RA Update: Meet JAK

Imagine you have a headache. It’s bad enough that you fumble through the medicine cabinet for your typical pain relief choice.

Now imagine that the bottle of pain relief boasts “Reduces pain up to 20%”.

Ponder that for awhile, I’ll come back to it.

Last week, I finally had my appointment with a new (to me) rheumatologist. I haven’t formed an opinion of him yet…entirely. Communication is definitely better than with the other rheum. He seems to be staying educated & informed on rhemu stuff.

Still, the first treatment option he mentioned was Methotrexate. Uh, yeah. I wasn’t comfortable with Plaquenil (an anti-malaria drug), so I’m definitely not comfy with a chemo drug. However, he went on to tell me about the latest in RA treatments…JAK Inhibitors. He said he attended two different medical thingies for RA in that past year that discussed JAK Inhibitors.

So, he sent me home to do my research on JAK Inibitors. And this is where I come back to the 20% relief I mentioned earlier. I did my research…even called one of the drug manufacturers. It’s still in clinical trials (which he told me), but the news I found was interesting. There was all this excitement in the medical world because the JAK Inhibitor in trial for RA is showing a 20% relief.

I guess it doesn’t take much to excite doctors and pharmaceutical companies these days. Twenty percent? Would you bother to take that headache medicine if it only promised to relieve your headache up to 20%? I know I wouldn’t. I want 100% relief & I don’t think I would even notice 20% less pain.

To be fair, I researched it further and found that the ACR (American College of Rheumatology) has this % rating system. I’m not sure I understand it completely, but this new RA med has a 20%, 50%, 70% & a remission rating. That means that different people experienced different levels of relief at varying levels of dosages. (But it was the 20% relief that had the pharmaceutical company dancing a jig in the 1st article I found.)

Right now, I’m not sure where I fall on the optimism scale for JAK. On one hand, my pain is increasing weekly. But I’m not sure I’m ready for hard-core medications. I am especially not comfortable with taking anything without a plan. I know they want to be aggressive early on, but I just haven’t seen enough…or any…evidence that any of these drugs do anything. So this is all up in the air for me right now…which is fine.

Tomorrow, my regular doctor will be reviewing (with me) my latest bloodwork drawn earlier this month. I’m curious to compare it to last year’s. Then I will review that bloodwork again with the new rheum in about two weeks. He may order more bloodwork. Oh joy.

Worse than the pain is feeling like there are no good choices. No, there is something worse than that. Being frustrated by well-meaning advice-givers who don’t understand that Rheumatoid Arthritis is not “just” arthritis. It isn’t “just” joint pain or inflammation that can be helped X, Y or Z. It’s an auto-immune disease. My body is attacking my body and I am being tormented by all the miserable options to control it or modify it or live with it. And it’s even much more than that…

Anne-Marie

Choosing Joy & Patience

Yesterday, I had to make a journey to New Smyrna Beach. It’s easily 45-minutes (at 80 mph even). Knowing I would be making this trip, I planned to also stop at Sam’s Club. Even though gas prices & couponing keep me from going as often as I used to, we still keep our membership up-to-date. We do enough business to make our $35 membership worth it.

Just like everywhere else this summer, it’s H-O-T & m-ugh-y. Arizona State University once did a study to see if temperature played a role in driver frustration. It does. Go figure. And it was all too apparent yesterday. Each person was clearly in their own private hot & muggy hell and not willing to share their space. And not just on the road.

At some point in my venture around Sam’s, I encountered an elderly lady who was content to be in my way. I wasn’t really in a hurry, but it’s still annoying to be behind the oblivious…and the painfully slow. Still, I waited, trying not to show my annoyance.

I was just about finished loading the back of my SUV when that same slow elderly lady pushed her cart around to her driver’s side door…which was next to my passenger door. Again, she was in my way. I was just about to take my few grocery items to my passenger seat. I thought she was just parking her cart there…too slow & elderly to put it in the corral that was directly behind me. As I loaded my passenger seat via my driver’s door, I noticed that she was loading her passenger side, one or two items at a time from the cart. I have no idea why she was walking around the front of her car to do this, but she was.

As I finished, and prepared to take my cart to the corral (which I ALWAYS do & you SHOULD too because it annoys the heck out of the those of us who would never be so thoughtless to leave the cart just anywhere in the parking lot when the corral is right freaking there!!! ), I decided to do something simply absurd. I sweetly asked this elderly lady if I could return her empty cart for her.

Well, it was empty except for her purse (another big No-No I can’t believe women still do). She was making her way back to the empty cart to retrieve her purse and get in her car. I told her that I would return her cart for her as soon as she was done. I returned my cart and by the time I came back she was just making her way to her door.

“If you’re done, I’ll take your cart.” I said to her. I can’t tell you exactly what she said because I was surprised at how she went on and on to thank me for being so kind. As I took the cart, I noticed how good it felt to be patient with her, to do something nice for her. We had both been blessed.

Now, I didn’t tell this story to toot my own horn. I was in no mood to be nice to anyone in that muggy heat. I had been irritated by this same woman in the store. I had been mumbling unkind and bad words under my breath all morning. I had uttered more than one deep sigh, rolled my eyes, and passed horrible judgments on others.

But for some reason, I choose to show some things I wasn’t feeling…patience, joy, kindness…to name a few. I’m sure God was speaking to me even though we didn’t have one of those long, drawn out discussions where I argue with Him about why I shouldn’t do what He’s asking me to do. It was a quiet and very quick moment from, “Grrr…she’s in my way again and moving slower than pond water.” to “I’ll take your cart for you.”

I don’t know what that means…and don’t know how much to ponder it. I think I learned all I needed to learn in that moment. Christ really does give us the power…His Power, to choose love over all else.

Anne-Marie