone else has some of my problems with knee surgeries due to the AS.  Yes, arthrofibrosis is a big part of AS and it hits me with a vengence with every surgery, 7 knee surgeries, 3 in the last year, and 2 more to go in the next few months.  The surgeons can't figure out if it is the arthofibrosis or the damaged ligaments from the AS , both, or femoral nerve damage, or nerve damage from the lower back from the AS that causes my TKR to buckle.  I really am fishing for answers everywhere I can at this point.  There is a great website for people with AS that I frequent everyday, but can't find anyone who has had the same experiences with TKR that's why I come back here.  I'm glad to hear your knees are uneffected by the AS it's a very frustrating problem.  You need your knees to function and it's not too easy to do when you can't control them.
Best of luck to you
Cindy

[Jaci]

Cindy,

I think you and I are the only ones here with both AS and arthrofibrosis. Kind of interesting that you mention that AS is attacking your soft-tissues. A recent MRI shows that I have developed what appears to be ganglion cysts in my knee. One appears to be on, in, or attached to my ACL. From what I've read ganglion cysts in the knee are pretty unusual. There has been an increase in the feelings of instability in the last couple months, another weird symptom given the amount of scar tissue I have in there. Makes me wonder if something else is going on.

I had a lot of hip, back and neck pain after my first scar tissue surgery and initially attributed it solely to the CPM. At some point a light bulb went off and I started thinking that the AS might be active again. I had never even mentioned AS before to my GP who I've only been with for a few years. (My previous GP had given me a bad time about it, "If you haven't had symptoms in years, why even bring it up?" What an ignorant jerk!! I'm glad I stopped seeing him.) My current GP did a few blood tests, I don't remember which ones, and said they were all negative for an inflammatory process so the pain was probably not from AS. I didn't pursue it any further or push to see a rheumatologist. I looked on a few of the AS sites, and could find nothing about a possible link between it and scar tissue, other than both being immune related conditions.

I'm going in for surgery #8 in a couple weeks. I'm kind of on a fishing expedition too, trying to figure out why the scar tissue keeps coming back. Frustrating to say the least!

I hope you get some answers.

Take care.

Jaci

[baconbits]

I'm glad I found some familiar ground.  I'm sorry you have to go through more surgery too.  The scar tissue thing will plague us for ever I'm sorry to say.  I'm glad I have a Rheumy to explain all the things my orthopedist doesn't.  Everytime they go in for more surgery the AS which is autoimmune will attack the body due to the tramma, thus, causing more scar tissue.  Most people think any arthritis is just a bone/joint disease but AS takes it up a notch with attacking the soft tissues also, ligaments, tendons, cartilage.  Inflamation levels are different with each person.  Sometimes docs can't detect inflammation with standard blood work.  It is a hands on diagnostic with AS.  Just like some people like myself that have a normal body temp. of 96 degrees insted of 98.6. , the "normal" inflammation level would be actually elevated for me.  My hope for you is to find a good Rheumy and stay with him so he can answer your ongoing questions. 
If you need AS support I'm here and  kickas.org is a great place to go to for daily support and information.
Keep me posted on things.  I find out Monday what kind of surgery we are headed for with this TKR I had 16 months ago. 
Take care
Cindy

[DebbieBe]

I was just diagnosed with AS this past fall.  I was sent for blood work up because I had achilles tendon problems for a bout 6 yrs...knee problems for the past 30 yrs, but when the achilles was just not getting better they sent me to have an RA work up.  I am taking lots of indocin...don't know for how long but it does seem to help...unfortunately not with the knees tho....the knees are a whole different separate story.  Funny tho I really don't have much back problem but xrays did show spurring in the back...so no you are not alone!!  And its great to know that I am not the only one with knee and AS probs

Debbie

[baconbits]

Hi Debbie,
It's good to hear from another AS'er.  Sorry it took so long to get back to you.  I was away for a while on vacation, well actually work week in the mountains.  I'm always sorry to hear of another diagnosis of AS but it is good to know when we are not alone.  If you get a chance, tell me your story and what's up with the knees?
When you have time I would like to hear more from you.
Cindy

[kera4]

