I saw my rheumatologist yesterday. I do love my rheumy. She is caring and communicative. She treats me as an equal. She treats me as a fellow expert, just with a different set of qualifications.
This is how all doctor/patient relationships should be when dealing with a chronic condition. Mutual respect for eachother’s knowledge and experience.
She’s the theoretical expert. I’m the practical expert. I live with this stuff every day. She has the studies, and statistics and wide ranging experience with many similar patients. Together we decide what’s best for me.
That’s why I felt guilty coming into this appointment, because in the 8 weeks since I saw her last, I reached breaking point and made several decisions without her consultation. We’ve been going around the same circles for so long, I could predict what would happen at this appointment. And it felt like I had lied to her.
So. Firstly. The daily pain had become so unbearable that I couldn’t wait even another day. I started a prednisone burst the day before my appointment. So I was feeling considerably better by the late afternoon appointment. Prednisone was taking effect. Most markedly on my mood.
Prednisone lifts my spirits. Prednisone evens out my emotions. Prednisone normalises my moods.
I know that is entirely backwards, but that’s how it works for me. As I taper down on prednisone, depression sets in. I get headaches. I feel dizzy. I feel nauseous and incredibly fatigued. I have been wondering lately if this is rheumatoid arthritis symptoms returning, or whether I’m experiencing adrenal insufficiency.
I discussed it with Rheumy and she agreed, it’s possible that because I have been on prednisone for several years now, that my adrenals are not recovering and making enough cortisol as I taper down.
So I will need to taper slower this time. Much slower. I can go from 25mg to 15mg relatively quickly, but from there it will be 1mg per month. Because I know that life becomes unliveable at the 12mg mark. The pain, fatigue and depression kick my butt and dump me on the couch.
Avid readers of my blog will be asking ‘what about your eyes???’
I’m staying in denial on that one. I have another eye test in June. I will find out then how the cataracts are progressing. And if there is any glaucoma. And I will hope. Hope that everything is OK with my vision. I have been dealing with more pain than I can physically and emotionally handle for the last few months. This is not a light decision, but I have to take a prednisone holiday. I have reached my limits on many levels. This is what I told her.
My rheumy asked me if I had been feeling suicidal. I had to pause. My honest answer is that many days I feel like my life is not worth living. I feel this is a direct result of my pain levels, not clinical depression. When my pain levels are lower, my enjoyment of life increases and my depression decreases. Shocking revelation that, right???
But I admitted that there are days, that if it weren’t for my kids, I wouldn’t have a reason to keep fighting. That’s as close as I can get to that subject. I think we’ve all felt it at some point. It’s not easy to talk about.
Anyway, back to the point. I know that some drugs exacerbate depression for me. Rheumy feels that prednisone is the cause of my mental health issues. I feel that Humira is a more likely candidate.
As explained in my other blogs, there is a very consistent pattern, post Humira shot. So the only way to be sure, is to stop Humira. And see if the anxiety goes away.
I agreed. Perfectly logical step. I am on loads of prednisone, so if prednisone is causing the anxiety, the anxiety should continue with a vengeance.
And that’s my second lie. I didn’t tell her that I’ve already stopped Humira. That I should have taken my shot a week ago, and I didn’t. So it’s been three weeks now since I last had Humira. And the anxiety has already abated considerably. It may return. I could be wrong. But the pattern has certainly been broken. However I do understand that sometimes I talk myself into things. Sometimes an idea can be a self-fulfilling prophecy. So we will see. I am to skip the next two Humira shots and then I will call her and let her know how the anxiety has been.
And the third ‘lie’. I had steroid injections in my SI joints. I did an end run around Rheumy, because she was adamantly against me having those injections. She felt there was no evidence that my pain was coming from my SI joint, and the injections were risky.
I’ve had shots in my SI joint before, and confirmed sacroiliitis, so I was pretty sure. I know what it feels like. So I went behind her back, and literally begged my GP to refer me to the best spine guy in town. And the pain relief has been solid. I still get SI joint flares, but they are mild to moderate. It is no longer crippling pain, to the point where I can’t walk.
So she pulled out my MRI and marvelled at the degeneration in my spine. She told me again that RA doesn’t affect the spine and I have a lot of mechanical damage, cartilage damage, going on. But I also have visible, active inflammation on ultrasound. So she agreed, that Ankylosing spondylitis is a fair diagnosis for me. And in that context, TNF blockers are the best choice for me. But I have already failed two TNF blockers, so a different class of biologic should be more appropriate to try next.
