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