Thursday, September 1, 2011

Ever Feel Like a Big-headed Boy?

My regular readers may remember that I have slogged through a month of indecision and frustration, finally reached a decision, only to be trumped by recent lab results (showing liver damage) that demanded I do what I had just grudgingly decided - start a new treatment for my rheumatoid arthritis, in spite of scary(er) side effects.

Here is the latest installment of the soap opera that is my life with RA ...
Part of the preparation for beginning treatment with biologic drugs is to have a TB skin test.  The drugs slam your immune system so effectively that if you have a smoldering infection, it can blossom into a life-threatening situation.  Many healthy people who are exposed to Tuberculosis carry a little capsule of TB that their immune system has effectively imprisoned, rendering it harmless.  So, in the better-safe-than-sorry approach, TB tests are performed to rule out the danger of creating an active TB infection by compromising your immune system.

You have already jumped ahead, haven't you?  Yep - you guessed it.  My TB skin test is positive.  That doesn't mean I actually have TB, it just means I have been exposed sometime in the last 6 decades.  In the past week I have learned (a bit late, eh?) that travel to Mexico, volunteering with at-risk populations (HIV, homeless) and simply living in a state that borders Mexico are all risk factors for exposure.  And that active tuberculosis cases are on the rise in the US.  Good luck trying not to obsess about this the next time someone coughs on you at the grocery store.

So, all RA treatment is on hold.  As the methotrexate wears off, I'm living on pain pills for the increased pain, carefully limiting my activity to avoid triggering a major flare, sleeping a lot as my fatigue increases.  I have my trusty prednisone taper for backup if things spiral out of control.  I'll begin 6 months of antibiotic treatment next week, and at about 6 weeks my rheum will begin to monitor labs to determine when I can start my biologic treatments.

So today I was reading the side effects of the antibiotic meds I'll be taking.  The number one side effect is liver damage.  Wait, that sounds... isn't this what... what the hell?

Ah I see, it's a big cosmic joke.  On me.  But, where is the punchline?  Now I know how Charlie Brown felt about Lucy and that damned football.


Linda P. said...

I am so sorry to read about this latest development and can only imagine the worry you might be feeling as you anticipate the next six months. Since I was also diagnosed rather recently, just last April, I can't contribute my own experiences with something like this. I just wanted you to know that someone cared.

The Rheuminator (Jackie) said...

Thank you so much Linda. I love that you took the time to help me feel less alone. I think that first year is the hardest - we struggle with treatments and acceptance so much. And I hope you don't ever have this experience - it stinks! I'm better this week - starting to appreciate the irony at least. :)

Anonymous said...

Jackie, you're clearly a positive thinker and that's exactly what you need while dealing with this. It all seems to make no sense, i think we just have to find a rheumy we like and trust and hope they steer us in the right direction. My RA is complicated by also having Hepatitis C (which is likely what caused the RA) so my liver is already compromised. Remicade is about all I can take since it's kinder to the liver, but when you look at side effects, egads! I've been on the Remicade/Plaquenil/Prednisone rollercoaster for two years now. I'm happy to say I have some good days so try to cherish them as they're few and far between.
You're not alone! We're all traveling the same road, just that some of us fall in the ditch now and again. Lovely blog! Stay strong and postive.


The Rheuminator (Jackie) said...

Beth, it helps so much to know someone else understands. Still wrapping my head around all the twists & turns, but what a ride (love the ditch analogy)! I have truly come to believe that the most human among us are those who have known hardship and suffering - I kinda like the idea of being more human than I was before RA.