Friday, December 6, 2013

Are There More Mice in My Future?

My ongoing issues with this dumb stupid rash were one of the items on my list. And yes, I am balancing my forearm on Lulu's rear. Because she simply wouldn't get off of my lap. 

I made good on my deal with Bratty Inner Child Julia yesterday. The agreement when I allowed her to play hooky reschedule my most recent visit with Dr. Young Guy.

So I dutifully showed up promptly at ten a.m. And realized with horror that I had completely forgotten to bring treats! Christmas treats! Hanukah treats! Winter treats!

My goodness. I'll have to whip something up and take it over there before Christmas.

Anyway, as always, it was a good experience. Even when I bring in a laundry list of wah wah wah stuff, and even while I realize that many things on my list just can't be successfully addressed at this point, still I always leave his office feeling reassured that I will get through this. That we're a team.

And THAT in and of itself is therapeutic beyond measure.

We did have an interesting conversation, however, that I thought I would share with y'all. I had sent Dr. YG a link to Dr. Sarah Schafer's excellent article recently published in The Rheumatologist. During the course of our discussion of the article, I queried him regarding the lack of clinical practice guidelines in the treatment of Sjogren's Syndrome. Here's what Dr. Schafer had to say regarding a wish list for clinical practice:

Clinical Practice Guidelines
  • Create practical guidelines for management, not limited to sicca complex. The Sj√∂gren’s Syndrome Foundation is currently engaged in this initiative.
  • Implement a meaningful disease activity index that includes an assessment of fatigue, pain, and quality of life at every visit.
  • Routinely assess common systemic manifestations, including gastrointestinal, respiratory, cognitive, and neurologic manifestations.

So, I said, What's up with that? Why aren't there some basic guidelines -- like a best practice standard -- in the treatment of Sjogren's? Do you agree that they don't exist?

Dr. YG: Oh, I agree completely. And do you want to know why?


Dr. YG: Because Sjogren's really is an orphan disease. There haven't been enough studies to set those standards for optimal care.

What about B-cell depletion therapy? Hasn't there been more studies proving that efficacy recently?

Dr. YG: That's true. And speaking of rituximab, I've been thinking about your reaction to it (meaning my severe neutropenia after my infusion last spring). If we get brave -- meaning you AND I -- maybe we should revisit the decision we made not to administer it again for you. What happened to you is extremely rare and in most instances, when the drug is administered again, the neutropenia didn't re-occur.


(I should note here that this conversation took place as I had my right bun exposed and Dr. YG was injecting my cranky bursa. Says something about my comfort levels with this guy, I think).

We both agreed that more research is desperately needed.

I left promising to ice and rest my right bun, and mulling over the possibility of re-starting rituximab. It appears that my journey with mouse-created drugs may not be completely over. Food for thought.

Stay tuned.


mcspires said...

I guess it could be one of those "careful what you wish for scenarios, but you did so well before, I would think it might be worth a second chance. You have a great doc!

annie said...

Julia, does this rash appear and disappear like an allergy rash and does it itch, or does it stay permanently on your skin? I often get strange skin rashes that come and go for no reason.

If it worked for you before, maybe it's worth trying the rituximab again, and this time the team knows what to look for if there is a reaction like you had previously.

Julia Oleinik said...

Yes, I'm so thankful that I have Dr. Young Guy.

Annie, I have subacute cutaneous lupus -- which is not the same as THE Lupus. It manifests itself pretty much in relationship to flares of my autoimmune activity: when my rash is really busy, so is my immune system. Seems to diminish with prednisone increase and the riituximab eliminated it all together.

Annette said...

Did you see the medscape article called Sjogren Syndrome: An A to Z Update by Dr Robert Fox. (my favourite Sjogren's guy). I have a link but you need to sign in to Medscape I think. It's a recap of what went on at the ACR meeting.
The first thing I really read about Sjogren's was his many years ago. Strange how you can feel that you have had it forever.

annie said...

Julia, thank you for explaining SCL. I have a better understanding now of what it is. I guess the lupus part is a little confusing.