Rheumatoid Arthritis – when you don’t agree with your doctor’s treatment plan

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You’re with your doctor discussing a symptom or a complication or some aspect of your health.  Your doctor makes a diagnosis and outlines a treatment plan briefly.  He or she tells you what you should do, writes a script, brushes off your concerns and shuffles you out the door before you can say “but what about…”.

You don’t like the treatment plan.  Not one bit.  You’re extremely uncomfortable, in fact.  So now what?

While you’re standing there staring at your $100 out of pocket co-pay, your mind is racing and your anger is rising.  Your questions were answered only in the most superficial way, and the attitude was “Do as I say. I know best.”

But its YOUR body.  If anything untoward happens, its YOU who deals with the consequences.  Of course, you have to trust your doctor, but its their job to explain everything fully to you, discuss any points you’d like to discuss, and answer any questions you might have.  Decision making should be shared, with your doctor’s role to provide their expertise and professional opinion along with information about the treatment plan, and your role to give your doctor all the relevant information regarding your health and symptoms.  Your doctor is the expert in medicine, but you are the expert in YOU. Ultimately, the final decision should be yours.

But sometimes it doesn’t work that way in the real world.  Rushed ten-minute consults don’t lend themselves to deep discussion, and you can find yourself hustled out the door feeling unheard and very unsure.

So what do you do now?

This happened to me recently. I saw my pain management specialist.  It was only the second time I’d seen him, at first he seemed empathetic and kind. Not a real talkative guy, but that’s common in pain management docs.  Most of them trained as anesthetists.  Its no co-incidence that they chose a specialty where their patients are largely asleep.  Often ‘bedside manner’ isn’t their strong suit.

Which is fine if you’re putting someone to sleep and monitoring their vitals while they’re unconscious. Not much discussion required there.  NOT so fine when you’re talking with a patient about invasive procedures, surgeries and/or medications with serious side effects and risks attached.  In those circumstances, communication skills are key.

My pain doc decided that my PTSD is contributing to my pain levels, despite the fact that the pain long preceded the PTSD.  He asked if I were seeing a psychologist, and I have been for years. But I am about to change therapists.  He focused on the psychological treatment, which I found offensive, and ignorant of my history. 

Of course, I understand and believe in the mind / body connection.  Pain and depression are interlinked, but it can be a chicken / egg situation in figuring out which came first.  Ultimately you have to treat both, but if you put too high a stock in the psychological treatments, the pain remains under treated. 

Then his next pearl of wisdom was to change my opioid to a different kind of opioid. A longer acting one.  He sold the benefit as only needing to take one pill a day, rather than two. 

Woot!  Yippee!  Let me dance on tables, cos taking that pill every night, yep, THAT’s my biggest problem. Thanks doc, you really nailed it!

This new opioid, hydromorphone is five times stronger than morphine, and I can’t even do the math on how much stronger it is than oxycodone, my current opioid of choice.  Wait, I will do the math cos I’m a geek.  Oxycodone is 1.5 times stronger than morphine…so hydromorphone is 3.33 times stronger than oxycodone.  It only matters as I try to figure out if he’s trying to lower my opioid dose by stealth.  And from his quick scratchings on a scrap of paper, that’s how it seemed to me.  He wouldn’t let me keep the paper, he told me he would write to my GP, and I should go see her and she would write the scripts.  Then he shuffled me out the door, leaving me feeling angry, ignored and unheard.

I was $100 out of pocked and he didn’t even deign to write the script himself. I then had to make an appointment with my GP, for another $40 co-pay.

Not happy, Jan.

So what do you do?

Discuss it with my primary care doc. 

Everyone who has a chronic illness should have a regular GP who co-ordinates all their care, medications and communication between various specialists.  Not an easy job when you have nine different specialties involved in your care, but absolutely essential. 

I saw my GP and she explained more thoroughly.  I misunderstood my pain doc (not surprising since he talks quietly and quickly and tends to tell me not to worry and just trust him).  I thought he wanted me to stop my old opioid (targin) and then start my new opioid (Jurnista) at a dose that equated to a considerably lower morpine equivalent dose.  Given that I am not managing on my current dose, that peeved me off pretty badly.  But, in fact, he is cross titrating the dosages, going down on targin and increasing the jurnista, and I’ll be taking both.  Tapering down on the targin, tapering up on the jurnista.  So ultimately, the dosage should be equivalent.

