Trust your neurologist and life without rheumatoid arthritis medications

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I have been quiet on social media for all the usual reasons.  But the bigger reason is this:  I have stopped taking all my inflammatory arthritis medications, except for prednisiolone.

I have written blogs about it, but been so busy with other things, that I  didn’ psot them.

Way back, over six months ago, I saw a new neurologist, who actually stopped an dlistend to me.  Who gave me a proper physical and electorphysical exam, and who ACTUALLY reviewed my old scans and other tests;

After about 30 minutes, he told me he was quite certain I have a form of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) called Chronic Inflammatory Sensory Polyneuropathy (CISP). This means my sensory nerves are primarily involved and my motor nerves, less so.

But the disease is painful, disabling, and the cause of my progressive muscle and strength loss in my legs.

I have seen four other doctors about my leg weakeness. And experience the usual…Hmmm, that’s strange, all your tests are normal!

My rheumatologist and my neurologist kept bouncing me back to eachoether.  They each ordered a set of standard bloods, and said ‘nup, not my problem, you need to see a neurologist;

Who did the same and said ‘nup, not my problem, go back to your rhuem’

Who then sent me back to my neurologist.

Except, on the advoce of my GP, I saw a different neurologist.  One who listened.

The other two didin’t listen, because they both had the same attitude:

“well, you’re already sick. You’re already disabled…what do you want me to do about it?”

They could not grasp that losing the strength in my legs was concerning adnd that I want to retain the function in my legs, tehnak.  While I am a part time wheelchair user, getting around in a wheelchair is much harder than walking. SO I will often choose to endure severe pain and walk, rather than take the chair. 

Why? Because the world is not accessible, especially if you’re navigating it alone.  And getting the wheelchair in and out of the car is exhausting, despite being a very light wheelchair.  Fatigue is a big issue, strength is a big issue. If I use most of it getting a wheelchair into my car, it kinda defeats the purpose OF the wheelchair.

But I digress. As I usually do.

My new neurologist believed he had the correct diagnosis, and it’s a notoriously difficult disease to diagnose.

When I retuned for my six month follow up, I was supposed to have had a muscle biopsy and a nerve biopsy. But these hadn’t been arranged. I thought I had ‘fallen through the cracks’ as does happen from time to time.  He’ a very busy doctor, but dedicated. He works on Saturday mornings because he has so may patients to service.

When I saw him he was different. He’d had second thoughts. 

I was telling him that I am getting worse, and losing strength fast, so please, can we start treatment?

And he was saying there are a few more things he needs to rule out first.

This would be perfectly sensible and an excellent idea, and I would normally be happy with that.

Except for two things:

  1. 1. Six months have passed already and I am deteriorating.
  2. 2. I am losing strength and feeling in my legs.  Fast.

And now I am starting to wonder if he believes me. 

I’m trying not to think this way, but having been dismissed by so many surface-level doctors in the past, its hard not to.

I was so excisted to have a doctor who believed me, it felt like winning the lottery.

Now he wants ‘just a few more’ blood tests.

They are all expensive blood tests and the kind that take severe weeks to get the results back.

He said he’d discussed my case with his colleague, and my heart sank. I consulted his colleague three years ago. He was dismissive, and told me basically I was making it up….exagerating. Nothing physically wrong with me.

So this same colleague is not going to admit he was wrong.

Then my neurologist asked me about the medications I had taken in the past, leflunomide in particular,because it can cause peripheral neuropathy.

I told him yes, I had taken it. But I already had neuropathy at that point.  And I can’t remember if it made it worse, or not. But I had stopped it because of the neuropathy and the potential that it could make it worse.

And then I told him I’d been thinking about ALL my medications – at one point I was on 17 different medicston – and asked if maybe I could stop my mediations for a  whjile.   IF maybe this was some rare side effect, or long term outcome of my medications.   And given that I am taking 25mg of prednisone, I felt like the prednisone is doing all the ‘heavy lifting’ and maybe the other inflammatory arthrisit medications weren’t doing much now, anyway. 

