Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Today I graduated from UsPa to AS

Hi Friends
I saw my rheumatologist today and thought I would share my experience. It might be especially useful for people near the start of their AS journey.
I thought I was doing so well on the salazopyrin but it turns out that the disease has actually been progressing (steathily) and today she upgraded my diagnosis from UspA to AS.

Her decision was based on the following x-ray report, where the radiologist graded my sacroiliac joints according to the New York criteria. (Last xray, 2 years ago, I had Grade 0 for the left SIJ and Grade 1 for the right)

The right SIJ margins are irregular, the joint space is mildly widened and there is sclerosis on both sides of the joint, consistent with Grade II sacroiliitis. The left SIJ margins are slightly ill defined, but no definite erosions are seen, consistent with Grade 1 change. There is no ankylosis of the visualised lumbar spine. Conclusion: Asymmetrical bilateral sacroiliitis – Grade II on the right, Grade I on the left.

My bloodwork came back close to normal - low inflammatory markers, decent iron count, but deficient vitamin D.

So where to now? We are increasing my SSZ to 6 tabs a day (3 in the morning and 3 at night) and adding a vitamin D supplememnt, and I am having cortisone shots in my SIJs. Oooh, I HATE needles!

Hugs to all

Felicity

I have had several shots in the SI'S, have you had them before?

They have always worked for me..well so hopefully they will work well for you too.

I know sometimes we all get bummed about this dumb disease but then I try and feel like we have so many more drugs, and Drs. in specialties, tests (like the bone scan) than we did say almost 20 years ago when all this first started for me so I am hopeful that somehow we will all find the right Dr., the right treatment, the right drugs.

Keep us updated,

Lisa

Thanks sweet Lisa
No, this will be my first set of shots. They will be ultrasound guided and thankfully, a big dose of local anaesthetic to go with them. I am encouraged to read that these shots have helped you.

I try to think of this disease in relative terms. I think everyone gets SOMETHING in the end and AS is certainly not the worst disease you can get. All the same, the spondy monster will NOT be on my christmas card list this year.
Love
Felicity

Hey Felicity, that MRI result sounds almost identical to my first MRI about 9 years ago! Same for the blood test results.
SSZ did nothing for me either.
I've never been brave enough to consent to the SI injections. They scare me too much. I'm a big chicken. But I hear they can be an absolute miracle in terms of pain relief.
Should tell you the good news - some docs think this is a mistake, by my more recent MRI showed NO disease activity at all. Totally normal, after a few years of enbrel (and prednisone sometimes).
So, there is hope!
Hugs to you too. Let us know how it goes. Brave girl!

still don't know what kind of inflammatory arthritis i have though the doctors including the rheumy are betting on a spondy due to my symptoms. just had a colonoscopy to see if IBD involved as well, some symptoms in that department as well. going to a spondy specialist who has written some papers on undiff spondy to help solve the mystery.

anyway, i too have had the SI cortisone shots. the first time it was topically injected into the right SI where it was bothering me the most, back in may 2002, just the shot, very topical so didn't need the fluoroscopy or anything else. that shot kept me really good for an entire year.

since then it had been very up and down with the SI, but finally since march 2008, always there to some degree, and progressively getting more bothersome.

so finally more cortisone injections this fall, in september 2009. this time, since it has become very bilateral, sometimes one side, sometimes the other, sometimes feels like both sides, decided on more shots. this time, deep, bilateral, with fluoroscopy. this time the shots helped a lot once again, but only for about 6 months.

didn't feel like going in for shots again so soon, so tried something different. been wearing flector patches (topical Diclofenac NSAID delivered through a patch) over my SI almost constantly since the beginning of april. that seems to be holding my SI good, for now at least. just didn't feel like getting more shots so soon, so wanted to see if there was anything else i could try. thought the patch might be a good try since aleve had helped when i tried it, but i can't tolerate the side effects of edema and gastritis. but the patch, so far, knock on wood, no side effects. don't know if the patch would help if there were more inflammation, but at least for me, it helps.

so for me, two tools in my toolbox, cortisone injections and flector patches.
actually three tools if you include the ice, but wearing ice packs 24/7 was becoming quite impractical!

good luck with the injections, hope you get as much relief with them as lisa and i have.

Hi Felicity

Good luck with your cortisone injections, I hope they work for you.

I have had both X-ray guided and "I think we will stick the needle here" method 8 times total and the guided ones are way better. All of them have helped except the last set. It really made a difference all the other times.

also wanted to make a comment about the D. mine was low and i've been on prescription D for about a year or so now, maybe longer, i've lost track.

just seems like a lot of people here have low D.

i wonder if that is more common with all of us, or if its fairly typical of the population at large?

i've asked my doctors, and my rheumy seemed to indicate that this was another important puzzle for me. but my endocrinologist seemed to think its fairly common in this part of the country (up north, with not much sun in the winters). so, two different doctors, two different thoughts.

so just wondering, if there really is any significance to so many of us having the low D?

Gorgeous Megan
I think I may have fallen a bit behind in your story. Last update I read, you had lost your darling feline and were still fighting the medical system for an elusive porphyria diagnosis. My heart goes out to you, and yet you still had the kindness to relate to my circumstances and offer me 'hope'. Thanks sweetie.
F

Thanks Sue, you have made feel a bit more confident about the shots. I like that toolbox analogy!
Wouldn't you think a girl in Australia of all places could get a decent fill of sunshine? Except I am wary of too much sun because I have a very 'english' complexion and also take SSZ.
I have been reading up on Vitamin D this afternoon and I wonder if it is the missing piece in my puzzle. I think it could be contributing to my insomnia for one thing. Sue, you dont sleep so well either do you?
Thanks for the reply
Felicity

Yay for the guided ones! Thanks Jeff.