Four weeks of methotrexate and educating my new rheumatologist

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Today is methotrexate day.  And I’m glad.  Todays is rough, I can feel that I’m due for my shot.  Methotrexate works for me, as it does for the many people living with rheumatoid arthritis.  The side effects are far less for me than the pain and fatigue of rheumatoid arthritis.  In the past I have experience severe depression and suicidal ideation on methotrexate, and had a psychotic break while taking it.  I decided to try it again because I am not coping well with the level of daily pain.  I am only taking a baby dose (7.5mg equivalent) but even that small dose does help me.  I intend to increase the dose by 2.5mg every month until I get to the dose that affects my mental health, and then drop it back by 2.5mg.  Hopefully I will find a safe, effective dose for me.

For me, the injections work best. I have less side effects, and due to the greater bioavailablitly of sub cut methotrexate  a 7.5mg equivalent injection is a higher effective dose than 7.5mg taken orally.  So a lower dose is more effective and causes fewer side effects.  See this study 

I had to change rheumatologists recently, because my old rheumy said she was out of ideas, and refused to prescribe methotrexate for me, given my previous side effects.  She offered Imuran, which is ineffective and causes worse side effect for me.

My new rheumatologist declared that he believes I have fibromyalgia based on my non-response to all the RA medications I have tried.  I corrected him that some of the medications had worked for me, but none had got me close to remission OR caused such severe side effects that I had to discontinue them.

He declared that my perceptions were warped due to my fibromyalgia and that I thought my symptoms had improved due to the placebo effect.

I found him arrogant and obnoxious…and wrong.  I told him about the ‘wrong’ part, not so much the arrogant and obnoxious.

I told him I do not believe I have fibromyalgia. I know I have inflammatory arthritis, and I just happen to be a poor responder to current medications.  I told him that there is a significant percentage of patients who don’t respond well.

He retorted that only about 20% of patients have a poor response.

I asked him why he thought that I couldn’t be in that 20%.

He said going on my history and his discussions with my previous rheumatologist.

Sigh.

Doctors have no idea how much damage they do when they discuss patients and put an idea in another doctor’s head.  My new rheumatologist has never even examined me, looked at any scans, just a few lab results (I am completely sero-negative).  My old rheumatologist has biased him against me.

He said he didn’t believe I would respond to ANY medications, which is exactly what my old rheumy said.  She has it in her head that no medications have ever helped me at all. She is wrong. Actemra was miraculous, and then stopped working.  Orencia and Xeljanz gave me around 30% improvement.  And that’s a LOT when you’re disabled by pain.

I told him I’d tried all the fibromyalgia medications and they didn’t help me one iota.  Infact they caused massive weight gain and made me feel much worse on the whole.

He repeated that fibromyalgis is incurable and most patients don’t ever improve. He actually said he ‘gives up’ on patients with fibro.  Okay…

I told him that there are still medications I haven’t tried and I wanted to try them.

He said he would prescribe them, that it would be an interesting experiment for him.  He wanted to see the placebo effect in action he said.  He would show me.

I love doctors who challenge me and try to put me in a lose-lose situation. If I respond, it’s the placebo effect.  If I don’t respond, he was right.  Lose-lose for me, win-win for him.

Deep sigh.

Then I pulled out my phone and asked him if fibromyalgia causes swollen joints. He said most certainly not.  I showed him the photograph of my hands, feet and knees which I’d taken the night before and asked him whether THAT looked like RA to him.

I’ve never seen someone back-pedal that quickly.

He asked me which medication I’d like to try next, and perhaps I was in that small minority of patients who hadn’t responded adequately so far.  Complete change in attitude and he couldn’t whip out his prescription pad quick enough.

I asked for sub cut methotrexate.  He agreed.  He told me he wanted me to fill out monthly surveys to accurately monitor my treatment, because he believed that had never been done in the past. I agreed.  I told him I have detailed spreadsheets of my response to various medications, but my presious rheumatologist never looked at them.

He said he would send out surveys for me to fill out, and that I should stop Imuran, give myself a wash out period and start methotrexate.  So that’s what I did.  I am now on week 4, and methotrexate is helping. A lot. I find it mostly helps banish the crippling fatigue.  I have a lot more energy, and I’m able to exercise harder.

But here’s what he doesn’t’ understand.

When he was describing the placebo effect (believe it or not I do know what that is) he said he could spot it like this. A patient starts a medication and expects to feel better, so they do.  They describe miractulous improvement!  But then the effect wanes. Very soon they are back to where they started.  He said the natural progression of RA was that it flares and remits, so often he gives medication when a flare was about to remit anyway.  And so the patient believes the medication is working, further accentuating the placebo effect. But the body can’t be fooled for long by the mind (he said) and soon another flare hits, and the medication is deemed to ‘no longer work’ when in fact it never worked at all.

 

I have a few problems with this.

Firstly, miraculous improvement. Yes, I do describe medcications as ‘miraculous’ at times. But when you are in so much pain you can barely get off the couch and can’t walk without excruciating pain and when that pain is all over your body, even what he would call a small improve ment (20-30%) is MIRACULOUS to me!

And when I start to feel better, I start tapering prednisone. Every milligram means a longer life for me, so I’ve been told by multiple doctors.  So I reduce the prednisone to where the pain is back again.  Its NOT that the medication has stopped working, and its NOT the placebo effect, its that I have reduced my prednisone dose.

And lastly, my RA dose not flare and remit. Yes, some days are a little better than others, but the pain is constant, it is severe, and it never remits.  So his argument about my disease getting better on its own doesn’t apply to me.

I am still doing better than I was, but my pain levels have increased again, and my energy is flagging. This is because I have dropped 2.5mg of prednisone. I am down to 12.5mg, which is very close to the line where I usually fall apart and start experiencing adrenal insufficiency symptoms.   I am nowhere near as bad as I usually am at this prednisone dose.

Hence, methotrexate is working for me.  I feel like crap but I’m on less prednisone. Simple concept really. One I will explain to him when I see him again, in November.

Next week I will increase my dose to 10mg of sub cut methotrexate.  And see if the side effects kick in, OR if I’m able to reduce my prednisone further.

This will be a fabulous experiment for my rheumatologist, but not for the reasons he thought. I will explain all of this to him, that he should measure my improvement in prednisone milligrams, and not by his typical measures (although those count too).  Hopefully he will be receptive and he will learn something.

This is not the placebo effect.

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