I reminded her that I also have synovitis in my small joints, hands and feet, and quite clearly meet the criteria for Rheumatoid Arthritis. I also have synovitis visible on ultrasound in my hips and shoulders. After re-reviewing my bone scans and ultrasounds, she agreed. Yes definitely RA.
So. Seronegative Rheumatoid Arthritis, and one of the seronegative spondyloarthropies. Most likely Ankylosing spondylitis, considering my SI joint involvement and lack of psoriasis. There are also the lupus signs – raynauds, malar rash…another consideration. And sjogren’s.
Different categories of inflammatory arthritis. With different preferred biological treatments. I have one drug option left. She admitted she did not know which one to try next.
I love her for being honest about that. She doesn’t pretend to know everything. She said she needed time to consider. So taking a four week break from Humira would give us both time to think. And for her to review all of my scans and history.
Something that I wish I could say to the rheumies of the world though. I understand the need, in medicine to ‘classify’ everything. To diagnose correctly. To bundle people together into groups, so as to find the best treatments. And in order to diagnose correctly, we need diagnostic critieria.
But let’s remember this: The diagnostic criteria are MADE UP by people. These disease classifications are meaningless in the context of what inflammatory arthritis sufferers are living with every day. They cause comments like ‘rheumatoid arthritis doesn’t affect the spine, so you can’t have rheumatoid arthritis’. Of course I can have rheumatoid arthritis and also meet the criteria for another form of inflammatory arthritis that DOES affect the spine. We’re always told that autoimmune diseases travel in packs, have one, more will likely come along for the ride. Especially if you’re on the more severe end of the spectrum. So why is this always met with doubt?
It frustrates me that rheumies try so hard to fit us into the same box as everyone else, even when it’s clear we are all so very different.
Even so I understand why. Its statistics. Which pattern are we most like, so which drug, based on past experience and clinical studies, is most likely to work best for each individual. It’s the best way they can tackle the problem. So many treatment options. No way to predict which treatment will work for which patient.
And in Australia, five bites of the biological cherry. No more. And if you can’t tolerate methotrexate, only three.
Rheumy repeatedly told me that I’m ‘atypical’. And that I have a lot going on. Yep. That’s true. There’s a lot more of us ‘atypical’ people out there tho. We’re all hanging out on facebook cos we can’t get real lives. Cos we’re in too much pain. And we’re too misunderstood. But I didn’t go there.
She said my arthritis is non-erosive. This is good. Yet I have plenty of cartilage damage. And again, this is subjective. When I had my hips looked at on ultrasound, and my shoulder as well, the radiographer told me he could see erosions. But he didn’t write that in the report. And no erosions are visible on x-ray – only cartilage damage. I asked her about this. She said in someone my age I must have had lots of injuries. I said not at all. My reading says that constant, untreated inflammation will destroy the cartilage first and then the bones.
She said yes, but it doesn’t always progress to bone erosions. So the damage I have now is still termed osteoarthritis. Even though it is caused by the active inflammation of rheumatoid arthritis. Hopefully it will never progress to bone erosions. Hopefully the DMARDs I’m on are enough to prevent the damage continuing. So she wanted me back on Arava, as even if I’m not feeling pain relief, it is probably halting the damage.
Sounds reasonable. Except every time I take Arava, my skin breaks out in pustules and little sores. That bleed. And look gross. I look like I have some sort of contagious, festy disease.
The argument for me of whether I would rather have a visible illness or an invisible illness is easily answered when I have that going on. People stare. People keep their distance. People don’t want me touching anything that they want to touch!
I prefer invisible illness.
Again, she feels that prednisone is to blame for the skin condition, not Arava. So I have restarted Arava, and we will see what happens. I hope that rheumy is right. I really don’t want the skin on my arms to break down and crack and bleed again. It’s gross!
But we compromised. I need to be on a dmard. Methotrexate has caused deep depression in the past, and as I am trying to climb out of the depression pit, throwing mtx on the fire seems like a poor choice.
Of course I’m still on plaquenil, but it’s too mild a drug to do anything for me. And it doesn’t prevent bone erosions. It’s only prescribed for mild RA, or in conjunction with other DMARDs to make them more effective. On its own, it’s tic tacs.
So in summary, we compromised. I have to take Arava, but I get to take a break from Humira. I get a prednisone holiday, which she is not at all happy with, but she understands that I need a break from the pain. She was more upset at the level of oxycontin and oxycodone I have been taking.
And hopefully over the next four weeks, it will become clear, which side effects are attributable to which drugs.
And then we’ll review everything again.