Monday, July 11, 2011

How Good is Good Enough?

Nope, guys.

I wasn't at Krispy Kreme, and I avoided Rose's Deli, and luckily the calorie police weren't looking for me. Yet. And thank goodness I didn't buy Mariners tickets because, One: They weren't playing in Seattle this weekend, and Two: Their offense was STINKO. I'm still a fan, but c'mon, team - you're killing me here.

No, I just took a few days to be especially mindless. We had delightful guests for the weekend and I was so busy laughing and visiting that my brain took a holiday.

So now that I'm back to being only semi-mindless, here's what I've been mulling over: I have an upcoming appointment next week with my rheumatologist, and I want to ask him a question. Which is, am I being unrealistic in my expectations for optimal results from my newest medication cocktail to treat my psoriatic arthritis: prednisone, cyclosporine, and methotrexate?

What's my expectation? See, that's the million-dollar question. Ideally, and even I know that I'm not living in an ideal world, I would want my hands and feet and neck to be pain free, no swelling in those joints, and experience a boost in my energy levels. THAT'S how I would describe optimal results from my new meeds.

But, of course, at some level of consciousness, I know that's just not going to happen. So what would be a reasonable expectation, I wonder?

PA, although an autoimmune disease, is not caused by or related to Sjogren's syndrome. And as we all know all too well, Sjs brings joint pain and fatigue and blah blah blah blah blah to the table. How can my doctor and I dis-entangle the symptoms of the two to decide if a set of medications are effectively treating one or the other? Or preferably, both?

I suspect that even with optimal treatment, I'm going to have to become accustomed to dealing with chronic pain. Not surprisingly, I don't want to do this. Before PA, although I definitely experienced discomfort from aching joints, dry eyes, and dry mouth, I didn't have to deal with significant, ongoing pain.

How much pain is tolerable? How much indicates that my joints are being irreparably damaged? How do we balance the equation which compares potential risk from the side effects of big-gun medications to reduced pain and permanent joint damage?

Overall, my current pain level is tolerable, not terrible. Is that good enough?

I honestly don't know.

Image of handheld gold mining scale found on Amazon. Dang, you can buy anything over there.


Christine said...

Hi Julia ~ Hit by yet another new Sjogren's symptom today, I was doing a Google search and came across your blog. I am delighted beyond belief because I have searched and searched for blogs related to Sjogren's for quite a long time now with no luck.Thank you so much for writing about this crazy disease! ~ Christine

annie said...

I have been on plaquenil for two years now, and I can honestly say I see no improvement with pain and fatigue. My pain is changing and I have more head/neck pain and more trouble in my knees, more joint pain and exhausting fatigue. I guess this illness is like a revolving door...something might go out , but then something else enters.

How does one handle so many differing, but overlapping conditions, and the ever increasing amount of drugs used to treat all these conditions?. I think it's reasonable to feel that as one ages, one will be subjected to more health problems and ongoing pain, but it is not reasonable to feel like C**P all of the time at our age. I honestly don't think doctors are able to predict how well your meds will help you in the long run. I've had experience in the past with pills that helped really well, but after a period of being on the medication, the pills stopped working. Are the pills ineffective, or is the illness changing their efficacy?

Julia,I wish you well with your rheumatologist. I also see mine next week, with many questions.

Julia Oleinik said...

HI Christine - so glad you found us! Jump into the conversations here anytme - we all can benefit from each other's experiences.

Annie - You're so right. Who knows what these diseases bring each day?? I wish you well with your rheumy appointment too. We'll have to compare notes.