Hi Possi,
I've been following your concerns and struggle to find a reasonable comfort level over the option of starting on a biologic med, but have hesitated to reply since it really is such a personal decision, ultimately. I can only share my experience starting Remicade, and the thought process that led up to my choice.
Never thinking a biologic would be accessible without insurance, I was a little unprepared when my doc suddenly asked me straight out if I wanted to start on one.
There was some application process for funding, but he seemed confident that I'd meet all the qualifications.
He appeared to anticipate a 'Yes' answer immediately (like he was offering me a life
) and after asking a couple of questions on potential risks, about 3 mins later I said yes... yes! He explained these meds had already been around for some years (>8?) and that some adverse troubles had already been sorted out. Being pre-screened for latent TB was important. He explained that the long term risks were still unknown, but that the benefits ~for AS patients (more so than RA patients)~ were incredibly promising.
For me it came down to weighing the risks vs rewards. To continue on as I was (on nsaid + dmard) I recognised there was basically a 100% chance that my health would continue to decline. My quality of life was sliding downhill, the fusion process was marching on, and retaining an ability to keep working (another year?) wasn't looking good.
I figured the highest risk to my health was to do nothing. Remicade on the other hand, demonstrated very low short term risks, and long term risks were unknown. So in effect I was trading a known negative outcome, for an unknown positive
or negative outcome... and therefore giving myself the only chance at a positive.
I've now been on Remicade for 10 months. It *feels* like the AS switch has been turned off, or more like a dimmer switch turning down. It's exceeded my hopes by far. After 4 days, I was in the least amount of pain I'd experienced in any single day, over the last 25 long years, and it keeps getting better!
I haven't been sick yet, even when my guy developed a nasty cold. I've had one tooth infection apparently caused by a hairline fracture (they felt was unrelated) and increasingly believe that something that feels this *right* surely will prove to be beneficial for me.
We all have such unique factors that weigh into making such a treatment decision; our level of comfort vs fears, our current health status and predictors, timing, the accessibility to various meds, and confidence in our healthcare providers...etc.
Possi, if you're feeling too uncomfortable then perhaps giving yourself more time would be a good plan? Either way, I wish you peace of mind in whatever path you choose for you!
Hugs,
mig
