In regards to my AS, I have been a bit lucky. For some patients, symptoms show up before any evidence shows up in scans. So 5 years ago, my initial rheumatologist knew that my symptoms were classic ones related to AS, so that is what I was diagnosed with.
The AS is the primary reason, tied with the HAE, that took me out of commission when it comes to working and activity. It is also the main reason for being on my pain medication, for using a cane or a walker, for having difficulty with stairs, and for having to quit playing sports - especially volleyball (erosion in the SI joints and shoulder blades means it's not a great idea to be diving on hard gym floors on a regular basis).
Today I had my follow-up appointment with my new rheumatologist to go over my scans.
In my SI joints it shows edema (swelling) and erosion.
This is not good.
This does confirm Ankylosing Spondylitis, which also qualifies me to try a new medication - which could be good.
It is also that tangible evidence that shows people WHY I am in so much pain, WHY I have such a hard time walking/sitting/standing, and also why I have needed to be on pain medication.
There are a few complications... this new medication can reactivate Shingles, so they suggest getting vaccinated. The Shingles vaccine is also a live vaccine so I will have to check with a couple other doctors before getting that. Then, this new med is another biologic but NOT the same as the four I have been allergic to. So I still could be allergic to it... but we will not know until I try it. Then, in people with IBD, it can make the IBD worse - a lot worse. And if you knew me in high school and university when my Crohn's was highly uncontrolled, you may understand why I am very nervous about this possibility.
The good news is that it has been showing really great results in reducing pain and slowing down the progression of the disease. It also works for psoriasis. AND it is a simple (haha simple) sub-cutaneous injection, which I do twice a week with Berinert and once a week or two with Methotrexate - so I am very used to it. And it can come in pen-injectables - so I put it to my skin, press a button, and it does all the work for me. No mixing, no extracting, no filling a syringe, no manual injecting, just button then BAM needle with burning medication being coursed through my skin.
Okay so it's still not a fun thing by any means, but there are some good things about it.
So my to-do list this week includes speaking with my GI guy, bloodwork, potentially getting a vaccine, updating my Hematologist and GI guy of new symptoms and of new medications, order refills of medication, and an appointment with my family doc.
And even though we knew 90%+ that AS is what I has, when you see that MRI result that says "erosion" in the sacroiliac joint - it sucks. And it brought tears to my eyes. Because there was a chance that this pain was due to something else, something more mild.
So... it was a bad appointment and a good appointment. I guess.
Why is it always in the Fall that things get crazy and new medications are brought to the table?!?