Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newbie with Fused SI plus pain and tiredness

How can this be best handled? Hello, by the way. I am new to AS. Just diagnosed yesterday. All the usual emotions are whipping through my mind as I come to grips with this. If I hadn't seen my x-rays with my own eyes, I wouldn't believe it. One SI joint is totally fused; the other is not far behind. My god. So fast.

It all started LAST WEEK! Third attack of Costochondritis, ribs out of place so was having great difficulty breathing, burning bottoms of feet plus ankles. Emergency x-rays yesterday showed complete fusion of one SI joint. The other is showing erosion and 85% fusion. Isn't this just a bit too fast?

What can I do to slow this down? Right now, I take a single Arthrotec daily. One heel burns while the sole of the same foot burns as well. Interesting the other foot is not affected. Just the right one. Ironically my fused SI is on the same side. Is it normal to have fusing, burning, etc. all on the same half of the body with AS?

And again on the same side, my middle knuckle is slightly taller than the other one. Looks almost like more bone is being used for it. I know this is a stupid observation. Does AS make your knuckles larger?

Why do my shoulders crack when I move them? Is this 'normal' for AS? Or is my entire system beginning to fuse or whatever it is called?

Will be seeing my rheumatologist this month and taking along film xrays for him to see. I am hoping he will be able to help me. I do not know what medicine there is for this condition. Such a newbie.

There are time's when progression moves very fast like a freight train. Other times, it slow's down. My experience Magician is that it has affected my total right side at first except for the feet. That includes the eyes as well. Now it is going to the other side.
I know from what I have read, TNF blocker's are the way to go. I am waiting for approval to start them. Nothing else is stopping this. Just be as prepared as you can with information to bring with you and your list of questions. My first Rheumy appt. was for 2 hour's and he listened the whole time. Good luck.

HELLO, Newbie with Fused SI, etc:




Regrettably, no; AS is highly variable and can accelerate under the wrong conditions.



Diet. Antibiotics. Exercise. Prayer. Biologic drugs. In that order of efficacy.



Absolutely; AS is usually asymmetrical.



Yes, but it is usually a temporary inflammation and most often restricted to toes; AS can result in “sausage digits” due to long-term untreated inflammation.



The noisy joints are called “crepitus,” and this a sign of synovial deterioration that will first lead to very slight hypermobility and then inflammation of the bursa could intervene with eventual thickening called “fibrosis” that often leads to fusion, or in the case of shoulders sometimes rotator cuff tears, adhesive capsulitis, frozen shoulder, etc. Yes, it is normal for AS and a very common peripheral complication.


AS is a patient-participation disease that requires near-constant attention and effort by those of us with this affliction. Interest Yourself in Your own health as much as any vocation or avocation/education and You will never regret the investment of Your time and labor that will have benefits both immediately and far into Your future.

HEALTH,
John

Hi Magic,

I guess that you weren't entirely surprised, since one of your doctors had told you AS at some point in your past, but I know it must still come as a shock to you, since you believed they had ruled it out again. What a rollercoaster!

I guess this does sort of make you a newbie, although you are not new to KA!

My guess is that the fusion to your SI joints was probably not quite as fast as you suspect - maybe it just wasn't obvious enough before, to whichever doctor was viewing your previous xrays?

Yep, having one side more affected than the other is normal in the beginning. Symmetry seems to try playing catch-up in later decades.

Some of my knuckles get larger and painful at times, for no apparent reason. Not a stupid observation at all.

Glad you will be seeing your rheumatologist this month. This should give you some time to read up on some of the possible treatment options.

In that order of efficacy? Really John?

lol Ok, well I won't write out the order I'd put them in (since I don't have experience with all) but will just say that there is not a hope that I could manage to exercise without the amazing results that I've had since being on the biologic Remicade. I gained back significant ROM! and haven't lost since Nov 2004!

Just tossing in my 2 cents worth.

hi magic,

as mig said, i smiled at the term newbie, as i feel like i've known you for a while now.

but having a dx to go along with a disease is better than having the disease without a dx. now better drugs options will hopefully open up to you.

the others have given you answers to your questions, so i'll just say: my shoulders "crack" (especially the left side where i have all the upper back problems). lots of other body parts (neck, spine, SI joint, "sitz bones joint", etc etc) and there is no evidence of fusing for me. i know things are right. that "hypermobility" that john talks about, i have that in a number of my joints (ribs and SI the biggest problem, thumbs lately to some degree, knees too if i torque them) and no evidence of fusing. if i really am not fusing and really have undiff spondy instead of AS, then i can say, i know these symptoms are part of my undiff spondy (inflammation) but not evidence of fusing. hope that helps.

Thank you, sue. I am reading through the Anti-TNF posts because I am trying to figure out which one is available in pill form. (lazy me). Also I wonder just how expensive are these drugs and will Health Canada refuse to pay for them?

I used the term 'Newbie' because AS is totally new to me. I know I am supposed to read all the info on the different medications for it but am really leaning towards pill form.

It was the rapid appearance of it which has really frightened me. I was totally happy with the Scoliosis diagnosis. I am totally scared to sleep because I keep thinking my neck is going to fuse. Plus my mind will not stop going over and over every single detail.

hi again,

i'm pretty sure they're all injectables or infusions (remicade, humira, enbrel, simponi) but three are self injectables at home and remicade is an infusion in the doctors office. some respond better to one than to another, some have reactions to one more than another, some just find one more convenient than another. think those are the things to consider. i've not had the option to consider them yet, so only know what i hear others talking about here though. others much more personally knowledgeable on the subject.

but yeh, there's tons of info on those other parts of the forum. but like you, when i first got here, there's so much info, sometimes its hard to know where to start, and how to sift through the info to get the best info.

and its always nice to get current first person account of what works for others / what others like.

and yeh, things can be overwhelming at first. but don't worry, you get to a point where you come to accept it and its not so overwhelming. like when i first found out my liver enzymes had elevated; freaked me out a bit. but then i talked to people about it and got used to the idea. may turn out to be a big problem, but i'm not so freaked out right now, maybe i will be if it comes to that. but it is odd how you adapt.

good luck!

Hi, John. Thank you for your very informative reply!

What kind of wrong conditions make the AS accelerate? I am looking into the diet. Not sure how successful I will be with it. I do not eat a lot of meat or veggies. Eat fruits at times. Gosh, I have a bad diet. I live off of mostly hard candies and junk foods.

I have had frozen shoulder about 20 years ago. Maybe I was showing signs of AS way back then.