Hi! I was diagnosed with "spondylo arthropathy" about 8 years ago, which is similar to AS. It is basically arthritis that attacks the ligaments, tendons, etc.(HLA-B27 positive in blood work). I mostly get it in my hands, lower back, achilles tendons and knees. In 1999 I had bi-lateral release surgeries on both my knees and over the next year or so developed BAD scar tissue around the area. In 2003 I had scar tissue removal surgeries, but have continued to have knee problems. I can only walk 2 blocks, and cannot stand for long amounts of time. I wish I had never had those lateral release surgeries, they caused huge flares in my hands as well as the scar tissue in my knees. Now my hands are under control (I take Enbrel), but my knees continue to be problems. The facet joints in my back cause pain, but I have controlled the pain with injections and RFA (radio frequency lesioning of the pain nerves). There definitely seems to be a connection between this kind of arthritis and scar tissue-very frustrating! Take care, Kera

[baconbits]

Hey Kera, Debbie, Jaci,
Am I glad I put this post up.
I'm not alone and neither are you.
I'm always down hearted to hear anyone else going through the AS thing.
I must say I have found out quite a few similarities though.
Arthrofrombosis, scar tissue, seems to be a huge factor with surgeries in patients with AS.
Jaci- Have you found a Rheumatologist to work with you along with your GP?  I have a Rheumy, a GP, and an OS that all work together to keep me going and it works great.
Other than Jaci does anyone else have a problem with cysts?  I do.
Debbie- the achilles thing ouch :'(I feel your pain bin there done that.  How are you doing with the Indocin?  I had to quit that and all other NSAIDS due to stomach and intestinal problems.  I also found it didn't help the joints just the back.  There is another called Salsaline, not sure of the spelling, that is supposed to be good for the periferal joints.
Kera- One of my 7 surgeries was a lateral release, didn't help either.  Lots of scar tissue too.  I'm glad to hear you are able to do the Embrel thing, I hope it's helping.  I'm past the point, now just on pain meds to keep me functional.
Okay, we found a similarity in the scar tissue thing, how about the cysts?  Any common ground there?  I had several MRI's last week, lumbar, thoracic, and cervical.  Looks like world war III.  Lots of disc degeneration, osteophites along the margins to fuse, even clusters of them.  But one thing I wasn't expecting was a cyst showing a lateral meningocele.  There's that word again, I just don't know at this point if it is the malignant type and I will find out more on Monday.
Girls keep in touch and lets see if any other similarities come forward with these knees and the AS.
Cindy

[kera4]

Dear Cindy, Jaci, Debbie, Hi! I wondered if you have had knee synovectomy and if it helped? I am getting a second opinion from another OS, and he is thinking the constant fluid under my kneecaps indicates problems with the synovium. I am going for a nuclear bone scan this week and will see him 6/12. My regular OS, who I like and did my scar tissue clean ups, did not think I should do any surgery now, just rest my knees/ice/tens machine. In other words no progress at all! Anyway, I am pursuing the second opinion because I do NOT want to live with so much limited mobility. If you had a synovectomy, did it become complicated by excessive scar tissue? I hate to go through that again like it was after my lateral releases. It is so frustrating to know which specialist to believe. Sometimes my rheumatologist and my OS have agreed on treatment, sometimes they have opposing opinions. I think the OS's are sometimes conservative with me because of the autoimmune arthritis-they treat me like I will break. I can't blame them, I do bruise so much after surgery and all that scar tissue. Oh well, let my know your experience/advise about synovectomy-since that is where this new OS seems to be heading. Thanks! Kera

[baconbits]

Hi Kera,
I have not had a synovectomy but I have had several postop patients who have.  None had AS but 2 had RA.  None had any problems afterwards with scar tissue but remember any surgery with AS can and will cause scar tissue.  I know that's not alot of help but you will have to weigh the pros and cons and talk to your Rheumy, he knows best.  I so glad you have an OS that understands your AS and works with your Rheumy.  My Rheumy and GP work great together but my OS is oblivious still thinks AS is a man's desease.  Even after reading my cervical and lumbar MRI's today which were classic AS he still dismisses the it and won't talk to my Rheumy to find out his opinions on anything.  What a mess.
Well it looks like 1 or 2 more surgeries on the horizon with this TKR, I just need to make up my mind and do it.
I hope I helped you in some way.  Please let me know what goes with this next appoinment.
Cindy

[Jaci]

Hello, Kera.

