Progressively Treating the Disease? Holding back on the big guns?

otaneresp said...
did he prescribe oral or rectal steroids? If you start with ractal ones, these have very little side effects in the short run compared to oral ones.
What are your symptoms?

quincy said...
You do NOT need systemic steroids at this point. You also do NOT have an official diagnosis.

What exactly are the oral and rectal meds and dosage?

q

quincy said...
Stick with that till you see your doc and the concensus here is you don't need the systemic steroid.

By the way, who is your doc in Edmonton?
q

iPoop said...
I believe you are getting ahead of yourself, as you do not yet have a diagnosis. However, I do think it's good to be helpful and educate wherever I can, so I will indulge.

Ulcerative colitis is a chronic, lifelong illness that is characterized as having periods of flares (what you are experiencing now) and periods of remission (where there are zero symptoms). UC is likely an autoimmune condition (or at least an immune-deficiency) where the immune system ceaselessly attacks the large intestine causing inflammation and the symptoms we all know and loathe. The treatment goal is to get new patients into a deep remission where they can remain for 2,3,5,8 or more years sometimes. Everyone eventually flares again, and the goal is to treat them quickly and effectively to return them to a remission as soon as is possible. However, the prognosis is wildly unpredictable patient-to-patient with UC. A good portion of us have a fairly mild case of UC, and we can easily manage their symptoms with the mildest anti-inflammatory medication, like your asacol/mezavant/salofalk, for decades with nothing but a few minor flares along the way that are easily treated (Quincy is a good example of this). Some of us have more aggressive cases that become more severe and spread over time and that necessitates stronger and sometimes even stronger classes of medications (this is my situation). Some of us are non-responsive to all treatments and either rapidly or over the years we find that we must have surgery (NotSoSicklyGirl is a good example), and this represents about 20 percent of UC patients. Flares can last weeks, months, a year, or sometimes multiple years. Flares don't always necessitate stronger classes of meds, sometimes they can be conquered by raising the anti-inflammatories from lower maintenance doses to flare doses and then back again. Sometimes steroids are essential for stronger more severe flares and we can even land in the hospital over a real bad flare.

There is just a lot unknown about UC, including our own prognosis which can be very different person-to-person. We don't know in advance the cards we are dealt from the deck, but hope we have winning hand. Much like in card games, not everyone is a winner, and we might end up with a difficult case of UC and struggles ahead. The uncertainty of UC (sudden urgency, what the future holds) are couple of the bigger issues that can lead to anxiety.