My rheumatologist and his hostile attitude

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My rheumatologist and I have what I call a hostile relationship. It’s not physically or verbally combative, I liken it more to a ‘hostile witness’ on the stand in your favourite legal thriller.  It’s a loose analogy.  He’s treating me but he doesn’t believe in the treatment, or my illness it seems.

In short, he is trying to prove that no medication will work for my inflammatory arthritis.  In fact in the beginning he even doubted that I HAD inflammatory arthritis, due to a lack of erosions on x-ray.  The other reason he doubted my diagnosis is because (in his opinion) no medication in the past has shown much benefit. 

He is wrong because there are medications that have helped, just nothing that has ever gotten me close to remission.  I am still happy with improvement, however.  I’d much rather have 40% improvement than live in constant agony, 40% is the difference between a semi-functional life and complete disability. Improvement is worth it, even if its nothing like remission.  That’s just common sense. He, however, disagrees.  He says these medications are too expensive to be wasted on ‘just a little’ improvement.

Um…what? I paid my taxes. I’ll take the treatment that everyone else is entitled to, thanks.

Regarding erosions, the only place I have erosions is my SI joint.  I haven’t had x-rays in several years, so this could have changed, but I doubt it.  My immunologist explained to me why.  I have extremely  high bone density.  My bones are 7 standard deviations more dense than the average person of my age.  This means they are super hard.  This also means that erosions aren’t going to happen.  It’s a one in three MILLION finding.  And anything higher than 2.5 standard deviations above normal is defined as a disease process.  But it’s a disease process that seems to be working in my favour,  What it means in practice is that I have lots of osteoarthritis (cartilage is soft and will erode before bone) but only a few bone erosions.

Makes perfect sense to me.  My rheumatologist however will not listen.

I have explained to him over and over that some medications have helped, he says it’s the placebo effect, because no medication works ‘miraculously’.

‘Miraculously’ is how I described Actemra.  To me it WAS miraculous. I went from largely bedridden to jogging on a treadmill again.  And this happened in around 4 weeks.  Miraculous. To me.

Then…it started to peter out.  By month six, I didn’t feel it was helping much at all anymore.  I was still better than before I started Actemra though.

But my rheumatologist is very simplistic.  He hears ‘miraculous’ and thinks ‘exageration’.  And he hears ‘stopped working’ and thinks ‘placebo effect’.  I have read (and experienced) many accounts of starting a biologic, it works for a while, and then seems to stop working.  It’s not unusual. It’s not necessarily a ‘placebo effect’.

Now that methotrexate has shown clear benefit for over 8 months, he has to admit that this is not a placebo effect. Except he won’t admit that, because his professional pride (read: arrogance) prevents him from admitting he may have erred in his judgement.

Still, his competitive personality works in my favour, because he promised we would try every single biologic just to PROVE to me that none would help.

It’s a weird relationship. It’s not a good one.  But he’s the only rheumatologist I can see, else I would have been long gone.

Back when I restarted methotrexate I had to beg him for it, because it has given me severe side effects in the past.  Since I have now had a total hysterectomy and oophorectomy and no longer have the hormonal shifts and deep depression that my hormone imbalance used to cause, I wanted to try methotrexate again.  And it has helped enormously.   Again, I’m using an exaggerative term.  But it has allowed me to drop around 5mg of prednisone.  That is an ‘enormous’ benefit to me, and my long-term health.  I keep explaining to him that I just speak that way.  That when you’re feeling absolutely terrible, you can’t walk, you’re almost bed ridden every day, when something allows you to go back to spin classes, that’s ‘miraculous’, ‘fantastic’, ‘amazing’ and all those other words that I tend to use. 

He would prefer I just rated it in percentages.  E.g. methotrexate 50% improvement.

Ok, I try.  But he’s constantly looking for a ‘gotcha’ and constantly trying to find the proof in what I’m saying that I don’t even have inflammatory arthritis.  Or some other inconsistency.  Or a lie. 

When I first came to him my inflammatory arthritis was reasonably well controlled by prednisone.  Now, with my prednisone taper, the inflammation has come roaring back, and there is absolutely no doubt that I have RA.  The swelling is obvious and very visible, even to him. But he’s still dismissive. 

This is what I mean by ‘hostile’.

I have been seeing him for around nine months.  The only thing he has prescribed for me is methotrexate.  I only continue to see him because he promised he would prescribe any biologic I wanted.  He lied about that. 

I wanted the new JAK inhibitor, because xeljanz gave me 50% improvement.  It makes sense to me that another Jak inhibitor might do same. I had to stop xeljanz because it sent my liver enzymes to 20 times normal.  I had hepatitis for three months…and then my liver recovered.  My (at the time) rheumy didn’t believe that xeljanz had been the cause, but I felt it was.  I restarted Xeljanz, within a month my liver enzymes were double normal.  I chose to stop xeljanz. To this day my other rheumy feels that was just co-incidence.  I don’t. It was clearly the xeljanz.  I wasn’t prepared to risk my liver.  But a new Jak inhibitor?  That’s obviously a good choice, though I will be monitoring carefully.

