Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How long did it take you to fuse ?

Studies have not proven the influence of TNF-blockers on fusion though.

Mine progressed with an obvious loss of ROM right away (mostly due to pain), with signs that SI fusion was underway, enough for a comparably quick diagnosis after just 2 yrs of symptoms. This was followed by an obvious loss of height in my 20-30's.

After that, it never occurred to me to ask for xrays to be repeated - I knew the pain I was in, and to have xrays would only confirm what I was busy trying to deny. (I'd semi-convinced myself that despite the non-stop pain, I might escape fusion. Seems a silly thought in hindsight.)

Sometime, early 40's or so, I had a full set of xrays taken to assess whether I'd be eligible for a biologic. (The rheumy suggested it was possible I was too far progressed! A thought that had not occurred to me.) Turned out that my SI were solid, lower lumbar affected, syndesmophytes lower to mid spine with a bit of fusion in my neck. And hip joints somewhat damaged.

Still, some of the loss of ROM was not from fusion, as I did gain back quite a bit of flexibility and range, after some time on Remicade. Best. Med. Ever. (for me!)

Turns out there is a Santa Claus!!!

Yep, we are all different. Prognosis is tricky to guess with AS. Considering lifetime exposure, limiting xrays as much as might be sensible still seems like a smart plan to me.

I also basically believe that for those of us who do have fusion, that it was not due to a lack of moving.

now you are in your seventies, what do your latest x-rays show?

How painful was it? Crippling or just discomfort?

I experience mild discomfort now and loss of ROM but not real pain.

I'm thinking that since I was caught fairly early I might escape more serious fusion...

I have moved it but lost it anyway. I can't agree with the move it or lose it theory.
My arm has fused at 48 yrs. the humerus has moved forward and they said it is adhesive capsulitis.
My physical therapy started and I noticed they are asking me to do less.
Instead of six minutes of this and that they cut the exercises in half.
Went from an hour of them stretching me to fifteen minutes.
I don't know what they are thinking, lost cause perhaps? I have lost even more ROM since I began therapy 2 weeks ago.
I guess time will tell.

Ok ok, verrry funny Mr. Clot!!


Am younger than you.............. so there!

Hi Wilhelm, pleased to meet you!

Mine was more crippling than discomfort; the kind where you can't hide it because limping is pronounced and a gentle hug would make me scream. Beware the distant uncle who hasn't seen you in 3 yrs! (On a 1-10 pain scale, I'd generally say 5-8 was my norm... 5 being a pretty good day, 8 being not so tolerable, and 3 a rarity.) That was before Remicade. After Remicade, 0-2!

While pain can be an obvious gauge, there are some few people with AS who fuse with comparatively little pain. My brother's SI joints are fusing, enough to show on regular xray, yet he has never experienced SI joint pain.

Loss of range is also telling, yet some loss can be due to stiffening tendons and ligaments and does not necessarily mean fusion has occurred. I think the most accurate predictor of future fusion is signs of vertebral degeneration and bone growth on a current xray or MRI. In other words, if it is already happening then it will most likely keep happening.

While I wouldn't let your guard down (since AS is a progressive disease), on a brighter note it is very positive to have caught it early, and with more research and newer better meds in the pipeline, I think you have good reason to be feeling optimistic!!

Good luck - and glad to have you here posting with us!

Hey Elmer,... perhaps they are recommending less physio in terms of time and reps, because pushing too hard can in some cases aggravate the inflammation and only leave you feeling worse. Maybe they are trying to find the appropriate level and will begin to increase from there? I don't know - I'm just guessing.

Sounds like a good question to have a conversation with them about. Easy does it, strikes me as a good plan!

Hello, Wilhelm:




It all depends upon Your behavior, rather, that behavior which dictates the aggressiveness of AS: There are certainly things we can do to accelerate this disease and absolutely other/opposite things we can do that will have the reverse effect.

In fact, the stage before actual fusion is called 'fibrosis' (and it limits ROM as a 'preview' of what will someday become permanent skeletal damage) and Professor Ebringer suggested, through proper treatment (and this is mostly SELF-treatment through dietary methods), we could turn the clock back about two years. Of course by the time I heard this I needed TWENTY years taken off, but it is a personal decision others have now that I regret not having.

HEALTH,
John

I have loss of range in my neck only. My last x-rays 3 months ago showed a perfectly normal spine, neck included.

I don't know what's causing the neck stiffness, probably a lot of combined stuff, inflammation, muscle spasm and so on.

Can stiffening tendons or ligaments be "un-stiffed"? I've been that way for about 3-4 years now with no progression, good or bad. I stretch every day. It seems to be wee-bit better after two months on Enbrel but still about only half normal ROM on both sides (strangely, on the left side I can push it to almost normal ROM).

It sucks. I'd just like to keep what I have for as long as I can. I'm 27 now. I don't want to end up with a totally frozen neck too young. In my 40's I don't care, but before that it just attracts unwanted attention.