Why didn’t my rheumatologist apply for Xeljanz?

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That is the question. Turns out I don’t mind, because my research tells me that Xeljanz raises blood pressure in pretty much everyone.  And seeing as high blood pressure is my most pressing medical issue, it’s not the drug of choice for me.

When I had my appointment last week, after two weeks of playing telephone tag with the (typically) disinterested reception staff, she explained what happened.

At my previous appointment we discussed Xeljanz.  I’m not keen on this drug. I’m not even completely sure why.  Mostly because it’s the newest thing on the market, and I prefer drugs with a longer history.   Because I am the side effect queen.  Because…I would prefer Actemra or Rituxan.

My rheumatologist refused and told me it was Xeljanz or nothing.  And also told me she didn’t think it would work anyway. She thinks aloud often.  The fact is, I don’t think it will work either.  But I wasn’t ready to give up on treatment and have her cut me loose, so I agreed to Xeljanz.

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Then sometime after that, she decided that my inflammatory arthritis is actually under control and that I have fibromyalgia.

Except I don’t have fibromyalgia.

So I was a wee bit annoyed at her logic. And her omitting to tell me. She just changed her mind. And did nothing. And six weeks later I started calling asking where the script was and then finally after another two weeks of waiting, she dragged me in for an appointment.

She was going to tell me she had decided I have fibromyalgia and my inflammatory arthritis is under control.

But before she could do that I showed her the SPECT-CT scan that I had for my spinal orthopedic surgeon.

The SPECT-CT shows marked update in L3/L4 and my SI joints.  The scan shows exactly where the worst of my spinal problems are.  The degradation of my SI Joints confirms the ankylosing spondylitis diagnosis that she’s always wavered on.  Because I also have rheumatoid disease.  The scan was of my spine, hips and knees.  And my hips and knees showed moderate update, which means definite arthritis on both of those sets of joints.  And enthesitis at the hips.  And trochanteric bursitis. There was moderate uptake throughout my lumbar spine, and even some points of my thoracic spine.  My cervical spine wasn’t scanned. I can only imagine.

Good little scan that one.  Every place they pointed the scanner they came up with inflammation.

So that blew her ‘your arthritis is under control, and you just have fibromyalgia’ argument out of the water.

It was a bit of a moment.

She immediately said that she would apply for Xeljanz.  And gave me a month’s worth of samples.

She again queried how my blood work could be absolutely perfect, and yet I could have all this damage in my spine and in my hips and in my knees. Then she asked why I didn’t get my hands and feet scanned. I reminded her the spinal orthopedic surgeon ordered the scan.  He chose which areas he was interested in seeing.  I suggested that if my spine, knees and hips were all arthritic, that would be indicative of what is going on in all my other joints.  She agreed but started shaking her head and muttering to herself as she does when things just don’t add up to her.

Don’t get me wrong, she is a good rheumatologist.  I’m very familiar with all the treatment protocols, and with the exception of her insistence in Xeljanz, she has done and is doing everything she can.

She is just at the end of her rope.  Nothing works. And right now what is happening is what always happens. And it seems to be happening with many of my doctors.  The treatments don’t work. So…blame the patient. Question the diagnosis.  Question what the patient is saying. Question the pain levels.  Question whether to believe the patient.

It’s a natural response.  But that doesn’t make it right.  I deserve better treatment.  But she is the best rheumatologist available to me.

So finally after much muttering she said she has never seen what my bloodwork is like off prednisone. I have been on an average of 15mg of prednisolone the entire time that I have been seeing her.  So she wants to see what my bloods look like ‘clean’.

I assured her they were normal before I started the prednisone that got me back on my feet.

Nevertheless, her approach is correct. My cardiologist has told me I need to get off prednisone, because it is contributing to my high blood pressure and cardiac small vessel disease. In simple terms I am raising my heart attack risk considerably by persisting with my prednisone use.  So I am tapering off.

My neurologist has given me the same warning with my small vessel disease of the brain, just insert ‘major stroke’ instead of ‘heart attack’.

So all my doctors are telling me I am out of time now.  No more messing around.  They all agree that 5mg is ‘safe’ but would prefer for me to be off prednisolone entirely.

Me too.

