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

I was dxd with RA but after 6 months with it I started getting si joint pain . How long did you(those dxd with AS) suffer with low back pain before you were fused? I read it takes years? Is that true for you all?Thanks

Everyone's different Valsmum. I have had low back pain for years - early 90s. SI pain for even more years - started way back in the early 80s. NO fusing, yet. Also, women present differently to men, and, also depends on the HLA-B27 factor - positive or negative. Positive diagnosed more likely to fuse than negative diagnosed.

There is no one answer fits all ! Devilish to know what may be on the cards. Keep an eye on your own health developments - be aware of changes, better or worse? Renew MRIs, X-Rays on an annual basis - or once in two years? Or...?? Discuss with your reheumy may be the best first step?

But on a diagnostic basis, EULAR suggest it takes 10 - 14 years to get a firm diagnosis - and that is but the start. Hellish blasted disease. But take heart - women present differently to men and fusion is not part and parcel of the disease for everyone.

Hi

I have only 3 disks fused.... my wrists to some extent....

sometimes X-ray looks better, ya, gett that...

I have had a lower back pain every day for 50 years...

now my thorasicks are starting to really throb..

i've had this since 1998, no evidence of fusing, just arthritic changes and bone spurs. I suspect that will be true for me for the future as well.

Never heard of a relative discuss fusing, just all the other stuff.....

But I've been dx'ed undiff spondy, mostly due to lack of fusing,

and the fact that I have the joint inflammation, and the GI inflammation, and a little psoriasis now and then, and other more generic "autoimmune" symptoms like dry eyes, mouth sores, and fatigue when I flare.

I'm also HLA-B27 negative. But do wonder if I have one of the other genes discussed on here....when those tests become readily available, would be interesting to get tested. Though really just for curiosity, because my doctors are treating the inflammatory disease and the symptoms and not worry so much about genes, blood markers, or even radiology reports. But took as Molly said, a dozen years to get to that point. Just gotta find the right doctors.

Hello, ValsMum:

Seven years.

Echo Molly--there are gender and other differences and also our own choices may make more difference than anything else, whether we know it our not.

My neck fused rapidly, after I began taking NSAIDs, but I regret my starchy diet played a role in exacerbating the terrible impact of these drugs.

Good Luck with whatever You do,
John

Thank you Molly, Sue, John and Lon for the input, I tell my rheumy my si joints hurt just as much or more than my swollen wrist, and knees. I just show no change on my xrays but its only been a few years since my RA diagnosis. It would not change much to hear a dr say you have AS too, but at least I would know what the heck is going on inside my body. I have endometriosis too, so it could be pain from that, who knows. I'm thankful that the NSD diet does help me.

Two dics fused by age 42 in neck. At age 52 all dics fused in back. Other large joints have lost mobility. At age 65 I am still able to move around, drive etc. Looking up is a problem but I never miss finding money on the ground good news, if I only had the ability to pick it up bad news..

my dad was fused. "classic" hunched over. He also had arthritic looking hands.
I dont know how long it took. it was also the 70's they had alot less meds to treat AS then.
He didn't like to do excercises.
So I am super vigilent about range of motion stretches as daily as I can remember.
Move it or loose it

I don't have an official AS diagnosis, but my understanding is that fusing is no way inevitable - some folk may never fuse. Particularly if you manage to get good enough treatment early on to slow down or stop the inflammatory process that leads to that extra deposition of bone, that leads to bony bridges that join up and fuse.

Thanks Smed,NNC and CEMC. I often wonder if my sijoints are going to fuse. I guess there is no way of knowing.