Last appointment I had to beg for baricitinib which is the newest JAK inhibitor.  I had to make a case demonstrating my reasons for wanting it.  He wanted to give me remicade, given that I have inflammatory bowel disease symptoms.  Remicade is good for arthritis and for bowel disease.  But remicade is a TNF inhibitor. I have taken two TNF inhibitors previously, and neither did me any good. Both caused massive weight gain.  I’m not prepared to take another TNF inhibitor, and the biologic prescribing guidelines agree with me. It’s not likely to help.  I felt that he only wanted to prescribe it because he believed it wouldn’t help and that would prove HIS point.

Hostile.

But my logic for baricitinib was sound, and finally, he agreed. Though he noted that he didn’t believe I would get any benefit. He had to throw that in.  He told me what a dangerous drug it is, and how silly it is to take something like that, that could do me actual harm.

I sat and listened to him.  Reminded myself he is the only rheumatologist I can see without travelling 4 hours by bus.  I have to put up with him. 

I am a very complex patient.  I have multiple co-morbidities (cardiac syndrome X, lung nodules, inflammatory bowel disease, high blood pressure ). I have a bunch of unrelated diseases (Hashimoto’s, eosinophilic esophagitis, cholinergic urticaria, adenomyosis, endometriosis, polycystic ovarian syndrome, multiple allergies) and I have a bunch of weird symptoms and findings (hearing loss, tinnitus, extremely dense bones, peripheral neuropathy, macrocytosis but normal B12 and folate levels, multiple tiny strokes or possibly demyelination in my brain).  I can’t eat solid food, in fact I have been living on fruit and vegetable purees, with some well-cooked chicken, or occasional beef for three years.  As the prednisone taper continues, I can eat less and less.  Even pureed sweet potato causes me problems now.  I have adrenal insufficiency from years of prednisone use.  My spine is extremely degenerated. Severe osteoarthritis of the spine – spondylosis.  Marked facet joint arthritis at all five lumbar levels, and minor throughout the thoracic, moderate at cervical levels.  All five lumber disks are either herniated or compressed.  I have several compressed nerves in my lumbar spine and I have complete compression of the tibial nerve at the S1/L5 nerve root, which has caused total paralysis of the tibial nerve, leading to numbness and complete weakness.  I can’t push off when I walk. I will never run again.  My left leg is partially paralysed and I have a pronounced limp. And THAT is the disabling symptom.  My arthritis once was disabling, but it is not now.  Methotrexate has put me back in the ‘severe’ category rather than the ‘disabling’ category.  I have a bunch of neurologic symptoms, which is the reason why my previous rheumatologist decided to no longer treat me. She didn’t know what to try next and she was convinced that I do actually have multiple sclerosis, despite the lack of lesions in my spine. 

My inflammatory arthritis is definitely there, but no one’s really sure what type it is.  My hands and feet are swollen and painful and my arthritis is symmetrical, which points to RA. I have both small joints and large joints effected.  I was seronegative for over a decade. Now my RF is low titre positive.  My anti-ccp used to be positive, but last time (over three years ago) it was negative.  My spine is my worst pain and I have erosions at the SI joint and sacroiliitis.  Grade two by the New York scale, so that points to Ankylosing Spondylitis. I have dry, thick skin patches that might be psoriasis, but no one will bother to take scrapings to be sure. I have a range of systemic disorders (Raynaud’s phenomenon, difficulty swallowing, a lot of weird rashes, impaired kidney function) which sends us right back to Mixed Connective Tissue Disease.

Complicated.  Lots of doctors don’t want to touch my case.  I have too many doctors, I call it the doctor-go-round.  I got to my rheumy, who sends me to my gastroenterologist, who sends me to my immunologist, who sends me to my endocrinologist, who sends me back to my rheumy.  Roundy roundy. And that round takes about a year to get back to square one, due to the wait for appointments.  No one wants to treat.  And any symptoms that don’t ‘fit’ their plan, they just put down to psychological problems. 

Hostile. 

But most of all, my rheumatologist.  I dread going to see him, because I know it’s going to be a battle.  I go in knowing exactly what I want and having a list of facts and reasons why.  Sometimes I win, sometimes I lose.  For the moment, I’m pleased.  He has applied for baricitinib, I am waiting on the medicare approval.  Next week I see my immunologist and I will check with him to ensure that starting a JAK inhibitor won’t mess with his plans.  He’s very non-communicative. But that’s a whole other blog post. 

In the meantime, I wait.  But at least I wait with hope.

1 COMMENT

  1. Neen, if you get baricitinib I will be excited to hear how it works and the dosage. It is new here in the US as well, but the FDA denied Lilly’s petition to approve the stronger dose. So we have one dose (3MG I think).

    I hope if you are approved it works out as you hope. I have not heard a thing about how people like it or not. I am excited to hear about it.

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