He told me he;d been thinking exactly the same thing.  That maybe it was worth stopping some medications and seeing what happened.

So that’s what I did.

That was four weeks ago.

Last week my arthritis started flaring.  I was surprised, and almost happy to see that my medications were doing something.

I had been on methotrexate, xeljanz and plaquenil and of course the prednisolone.  I have been on some combination of RA meds for twenty years.  Taking a break was a very appealing idea.

I take naprosyn occasionally still, no more than once a month, on the worst days.

I am still taking metformin, thyroid medication, and oxycodone for pain.  I have testosterone cream I use for menopause symptoms.  And that’s about it. I am on less medicaton thatn I have been on in decades. And that part feels good.

NOTE: Never stop or change your medications without talking to your doctor!  I am not advocating for this or recommending this!  I stopped my meds in consultation with my neurologist and GP.  I didn’t bother telling my rheum because he lost interest in me years ago.

It’s been interesting feeling my arthritis coming back. I have joint aches every day, usually as I start to get tired.  Its not severe, my arthritis has been pretty well controlled for many years. JAK inhibitors were amazing for me, and changed my life, and my arthritis.

But now? The ache is deeper.  And there is swelling. My hands and ankles are often swollen, sometimes my ankles disappear entirely.   The biggest difference is when I put pressure on my hands, if I lean on my hand, or use my hand to push off something to get up, there is sharp pain that shoots up my arm.  Its still not severe, its moderate.  My joints feel ‘weaker’ because they hurt when I try to lean on them.  And my grip strength is less and gripping something hard causes pain now.  Again, not severe pain, mild.  Maybe even discomfort. But it wasn’t there before.

My knees ache more, and they have the same shooting pain if I put pressure or weight on them.  My hips have returned for some fun as well, I often have a low-grade ache, that gets worse when I start to exercise, but gets better five minutes in to my workout (walking).  

So that’s interesting. 

I’ll be interested when I’m due for my next lot of standard bloods in a few weeks, to see if my inflammatory markers are different.  It has only been four weeks, I’ll wait at least four more before I get more bloods.  I get so sick of getting bloodwork done. Its not an onerous thing, the lab is five minutes away and the wait is usually short.  I just hate doing it. Not even sure why.  But I wonder if my bloodwork will be much different off meds than on.

Probably not, my inflammatory markers are usually normal.

But it is an interesting experience.  I kinda want to go see my rheumatology, so I can show him the swelling. But it’s not worth the three hours and $200 it would cost me to play ‘Told ya I have arthritis!’

I’ve done it before, anyway.  About a year ago I had impressive swelling on a day I was seeing him. It changed his tune.  He was reminded that my arthritis IS actually real.  Even doctors believe their eyes more than their ears.  It’s just human nature.

I will continue to stay off my meds.  I am currently waiting for the blood tests that my neurologist ordered to come back.  Incidentally, they were looking for myositis antibodies – fair enough, but I had those done six months ago, and they were fine.  He’s looking for multiple myeloma, which I have also had done a few times before.  But free light chains are also helpful when amyloidosis is suspected, and he’s looking for light chain amyloid antibodies as well.

That’s new.

I don’t think anyone has considered amyloidosis before.  It doesn’t explain my arthritis, but it could be the cause of the neuropathy and the weakness.  And Dr Google tells me that amyloid is often triggered by rheumatoid arthritis.

So he may be onto something here.

And so, I have a new reserve of patience. My doctor is not disbelieving me, or abandoning me.  My doctor is excellent, he is doing everything right, and I need to trust.  Many years of bad doctoring has made trust difficult.  Medical PTSD has made trust difficult. Many years of being dismissed and told I’m exaggerating ha made trust difficult.

But this doctor deserves my trust. It’s a two-way street, a partnership. He cant’ help me if I don’t let him.

And so I wait.

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