8 Years Post Op!




I cannot believe it's been 8 YEARS since jaw surgery! It has absolutely been both one of my greatest struggles and one of my greatest accomplishments.

Last year I posted that I'd been diagnosed with Ulcerative Colitis (UC) and Rheumatoid Arthritis (RA), and this year I add another auto-immune disease to the mix: Ankylosing spondylitis (AS) (pronounced ank-kih-low-sing spon-dill-eye-tiss). This is a form of arthritis that primarily affects the spine; however, Frequency of temporomandibular joint (TMJ) involvement in patients with ankylosing spondylitis (AS) has varied from 4% to 35% (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669964/). Because of my Marfan Syndrom that also causes so much joint pain and back pain, AS has essentially been "hidden in plain sight".

A few months ago I went to my dentist to have some work done and my jaw was very tired and sore for about three weeks. I knew I was pushing it having my mouth propped open for an hour...but I just wanted it to be over- I paid for it (pain, difficulty chewing). I really cannot be propped open for more than 15 min without a solid break. I took ibuprofen, Tylenol, ate a softer diet, and used heat to help my TMJ. Today it is feeling much better.

Now that I know about my AS and it's involvement with the TMJ, I know that I need to really take care of myself. And as part of taking care of myself started taking a TNF inhibitor/biologic. TNF inhibitors are a type of drug used worldwide to treat inflammatory conditions such as rheumatoid arthritis (RA), psoriatic arthritis, juvenile arthritis, inflammatory bowel disease (Crohn’s and ulcerative colitis), ankylosing spondylitis, and psoriasis. They reduce inflammation and stop disease progression by targeting an inflammation-causing substance called Tumor Necrosis Factor (TNF) (source: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/TNF-Inhibitors).

In April of this year, I started my first TNF inhibitor: Humira. My body didn't tolerate it very well. I had a constant fever, headaches, general "feel like I've been hit by a truck" feeling...and it wasn't helping my AS, UC, or RA. So next I tried out Cimzia my body tolerated Cimzia so much more! I hated the injections for both Cimzia and Humira- one was a pen style...which was nice because I couldn't see the needle, but was still painful when going in. Cimzia was a long needle, which I hated looking at, but it hurt less while I was injecting. About a month ago I had to stop Cimzia because my UC was once again not under control.  Last week I started going in for an infusion of another TNF-Inhibitor called Remicade. These infusions are done in a hospital setting in the chemo center. I had an allergic reation while there- was pumped full of benedryl and steroids and Remicade was added to my allergin list.

Where does that leave me now? Well, besides feeling like a lab rat...I start yet another TNF-Inhibitor (Simponi) next week. Hopefully, both my gut and my joints are happy on this med. I don't know what would come after this...although I have read some articles that say "hookworms" could be my cure....(https://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html). I do take supplements, etc. to try and help my gut stay intact through all of this.

All this to say, I am so glad my jaw is stable when I treat it well...and hope the rest of my body catches up! Lots of love & smiles - Mary

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