Ok, problem one sorted.  My bad.  I’m ok with that.

The other problem is I just don’t like this new opioid.  I have tried several other opioids – morphine, buprenorphine, fentanyl, and tapentadol.  Oxycodone is the most effective for the fewest side effects.  Other opioids have either been completely ineffective or had horrible side effects.  Buprenorphine, in particular, messed me up good!  Horrible drug!  I’m not keen to go through that again.

Additionally, oxycodone is cleared through the kidneys, but hydromorphone is cleared through the liver.  Being on methotrexate, also a liver-unfriendly medication, I’d prefer to hassle my kidneys rather than stress my liver further.  My GP stressed that I have to be more vigilant with my ‘monthly’ bloods. It has been three months since my last lot.  Ok, fine.

Then there’s the plain old ‘I just have a bad feeling about this.’

I have no other rational reason for not wanting to switch opioids.  I just don’t want to.  My GP reassured me that its completely safe for me to follow this plan, and she will be monitoring everything closely. I trust her.  My pain doc less so.  I was really hoping he would try to go to the source of the worst pain, my lumbar spine, and recommend a radiofrequency ablation or a spinal stimulator.  And I’m annoyed at having a five minute appointment and being sent away for three months.

Having discussed it thoroughly with my GP though, it will take about 8 weeks to complete the change over, and have hydromorphone at a steady dose. 

I’m still not happy about it, but I really don’t have a choice but to follow this plan.  While it should be my choice, my pain doctor will not treat me further, if I don’t try this opioid first.  It’s not exactly fair, but it is the way it is.

Again, in a perfect world, I could veto this treatment option and insist on a spinal stimulator.  But in the real world, my doctor just refuses, and I have no help at all.  No pain management doc, no opioids.  No pain relief.  No life.

He has me over a barrel, so I will do what he asks. 

This isn’t the first time.  My old rheumatologist used to do the same thing.  She’d suggest a biologic and if I didn’t like it, too bad.  It was that or nothing. I have friends who are allowed to take part in that kind of decision, to choose which biologic they want to try next.  I also had to continue each biologic for 8 months. Most rheums will change after 3 months if there is no response. Not my rheum.  8 months, unless the side effects were life threatening. 

I stuck out 8 months of Humira, despite it causing severe, daily anxiety that would only lift the day before my next shot was due. I’d take the shot, and it would start all over again.  I endured months of methotrexate despite feeling suicidally depressed. I was only allowed to stop when I actually made a serious suicide attempt and suffered a psychotic episode.  When I was in the psych ward on heavy duty antipsychotics my rheumy agreed that the side effects weren’t worth it, and I should stop the methotrexate. I have dealt with rashes, weight gain, stomach pain, headaches, profound fatigue, so many side effects…all because my rheumy held me ransom.  Follow my treatment plan or receive no treatment at all.

Its not fair, but sometimes you don’t have a choice.  You may not have any other specialists in your area you can consult.  You may not have the resources or be healthy enough to travel to see someone else.  Sometimes you just have to ride it out, even when the treatment plan is causing more harm than good.  The doctor has control, and you do not. Even though it’s your body.  Its her way, or get another doctor. 

Which is not as easy as it sounds.  There’s the three month wait, then there’s starting from scratch with someone new, so it’ll be at least six months to get to the same place you are now with your current doc.  That’s IF there’s even another doc in your area who will accept you as a patient.  It’s a long process at best and not even possible at worst.

I can see my old rheumy’s point in that some people do give up on treatments too quickly and I have to admit, I do want to roll my eyes when someone quits humira because ‘the injections hurt too much’.  But hey, its their choice. 

Or it should be.

And me? I will do as my pain doc directs. I will start taking my new hydromorphone dose tomorrow. It’s a Saturday so if this drug lays me out flat and turns me into a dribbling zombie, then at least it’s a weekend.  Chances are, my pain doc is right.  Only one way to find out.

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