What symptoms of AS do you experience?
Chronic, long-term back pain is one of the most commonly reported health problems in the United States. Not surprisingly, back pain is also the most reported symptom by people living with axial spondyloarthritis (axSpA).
Other symptoms may also occur with axSpA, such as uveitis, fatigue, psoriasis, heel, shoulder, foot, and other joint pain.
Jaw inflammation and my teeth had shifted a bit
Ouch- Has the jaw inflammation caused any trouble with chewing or opening your mouth, or is it mostly something you noticed from the change in your teeth? -Latoya (Team Member)
I've just started to have severe pain to my right side of my chest and in my right shoulder. My heart is normal but this takes the wind out of me. I just recently had a steroid injection to my neck n shoulder area could that be the problem
That sounds really uncomfortable, especially when the pain is strong enough to take your breath away. I wouldn’t want to guess whether the injection is connected, but it’s definitely something I’d mention to your doctor, especially since this is new and severe. Did this start after your injection, or were you already having some pain there beforehand? -Latoya (Team Member)
unfortunately everything. fully fused 22 years ago at 42. Also all GI diseases available.
Hi Kathy, I need to write a book as the story is very long and including miracles and many things. In 1996, I had a bowel bleed that led to bowel surgery(mar'97), diagnosis of severe Crohn's disease. The month(Nov '96) after the bleed I had my first case of Uveitis. April '97 the Crohn's was back 5 weeks after surgery. Family doctor treated with prednisone '98 Christmas present was severe osteoporosis in spine and hips. Nothing would help me, so I was offered clinical trials for Biologics in 2001. I was offered Remicade -phase 3 trials or CDP-870(Cimzea) which was a phase 2 trial for 3 months. There was an article back then I had read titled Man Saved by a Mouse. He was in arthritis trials and it had put his Crohn's into remission. one difference, Remicade mouse antibodies or the other made with human antibodies. I want with CDP with some assurance if it worked, I could still get it. My concern we realized when after 3 months I couldn't get the med again. However I had gone with CDP it was an injection. It was a blind study only 50 % of patients getting the medication. So the day after my first injection I phoned the study nurse and told her this is an amazing medication, really unbelievable. She's quickly back with the 50/50, you wouldn't know this quick, etc..
So I pipe in, it's not the Crohn's, I have no pain and I can move every joint in my body like I can't remember. Three months of heaven. I was in the golf business and had arranged time off during the first trial, so I played a lot. In October I entered the Remicade study, which resulted in a bad allergic reaction to the medication. The next hope was Humira but had to wait until 2003 when the research trials began.
The Humira helps with the Crohn's symptoms but that was it, no help with the AS. Anyway you can imagine now, this is just a period of time in the journey.
I wish all my best to every patient, stay strong.
RyanThank you for sharing! All the best, Kathy (Team member)
I'm 65, I was diagnosed at 20. I remember it was pretty bad the first couple years but then magically went into remission most of my adult life until the last couple years. I'm going on my fourth month on generic Humira at a huge out-of-pocket expense but my lower back pain has become almost debilitating. I don't think it's doing any good. I have a MyChart message into my rheumatologist but I'm sure any effective drugs will be hard to get approved by Insurance Company too. I'm feeling rather scared and hopeless at this point. My knees are also quite affected and I'm finding the right one locking up and giving out occasionally. Scary stuff.
Wow, that sounds like such a whirlwind with your knee progressing that quickly. And now dealing with your shoulders and hips too - that’s a lot. I’m glad you’re finally on a biologic and hopefully feeling like you have a little more hope moving forward. Fingers crossed right along with you! 🤞-Kimberli (Team Member) So sorry you're having such a hard time! FWIW, Humira did me absolutely no good, so he tried a different type of biologic which includes Cosentyx and Bimzelx (which is what I'm now on), and those work much better. Humira and like biologics are TNF inhibitors, which Cosentyx and the like are IL-17 inhibitors, so they work somewhat differently and one may work better for you than the other type. Also, I didn't REALLY get feeling a lot better until my rheum added methotrexate to the mix, which really helped not only my back pain, but all the peripheral joint pain (like ankles and elbows, for me) as well. Hope that info is something you can take to your next appointment with you -- and best of luck with your journey!
