Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Knee swelling cycle--anyone?

The same knee joint swells with fluid for the past 2 years but on and off in a cycle of 5 days good (no swelling), and 5 days bad (with the 3rd day being the worst in swelling). It's like clockwork. Also, digestion follows the same cycle (5 days good, 5 days bad). Hbla-27 positive. Cannot find this on/off cycle described by anyone anywhere else!

Does anyone else have this experience???

Hi Armstrong

This sounds very similar to my experience. I had a swollen knee on and off for about a year. The first few months was as you say on and off on a cycle of about 7 days. This was pre dx.

I kept going back to the doctors askng if this was normal. ( they thought at first I'd torn a muscle, then stretched a ligament) I was told it can happen.

However whilst this was going on my crp was getting higher and higher and I spent 8 days in hospital feeling very unwell. The swelling was finally brought under control after 4 steroid injections. I would suggest you get your crp checked if this continues.

Sorry I ran out of room to sign off . Hope the above helps.

Upsydaisy

WELCOME, armstrong:

I have had severe knee edema, but nothing in a five day cycle as You have described.

This cycle, however, is very telling, understanding AS is cyclic and those cycles should last about four days because the agent provocateur has a half-life of approximately 100 hours. Five days is a very reasonable, predictable cycle.

When I had this swelling, it was due to 'septic hip,' from "megacolon," and did not resolve so rapidly.

This knee edema is more common in people who got AS as a result of ReA.

AS is digestion related. You can eliminate even this symptom by elimination of dietary starches.

If severe, a water-only fast could be undertaken for the length of a cycle, but I see the only way to treat this is through strict diet and I very much recommend finding a Road Back Physician to help treat AS with antibiotics, and also I hate to say this but that 'innuendoscope' might be in Your future--need a good gastroenterologist. Honest,

HEALTH,
John

Hey likewise, for me symptons of AS stared in my knees except mine wasn't a cycle, it lasted 3 months before we found my current rheumy. Before that I went to the wrong doctor, an orthopedic, since this is an autoimmune disease.

Initially I had swelling on my right knee, but a week later my left knee started to swell too. Since it was symmetric (both knees) my orthopedic ruled out the possibility of inflammation caused by trauma.

I had so much fluid in there I only had a 5 to 130 degree range of motion (a fully outstretched unbend knee = 180 degree)
There were days when I couldn't even feel my legs at all cause the fluid inside blocked off the circulation. Ocasionally I did wake up in the middle of the night out of pain.

I was literally walking like a cowboy in those olden western movies. When the orthoepdic removed the fluid from both knees (they stuck a syringe into my knees to drain the liquid) I had about 90ml of fluid in each knee. Draining didn't help me, it only gave me temporary relief for a week but after the week was over, the inflammation would come back.

Out of desperation/frustration we decided to part ways with the incompetant orthopedic and we finally found a rheumy who treated the symptoms and I've enever had any swelling of any sorts ever since but even after the swelling subside, my knees never really felt the same as it initially did. It feels very weak whenever I try to jump.

Both my knees are slightly swollen all the time - they never seem to go down completely. You can see the pockets of fluid around the knee cap. I've still got full range of motion but have to watch lateral movements which feel unstable.

A rhuemy can aspirate this (suck out the fluid)but most the time it comes back. Spurs (if its this) also can be injected with steriod squirted on it. your problem would be better identified with a MRI scan. can you get a referal to see an orthopedic surgeon and ask for a "knee assessment"? or at least ask your Rhuemy for some xrays or CT scan? something should show up. this will take out the guess work as to whats going on in the knee joint and hopefully lead you to the correct path of treatment. gl

Hi Upsy Daisy,

I don't think I've said "Hello, and welcome to KA" to you just yet, so,

Hello and welcome to KA!

We're glad you found us and hope you find all the information and kindred souls you need right here in AS-kickin' country. I'm just a bit curious about your post here where you say you "ran out of room to sign off."

What exactly did you mean by that? Do you mean you reached the end of the text window and couldn't fit in that last line? If so, let me pass along to you the fact that when you reach the end of that first window, it will just keep right on scrolling downward as you continue typing! I'm sure there is a limit on the number of characters you can put in one response, but as far as I know, nobody here has ever reached it! And trust me, as everyone here will tell you, I've tried--many, many times!!!

If you meant something else and I'm just being obtuse, then fill me in. Just wanted to make sure you didn't have the wrong idea about something so fundamental so you can key away to your heart's content!

Brad

Hello Luther,

Welcome to KA! We're glad you found us and hope you find everything you need here.

Way, way back in the day, roughly 1981, is when I first started showing arthritis-like symptoms. One of the most noticeable--and most annoying--was fluid build-up on my right knee. I noticed that it was growing stiff and hard to move, then noticed that it seemed to be giving off a bit of heat too. My doc sent me to a rheumy, and right away she told me that the knee had filled with fluid and should probably be drained. I'll say; she took a huge amount of fluid out that first time. I was thrilled, because the minute she was done, my knee felt completely back to normal. "Well heck, that was easy," I thought.

Yeah, I should have been so lucky. Like you, my knee started filling up again like clockwork. It wasn't on a strict schedule as yours is, but it absolutely did start to fill up again within a day or two of being drained, and at least once a month I had to go in to repeat that procedure.

I can offer a mild bit of good news in that, with as much suddenness as it started, the knee stopped filling with fluid all by itself. Since those first incidents when I was 17 and 18, my knee has never needed to be drained again. My docs had no real idea why it started filling up, and no ideas why it stopped.

Unfortunately, it turned out that the AS was just getting started with me. Since those days--I'm 45 now--AS has managed to screw up just about every major joint in my body, including that right knee. In fact, that knee is now completely froze--won't bend at all. Should have been replaced, but wasn't (that is another story that is far too long to retell--leave it at some very bungled communications), but at least it is 100 percent pain-free the way it is now. Plus, there absolutely is NOT any kind of direct correlation between the early fluid build-up and the joint ultimately freezing, so don't worry about that. What you can take away from my note is that, if you are lucky, your knee will simply stop producing the fluid on its own one of these times after you get it drained. In the meantime, Jet did have some good ideas/advice on next steps you could take regarding your problem knee.

Again, welcome to KA!

Brad

Hi Brad

Thank you for the welcome.

My problem I think is that I wrote the message on my iPod, tried to make an amendment and then couldn't get back to the bottom of my post. Some times myipod has a life of it's own.

Upsydaisy