Bye bye Orencia for good

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I just saw Rheumy.  She’s not willing to risk Orencia anymore either.

Good. We agree.

On that, at least.

But she doesn’t know what to do with me next.

Originally the next option was Actemra.  But she’s concerned that my history of serious infections.   I get pneumonia all the time.  I have a fungal skin infection that flares up regularly.  These things mean that Actemra isn’t a good choice for me.  She says the biggest risk with Actemra IS infections.  I have weak lungs, hence the regular pneumonia. I have a fungal infection bouncing around in my body.  She said if those factors combine and I get a fungal pneumonia, that it’s usually fatal in immunocompromised patients.  She thinks the risk is too high.

O-kaaay.

The other drug left to me is Rituxan, which IS chemotherapy.  She almost never uses it.  She only uses it when one of her patients is suffering life threatening organ damage.  So she doesn’t want to go there with me yet.

Luckily Xeljanz has just been approved on the PBS.  So she has another option.  The first biological in tablet form.  She’s not that comfortable with Xeljanz yet, because there is only three years of data on its use.  It’s that new.

But she is more comfortable with the risks of Xeljanz than the other two options.  She gave me the flyer and told me that will be next.

Personally, I’m less comfortable with new drugs. I prefer the ones that have been around for a long time, with plenty of safety data.  If it were my choice, I would choose Actemra.

But the choice of drug is not mine. And in all honesty, it shouldn’t be.  I need to respect my rheumatologist’s many years of personal experience with multiple patients, and her up to date knowledge of all the latest studies, and accept that she will make the best decision for me.  That’s her job.  Not a lot of point consulting a rheumatologist if I won’t follow her advice.

My decision making process is based on fear and gut feeling.  Yep, pretty reliable stuff.

Either way, I won’t be starting anything new for a few weeks.  I am too sick right now.

I explained to her how I have been feeling.  Extreme fatigue, brain fog, dizziness, visual problems, migraines, stomach cramps, fever, diarrhea, zero appetite, often vomiting when I do eat, swollen eyes, swollen lips and depression.  (Gee I wonder why I’m feeling depressed?).

For a few weeks now I have been so tired and worn down that I’ve been couch bound.  Every time I get up, the world spins. That’s improving, I can get up and around a bit now, but I run out of steam really, really quickly.  And back to the couch I go.  And I sleep.

It’s all very non-specific. And it’s crazy, because it’s like everything in my body is breaking at once.  Which just sounds like I’m making it up.

She says I am too immune suppressed.  So I need a break.

I said ‘Great! That’s exactly what I wanted to do. Take a break from the biologicals, and just hang out with methotrexate and arava and prednisone and see how well I can do.  Maybe three months…’

She stopped me right there.

She said maybe four weeks.  She said I can’t stay off a biological that long.  She said my disease is getting worse, and I can’t rely on prednisone.  That I have to get off prednisone.  And there’s no way I can do that, without finding a biological DMARD that works.  Because we’ve tried every other DMARD multiple times.

So we bartered.  12 weeks. 4 weeks.  Meet in the middle – 8 weeks.

She said she feels like we’re in a no win situation.  She thinks my immune system is too suppressed, and yet my disease is not controlled.

My pain levels have been lower, though.  But to get my joint pain to where oxycodone controls it, my immune system has to be suppressed to a level where I am constantly sick.

It does feel a little lose/lose.

So we agree I need a break from a biological.  We just don’t agree on how long for.

Ultimately, it’s my decision though.  And I want to just try and stick with methotrexate and arava for 8 weeks, because for a brief period, I was doing quite well with mtx injections.  I’m hoping I can repeat that.

So we’re just going to wait and see.  She said ‘When you can’t cope with the pain anymore, ring me and I’ll apply for Xeljanz’.

Agreed.

I need to get healthier.

Get stronger.  Give my immune system time to recover.

And kick the depression. Get back to light workouts, though that feels physically impossible right now.

But step one is getting my head in the right place again.  Get your head right, and everything else follows.

2 COMMENTS

  1. It sounds like you are really in a bind. hope that you reach a comfortable solution, and are able to make it through 8 weeks.
    Rituxan has been great for me, but it can have serious side effects for others. Wishing you the best

  2. Hi Joanne, I’m glad Rituxan is helping you! I’ve heard lots of people say same. I’m not sure why my rheumy is so anti it. I just have to trust her…she’s the one with the prescription pad. I’m doing better, getting a bit better every day. Going to start mtx again tonight, and hope to get pain levels a bit lower. Thanks for your goods wishes – same back to you 🙂

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