Rheumatologist appointment October 2019 – baricitinib update and general insanity

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Yesterday I had what was supposed to be my two month appointment after starting Olumiant (baricitinib).  Unfortunately, I haven’t been taking olumiant for two months, for a variety or reasons.

First, I held off on starting it until I’d had my radiofrequency ablation on my right SI joint.  My pain management doctor suggested that. Made sense, because there’s a higher infection risk when taking baricitinib.  Despite that risk being negligible, what the hell. I went with it.

It’s also helpful in that I like to only ever change ONE variable at a time.  Once my radiofrequncy ablation was done, I knew I would have less spinal pain. I didn’t want that to be attributed to baricitinib if it was actually a result of the radiofrequency ablation.  Solid logic.

I explained this to my rheumatologist.  He frowned.  I know what this means.

I kept talking, because I knew as soon as I stopped talking he was going to start lecturing me (I know that face) and I wouldn’t get another chance to speak any time soon.

I explained that, due to my prednisone taper, and changing over to hydrocortisone, as directed by my endocrinologist, I experienced adrenal fatigue, and possible adrenal crisis.  My endocrinologist didn’t agree, and told me it was the baricitinib. As in, the way I was feeling was due to side effects from my new medication.

The only way to prove her wrong was to stop the baricitinib.  Which is what I did.  Long story short, I’d only been taking baricitinib for two weeks as of yesterday, and its too soon to tell if it’s helping or not.

I explained all of this within five minutes, as quickly as possible as I could see his impatience.  Then I paused.

And then my rheumatologist launched his tirade. 

He’s always rude. He’s always arrogant. I get very anxious in the waiting room because I know he doesn’t’ believe me, and he has been blunt about the only reason that he is treating me is to prove me wrong. To prove I do not have inflammatory arthritis at all. That previous medication successes have been the placebo effect.  He made his mind up about me within five minutes, on zero objective evidence, and it is now impossible to change his mind.

He promised to treat me, however. He promised that we could try every single biologic available in Australia, if that’s what it took.  For the wrong reasons.

I wanted to try baricitinib because it’s a JAK inhibitor.  Xeljanz, also a JAK inhibitor, was a successful medication for me.  It’ gave me a solid 40-50% improvement.  However it destroyed my liver, when my liver enzymes hit 20x the upper limit, I had to stop it.   I am hoping that baricitinib, being the same class of medication, might help me, but not cause the liver troubles.

Again, solid logic.

But my rheumatologist was annoyed.

Angry that I hadn’t been taking the medication for the full two months. 

He immediately lectured me about changing more than one variable at a time.  He said if you change more than one thing, he couldn’t tell if the baricitinib was helping.

I told him I understand this, but all of my doctors are forcing me to taper off prednisone and none fo them are listening.

He said we need to get rid of some of your doctors.

He said he’d be HAPPY to go. 

The was the first time he tried to get rid of me.  He has made it clear he doesn’t want to treat me.  This was his way of ending the relationship.

I said I needed a rheumatologist to treat my inflammatory arthritis.

He snorted and continued to rant.  He was treating me like a child, saying I had to understand his instructions and listen to him above all my other doctors, that he couldn’t have made it any simpler, he strongly implied that I was an idiot.

And then he said I had WASTED his time and WASTED this appointment.

And then I could be silent and take it no more. I am always polite.  I am always courteous. Even when I don’t agree, I disagree politely.

But not when I’m accused of wasting my doctor’s time!

I told him I had done nothing wrong, I had only followed other doctors instructions, and that I had TRIED to contact his office and maybe if he answered his messages and gave me instructions when I needed them, this stuff wouldn’t happen.  And that maybe he should talk to my other doctors, I was just being a compliant patient, but its very, very hard when you have four doctors all givein different instructions!

The one thing they all agree on is that the prednisone dose needs to be decreased.  I’m not sure I agree, but I was following advice.

And then I said “its not MY FAULT!”

And I was embarrassed to hear that choked up tone that conveyed to him that I was very upset and he had pushed me close to tears with his ranting. 

He almost shouted at me that the prednisone is not going to harm me for another three months.  That I should have just listened to him, no one else.  And that my taper was stupid, who designed it?  I told him that the professor that I was referred to, to get to the bottom of my complex conditions, designed the taper.  He kinda grunted. I reminded him again, I was only following orders.

He said “All I need is three months of baricitinib, without disturbance from YOU, other medications, or other doctors, and if you can’t provide that, then there is no point me bothering with you.”

I now record all my consults, because I have memory problems, I forget instructions sometimes. And, in this case, its useful to realise just how rude and condescending my doctor really is. Listening back, I don’t know how I sat there and took it.   Then he said that baricitinib was a dangerous drug, with terrible side effects, and that I should rethink if I want to take it at all.  He has tried to scare me off before, that’s his second attempt to discharge me as a patient in five minutes.  He said he thought we should just withdraw the baricitinib, because “the purpose of this appointment was to see if the baricitinib has helped, so you wasted it!”

Again, he was attacking me.  This time I snapped that it wasn’t my fault!   He backed down then, and said he just meant it was wasted time in general, and then asked me what I thought.  I told him I wanted more time on the baricitinib.  He agreed.  But again he tried to scare me with side effects, he said what if it caused “massive side effects, like a huge shingles attack”.  He then said again I hadn’t been consistent or compliant. I said I had, but I had FOUR doctors telling me different things!  And they refused to prescribe prednisone.  He then wrote out a script and said “there. Problem solved!”

