Rheumatologist appointment November 2018 – New rheumy is a liar

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I feel like I should write a book about how doctors treat complicated patients.  I’ll call it “All Doctors are Liars!”

A title like that should get some attention. Unfortunately, it seems to be true.

I had my third appointment with my new rheumatologist this morning. Last appointment he was borderline rude, telling me in no uncertain terms that my RA is under control and that I have fibromyalgia and a pain syndrome.  And that the RA drugs that have helped me in the past were just the placebo effect.

He was condescending, belittled me and dismissed my experience.  He infantalized me with his kindergarten level explanations of what a placebo is (oh really?  I had no idea), and proceeded to tell me that taking opioids is wrong, and they don’t work for chronic pain.

I told him he was wrong.  He said he would take on the challenge, and prove to me that he was correct.  He wanted me to take fibro drugs, which I refused, given I’ve already tried them all and the side effects were unbearable. Not to mention I don’t actually have fibro, so I’m not keen to be treated for a disease I have no signs or symptoms of.

I asked him for methotrexate injections, as these have helped me in the past.  Since my hysterectomy, the only good thing to come out of that has been the absence of PMDD symptoms, deep hormonal depression in the luteal phase of my cycle.  This benefit hasn’t been worth the price I paid, but still. A benefit’s a beneft.

So I wanted to try methotrexate again, and see if it still caused the mood disturbance it has caused in the past.  I had a psychotic break the last time I was taking methotrexate, a suidice attempt and was on anti-psychotics for a few weeks, but as the methotrexate cleared my system, I returned to normal.

Still, it was a big risk to take, but it was MY risk to take, as I explained to him.  He said he would take me on as a challenge, with the aim of proving me wrong, that not only would methotrexate not work, but no RA drugs would work for me.  But he said he’d cycle through every biologic available if that’s what it took to get me to accept I have fibromyalgia.

And that was the one snippet of a miserable consult that made me decide to leave my old rheumy, whom I’ve been seeing for 8 years or so, who has been woefully undertreating me because she’s too timid, and switch to this arrogant, mess of a man.

He said he would prescribe every biologic if that’s what I wanted, and he would prescribe methotrexate.

So I went away and started the methotrexate, which does cause some mood symptoms, but not as bad as before, and DOES improve my rheumatoid arthritis symptoms out of sight. Specifically, I have a lot more energy, less fatigue and less pain.

It does nothing for my lumbar spine pain, which still feels like there is a knife lodged in my lower back and twisted every so often.  And it does nothing for my wrecked shoulder that needs surgery.  And it does nothing for the nerve pain down my left side, nor the partial paralysis of my left leg.

BUT I have less RA pain.  I feel like if I’d been treated properly in the beginning, I wouldn’t be in this mess now.  I wouldn’t have a ruined spine, or wrecked shoulder, or a para-leg.  But I can’t change any of that.  Hindsight is 20/20 and if only I knew then what I know now, and all of those clichés apply.

What I can do is take the methotrexate.

I returned today to report back, and he was shocked to hear the methotrexate is working.  He checked his metrics (he has been sending me monthly surveys to track my response, something my old rheumy never bothered to do) and this also confirmed that I am doing better. You know, in case he didn’t believe me.

I explained that I still have pain, but its much improved, and my energy levels are much better. But the biggest measure of improvement is that I have dropped from 15mg of prednisone down to 10mg.

He was very pleased.

I told him that I’d seen my gastroenterologist about my stomach pain and she thought I may have Crohn’s disease.  She suggested I mention Stelara as a potential next biologic for me to try, given that it is good for Crohns disease and also helps with arthritis.

My rheumatologist disputed this.  He said Stelara was good for psoriasis, not so much Crohn’s disease or arthritis.

I listened and nodded dutifully.

He suggested Remicade, because it’s a first line treatment for Crohn’s and RA.  I told him it was a TNF-blocker and I’d already tried two of those to nil effect.  I also told him remicade has a reputation for weight gain and I’ve already gained quite enough weight that I can’t shift.

He argued with me. He said Humira causes weight gain, but not necessarily remicade. I told him that since both humira and Enbrel, both TNF-blockers had caused me to gain 15kigs which took over a year to shift and only AFTER stopping those medications, I wasn’t prepared to risk it.

He said he didn’t believe I would gain more weight.  He said he liked infusions because they could increase the dose according to my weight.

I said I’d rather try something else.

Stalemate.

He ran through the other options, asking me about which biologics I’ve tried. Again. Don’t you write this stuff down???

He was testing me, to see if what I said now matched with what I said last time.

He came up with Baractnib as another possibility. But then said he would call my gastroenterologist, and see if she thought I had Crohn’s. I told him I needed to have an MRE scan of my small intestine to confirm or deny Crohn’s. He said the scan didn’t matter, he said if shethought I had Crohn’s, then I have Crohn’s. And if she didn’t think so, then I didn’t.  Scans aren’t important, he said.

Okayyy.

He was just stalling. He has no idea what to do with me now, and he doesn’t want to give me more biologics.  He said he thought he’d let me go another three months on methotrexate and maybe that would be enough for me.

I said no, there’s room for improvement, and I was here today to start a new biologic. Or get the application process started so that I could start in the new year.

He said no.

End of.

No.

We stared at eachother. I was clearly supposed thank him now, and leave.

I kept staring at him.  It’s a tactic people have used on me.  I refused to budge, wanting more.

Silence.

Finally he spoke more.  Re-iterating that he would call my gastroenterologist and that in THREE MONTHS he would see me again and decide whether to add a biologic.

I was angry, but clearly he wasn’t going to change his mind.  She reminded me that severe disease is hard to treat.  I told him I needed to taper down on prednisone, to get to 7.5mg, the safe dose.

He said that wasn’t important. That I could stay on 10mg for a few months, years if I needed to.

I said that my endocrinologist didn’t feel that way.  He said she didn’t understand the situation fully, and she would realise that it really doesn’t matter, given how long I’ve been on prednisone.

Every other doctor tells me, lectures me, bullies me, barrages me with the need to get OFF prednisone. And failing that, given my Adrenal Insufficiency, get down to 5mg as a safe long term dose, 7.5mg at a pinch.

This rheumatologist does not give a toss.  Not a bit. He just wanted me to leave and was clear about doing NOTHING until another three months have passed.

I didn’t expect it to be a fun appointment, but I didn’t expect him to be that useless either.  I sat there wondering if I should go back to my old rheumatololgist, and show her that methotrexate is working now.  I forgot to mention to him that I am mow RF positive, further confirmation of my RA diagnosis.  I’m sure he would have explained that away, anyway.

He has zero interest in me.

So I left.

And in three hours I see the local “Dr House”. The immunologist who tackles all the ‘difficult’ cases. The brilliant diagnostician, the guy who fixes all the unfixable patients.  It’s only taken four months to get that appointment, so maybe he’s keen to see me.  I doubt it.  I really can’t face another dismissive, arrogant dickhead doctor.  But I will go to the appointment. I’ll gather my scans.  I’ll explain about the arthritis, the allergies, the degenerated spine, the incredibly 3 million to one bone density, my sclerotic and eroded SI joint.  The Crohn’s.  The para-leg. The minor strokes.  The heart abnormalities.  The hysterectomy, the cervical pre-cancer, the ovarian cysts, the PCOS, the Hashimoto’s.  The hearing loss.  The blood work, the iron, the complement factors, the macrocytosis, eosinophilia, and white cell count.

I better gather all those records.  Fun.  And then I’ll have time for a nap, before I head off to the next medical consult.  Here’s hoping its more successful than the one I just endured.

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