I've had a couple synovectomies, but I think my knee problem is a bit different from your's. My knee problems are related to severe, recurring arthrofibrosis that resulted from an injury and subsequent surgery. We really don't know if the joint lining inflammation (synovitis) was caused by joint irritation from the masses of scar tissue or from some other factor. As I mentioned earlier, I have AS but it has never affected my knees-- it's one of the few joints that was not affected when I had an active case of AS. In fact after my first scar tissue removal surgery, my OS commented that the articluar cartilage in my knee was relatively pristine, which is highly unusual for someone in their late 40's. Two years later, my cartilage is now pretty chewed up-- grade 3 changes in all three compartments-- but that's due to the messed up mechanics from the scar tissue.

Anyway, about the synovectomy-- I have had less general inflammation in my affected knee, but masses of scar tissue still formed after surgery.  My most recent scar tissue surgery was about 6 weeks ago, and the synovium looked good at that point. I've had a few post-op inflammation flare-ups that have been agressively treated with oral and injected steroids. It's too soon to say whether or not scar tissue is forming again, but my knee feels better this time around that with previous surgeries.

The loss of mobility that you're describing could be related to arthrofibrosis (i.e. scar tissue). I noticed elsewhere that you live in CA in the Bay area. There's a great OS at the Palo Alto Medical Foundation named Dr. Colin Eakin. He's very experienced with scar tissue. He did a fellowship with Dr. Steadman who is considered one of the 'experts' in the area of knee arthrofibrosis. It might be worth getting a second opinion from him.

You might also want to take a look in the soft tissue-- arthrofibrosis section of the board. Lots of info on treating arthrofibrosis, rehab, etc.

best wishes.

Jaci

[kera4]

Dear Jaci, Cindy, and Debbie, Hi! Jaci, thank you for the information! I just got back from my 2nd opinion visit with a Patellar Femoral Specialist named Dr. Scott Dye. He reviewed my MRI's which showed fluid under both knee caps, and a nuclear bone scan which had "hot spots" in the patella area. He is 80% sure that I need a synovectomy-he reccommended surgery to see. I appreciate your info about scar tissue-I had scar tissue removed from both knees in 2003, but it has not recurred. At this point my pain is from the patella. I thought about going to see Dr. Eakin, it would not be a bad idea even if scar tissue is not my main problem. Right now my current OS is Dr. George Thabit. He did a good job of removing my scar tissue, but I'm thinking "why didn't he think of this idea of a synovectomy?" It is very confusing when doctors differ in their opinions! Dr Dye did not think that my auto immune arthritis was active in my knees like it has been in my hands. I tend to agree with this because the Enbrel I inject helps my hands a lot, but does nothing for my knees. Anyway, let my know what you think and how you all are doing! Take care, Kera

[baconbits]

Hey gang,
good to see you all working some things out here.
Kera, don't be fooled by the reaction of Embrel.  Just because it is "helping" your hands and not you knees does not mean the knee problem isn't from your AS.  Embrel slows the progression of the imflamation caused by AS but it doesn't heal damage already done.  AS attacks the ligaments, cartliage, and tendons which is noturious for patella femoral problems since there is cartliage behind the patella.  The damage was done long before you started the Embrel and the pain from that will continue whether you do the Embrel thing or not.  Get as many opinions as you have to to make you comfortable with your decision, but, make sure every one of them are truly familiar with the AS.  There are alot of them out there that say they are but when it comes down to it they are totally in the dark.  I'm going through that right now with my OS of 25 years who refuses to acknowlege my AS, saying, AS is a man
s desease, not a very comfortable position to be in right now since I still have 2 or 3 more knee surgeries to go and my AS has progressed alot over the last 30 years and has alot to do with what is going on with these knees.  I hope you find your answers and get this knee issue resolved soon.
Cindy

[kera4]

Dear Cindy, Thanks for your advice! That makes sense, because I had had the two lateral release surgeries a year before I was diagnosed with the auto immune arthritis. Had I been diagnosed earlier, perhaps I could have prevented those surgeries. I try not to think about that...."what if" thinking is not such a good thing. I have an appointment 7/7 with my rheumatologist, and I am going to run this synovectomy idea by her. I probably would not do a surgery until September anyway, when my kids are back in school. I have 4 kids ages 3, 5, 10, and 12, so the summer time is not the best time to recover from surgery! I am also having a radio-frequency lesioning done on my lower lumbar facet joints done next week. I have had it done before and it does help with my lower back pain. Have you ever had that done? Sometimes it feels like managing my joint problems is a part time job (or at least an undesirable hobby)! Take care, Kera