I told him that my endocrinologist would no longer see me if I didn’t get to 5mg of prednisone, which is true. He said “get rid of her then.  Prednisone won’t hurt you.”

After a few more accusations from him, we agreed I should stay on 10mg of prednisone for the next 3 months.  He said prednisone may be the answer for me.

I don’t disagree with him there.  My reasons aqree different to his – he just wants to get rid of me.

For me, prednsone improves my life out of sight.  On 12mg of prednisone, I can exercise hard. I can eat solid food.  My RA is pretty much in remission.  My energy improves.  My tinnitus improves, my hearing improves, my blurred vision improves.  Life gets a whole lot better.  I still have my partially paralysed left leg, but that’s a permanent disability now.  And my spinal pain is still pretty awful.  But…I can eat.  I can exercise.  I can live a relatively normal life.

He then said I should stop seeing my immunologist as well, because he was only interfering.  My immunologist thinks I have multiple myeloma, and wants me off prednisone to find out.  My rheumatologist just scoffed. “Get rid of him too.”

He told me I had to choose what was more important to me.

I then talked over the top of him and suggested that maybe all my doctors should just TALK TO EACHOTHER rather than everyone giving me conflicting advice. 

Silence.

He then turned to my questionaires.  And told me that overall my condition hadn’t changed in the last year.  And it all seemed pointless.

I told him I have more energy on baricitinib. 

I told him I have side effects – sore throat, dry cough, worse sinusitis.

He said again we should stop it. I said I wanted to finish out the 3 month trial.  He said OK, but then he said that it’s a very expensive medication and he thought he was WASTING IT on me.

Way to make me feel worthless.  Complete rubbish.

I quietly said again, I want to finish the trial. I am entitled to the medication. Its is on the PBS, I qualify for it, I want to try.

He backed down.  He agreed to continue. He gave me lab test forms to have done just before my next appointment.

He then suggested that I get a second opinion.  I told him I’d had several. He said he’d like one.  That’s the third time in ten minutes that he’d tried to fob me off onto someone else.  A new record!

I said maybe, after the 3 months of baricitinib. 

He then said again that he thought I should just stay on 10mg of prednisone, forever and just see my GP.  That I don’t really need a rheumatologist. 

That’s four times in ten minutes. 

Then I asked him to examine my hands. I told him the swelling and pain were very much there today, and I wanted his opinion if this is inflammatory arthritis.

He looked at my hands.  His face blanched.  My hands are very swollen, red, hot.  He had to admit it looked to him that I was in a bad rheumatoid flare.  He felt my joints.  I flinched on purpose, usually I wouldn’t let that show.

And then his demeanour changed completely.  He said that I definitely have severe RA in my hands.  He said he actually decided he wanted to get some additional scans.  I actually groaned.  I asked him what he was looking for, and could they wait until after the baricitinib trial?  He agreed.  He said he just wanted objective evidence to put on file.   MRI and maybe that bone scan.

We agreed to wait.  I can’t face another round of scans right now. I’m tired.  I’m sick of being sick. I’m sick of being treated like a hypochondriac. 

But his turnaround in attitude once he actually examined my hands would have been hysterically funny, had I not been beaten down so far during this appointment.  Every other time I’ve seen him, my hands have been fine.  I was on enough prednisone to suppress the swelling.

By this time I was feeling pretty horrible.  Like a complete waste of his time, and a complete drain on tax payers money.  Lazy. Worthless. Rubbish.

Doctors should never make a person feel this way.  None of this is my fault. I’m compliant. I’m polite. I’m courteous.  There is a point where I have to argue back, however.  Correct their assumptions.  Demand the treatment I’m entitled to. I’m lucky enough to live in a country with universal healthcare.  These medications are available and they are for people like me. 

And now? I don’t know what to do. His attitude yesterday makes me want to never see him again. That’s what he wants too.  But, if not him, who do I see? I can try going back to my second rheumatologist.  I am very sure Boy Wonder doesn’t’ give a toss.  My endocrinologist is desperate to foist me off onto someone else.  Its hard to have a good relationship with a doctor who has no interest in treating me.

Today I’m going to my GP. Pain medications. I’ll discuss it with him.  Maybe just staying on 10mg of prednisone is the answer. Take that risk. 

IF you take 5mg of prednisone to be the physiological replacement dose for my adrenal insufficiency, it’s really only 5mg of excess prednisone.  Which is an acceptable long term dose.

I’m feeling like this is the best solution.  There are no good options left, but maybe this is the best of a bad lot.

I will see what my GP says…but I’m leaning this way.  It also means I can get rid of my rheumatologist, my endocriniologist, Boy Wonder immunologist.  In fact, I could just see my ophthalmologist once a year, and my GP every month. 

Appealing?  Very.  But is it wise?  Will my health suffer?  No one can answer that.

1 COMMENT

  1. I always think and tell my doctors they are my consultants. I promise to listen carefully and do what is best for me and to let them knwo my decisions. I do honor them by telling them what i have decided. But I always usually follow their advice, but not always. I am anxious to hear if baricitinib works and also the dose amount. Do update us when you have a few weeks and let us knwo how it is working.

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