Rheumatologist and onwards to Actemra – August 2017


Ok, so what happened at rheumy?

After my second opinion appointment, and my MRI, she decided that we’d continue down the seronegative Rheumatoid Arthritis route, rather than the Ankylosing Spondylitis route, and therefore, no Cimzia, instead applying for Actemra.

Good. Actemra is supposedly the closest thing to prednisone in the way it acts in the body, and it is also very similar to Xeljanz, which is the biologic that I’ve had the best response to.

So I’m happy with the choice.

She hadn’t received the letter from my second opinion rheumy yet, I just told her I’d seen him and what he’d said. She was a little surprised, but not disturbed that I’d seen someone else. I simply told her I wanted a fresh pair of eyes.  Another opinion, because I’ve been off any biologic for almost a year and I’m getting much worse.  And doing nothing is just as risky as any of the biologic options left at this point.

She agreed with me.  My MRI didn’t show any active inflammation around my sacroiliac joint, just damage done previously.  However, the steroids can suppress the inflammation, but the pain is still there.  Nothing is conclusive as long as I’m on steroids, but I can’t get off steroids.

Not without a biologic that works well. So back into the loop we go and try Actemra.

It takes about six weeks to get the script approved and the medication in stock at my pharmacy. In the meantime I’m bumping up to 20mg of prednisone and staying there a while.  I need to feel better. I need to function. I need to get back to doing some form of exercise.  I need to live.

The pain levels are too much for me. I can’t take any more oxycodone than I’m already taking. I’m drinking too much wine in the evenings to try and get more pain relief.  Not good behaviour.

Even though prednisone has its problems, it’s necessary for me, and better than the alternative.  And the way I see it, 5-7.5mg is the physiological replacement dose that my adrenals doesn’t make due to adrenal insufficiency, so really I’m only taking 12.5 to 15mg of prednisone, not 20mg…

I know, just let me play my logic games.  It makes me feel better.

She took note of the pinprick rash that I commonly have everywhere. And added in the sinus problems, pulmonary infiltrates, peripheral neuropathy, hearing loss, visual loss and I can’t remember what else. Kidney function. And started thinking possible vasculitis again.  CNS vasculitis has always been on the table, but it never goes anywhere. Steroids fix everything, and I always wind up bumping the steroids.

Like I said, I gotta live.

She did some neuro tests and asked me why my left side is so much weaker.  I told her I don’t know, but I’m working on it with physio.

She examined my skin some more and noticed the redness and thickened patches on my face.  And commented on how much hair I have lost.  My hair is very thin again now.  But given that I’m not on much medication, it’s part of a disease process, not a side effect.  I’m keeping it short to try and hide how thin it is, but clearly that isn’t working.

It’s not a huge deal to me though.  It’s cosmetic.  Pain is a huge deal to me.

I told her about my bone density (again) and what second opinion rheumy had said – possible osteopetrosis.  She then pulled up a lot of my old x-rays and found that most of my bone is sclerotic. She looked at my hips, SI joints, spine, chest (ribs), shoulders…lots of white bone which indicate very dense bone (subchondral sclerosis) and a metabolic disease of bone. It could account for some of my pain.  It could also account for the massive amounts of osteoarthritis that I have at 46.  My skeleton should not look like this, and all of this should have been picked up earlier.

She also re-examined the two year old MRI of my spine.  She commented on the nerve impingement that it showed, and asked me if I still got shooting pains. (Yes).  She then found an earlier MRI, and commented on the speed of deterioration.  So two years later, its likely worse now.

I know. I keep telling her it hurts.  All my facet joints are worn out, all my discs are worn out, I have stenosis (narrowing) and nerves are getting pinched.  She said nothing can be done about my spine, but she hadn’t realised how bad my spine looked. And how dense the bones in my spine are.

There isn’t really a treatment, however. But I guess it’s good that she finally paid attention to it.  I’ve had two bone density scans, each of them showing incredibly dense bones.  My spine is seven times more dense than normal, and my hip four times.  Those results are unheard of.  When they did the scan, they repeated it, to be sure.

My gastroenterologist first flagged it as a sign of disease and not some cute anomaly.  Despite at least four other doctors being aware of it, no one else connected the dots.

Doesn’t really matter. Does explain why I’m such a terrible swimmer though. I hate swimming because I sink.  Dense bones. Makes staying afloat much harder for me.  Trivial fun fact.

The irony of the dense bones is that while they are extremely dense, they often become very brittle, so fractures are a major risk.  Given my arthritis, I don’t do any high impact activities, or play any contact sports so not much to change there. She just wanted me to be aware…my bones will break more easily. Which sounds so counterintuitive, but there you go.

She also commented on my hypermobile knees and elbows. But my hands are stiff. I told her I used to have bendy hands and be able to get my thumb down to my wrist, but I can’t anymore due to the stiffening of the joints from arthritis.  She looked confused, but hypermobility has been flagged before as well, but again, no treatment except for NSAIDS, which I can’t take because I have a stomach ulcer.  Being hypermobile also caused early onset osteoarthritis, so again, it’s useful in that way.

And both my kids are extremely hypermobile, particularly Gamerboy.  They need to be careful of their joints and how they exercise. And they both suffer joint pain on occasion.

But my main problem, as always, is joint pain and fatigue, so Actemra is all I’m really thinking about.  It’s a weekly injection, which is very convenient.  And we’ll give it six months.  If I don’t have a response in six months, we’ll move to Rituxan. And if that doesn’t work, that will be the end of the line.

I’m fine with that.  I’ve been asking for Rituxan for a while, because I wanted to use the biggest guns available. Which is exactly what second opinion rheumy said.  And now current rheumy agrees.  My disease is a mad jumble of lots of systemic issues…but the most painful and problematic for me symptom is pain.  Severe pain.  Today is day two of the prednisone and that’s already an improvement. Tomorrow will be even better.

So, good. Things are looking more positive.  I just have to be patient and wait on that script to arrive and hope that Actemra gives me some relief.


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