So I am tapering.  And I’m doing OK.  But this is how it always goes. I do ok until something knocks me down. A tummy bug, or a cold.  Or an emotionally stressful event.  I go down, and without presnisone I can’t get back up.  But that’s OK.  My rheumatologist has been saying for a long time that she needs me off prednisone so that she can start the diagnosis process from scratch. Start over.  Look at everything from the top.

Because nothing adds up with me. Nothing is as it should be.  I have a rheumatologist, neurologist, cardiologist, immunologist, gynecologist and ophthalmologist whom I see regularly. And none of them can connect the dots.  And all of them comment how strange my case is.  How unusual.

When we were talking about tapering off prednisone, my rheumatologist asked a few times, what I would do if I ‘flare’. And I repeatedly told her the same thing. The same thing I always tell her:  I am always in a flare.  I live in permaflare. I do not flare and remit.  I do not have any days where I don’t have at least 6-8 major joints flaring.  Painful, inflamed joints.   A day like that is a good day for me.  Moderate pain that is controlled by 20mg of targin and 10mg of oxynorm is a good day for me.

I can only think she is so used to the ‘textbook’ definition of patients who have flares and have periods of being pain free, that she just doesn’t understand that there are those of us living in constant pain. In constant ‘flare’.

She has no concept of what my life is like.  That I have 2-4 functional hours in a day.  That the rest of the time I need to rest.  That the pain is not manageable.  Admittedly, there are many days where the dizziness and headaches and fatigue are worse than the joint pain. But the joint pain is always there. It’s just not always my worst problem.

And as for Xeljanz, she is putting in the application. She gave me samples to keep me supplied for four weeks. But she told me not to start until I ‘can’t get out of bed’.  She assured me that Xeljanz will not raise my blood pressure.

But I have decided I’m not taking Xeljanz.  I believe the risk is too great.  My blood pressure has reduced slightly on medication. I’m doubling the dose today, with the approval of my GP, because it’s been four weeks and my BP is still too high.

Xeljanz will boost it up again. I joined a facebook group for Xeljanz users and posed the question.  Many, many people have much higher BP on this drug.  It most definitely does raise BP.  Elevated BP is the third side effect listed in the informational flyer I received. I am not risking my brain or a heart attack because my rheumatologist likes this drug.  I am not prepared to take it. I will just manage the pain.  I’ll live a lot longer that way.

And incidentally, my bout of abdominal pain revealed nothing, except an elevated white cell count.  Elevated leucocytes.  Which my GP told me means I have an infection.  If my rheumatologist were aware of that, she would not let me start Xeljanz anyway. The biggest risk with all biologicals is infection, and I have an infection somewhere in my body. But none of my doctors can find it.  More reason not to take Xeljanz though.

So I taper.  And I wait.  And I’ll figure out what to do when I ‘can’t get out of bed’.  And keep on plugging through my ‘to do’ list in the meantime.

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3 COMMENTS

  1. Ever since stopping Pred I too feel I am in a constant flare. I never have a day where there is no pain. Everyday i need to lay down and rest during the day. Sometimes just not even getting up. I am on 40mg targin and use endone often. Most days i feel the targin is doing nothing. Biologics are out for me because of non stop infections during the time on the biologic. Rheumy told me to go see a ENT. I have tried many different drugs and have had many of the side effects listed. I dont know what the answer is, what I do know is Pred is amazing for all my pain but the side effects are just so horrible.
    I hope some miracle drug with NO side effects is found soon.

    • I hope for that miracle too Kim! Which bios have you tried? I’m curious, is it your choice that you don’t want any more biologicals, because they all make you much sicker, or has rheumy decided he/she won’t risk it? Is this your new rheumy or your old rheumy? And why did he/she recommend an ENT? Do you get head cold or ear infections on bios? I’m sorry, I know I’m being really nosey. Just trying to get inside the rheumies head. Because I think a lot of what happens to those of us who’s arthritis didn’t read the text books, and don’t behave as expected get pushed around and bounced from one specialist to another. I’m seeing an ENT as well, for hearing loss though. Have you had any luck getting an appointment with one? And I’m sorry that you’re in constant flare. It’s not much of a life. Do you feel that doctors just don’t understand that this is possible? That tehy decide you just have a pain sensitisation syndrome so you’re not really in pain…you just think you are. Yep, a doctor really told me that…*sigh*

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