July 2018 and putting my oxygen mask on first


I am finally past whatever it was that knocked me down for the best part of three weeks. My head still feels weird – there’s some dizziness, some nausea, and a headache, but its all mild. The kind you can work through. I can stand up without falling down now, I can drive a car, I can do essentials.

I don’t know what caused it, so it could easily return. If it does, I will get an MRI right away (I told myself it I was still that sick this morning, I would go to the doc and get an MRI. Thankfully, I don’t think I need to now.)

I started Imuran last night. I’ve tried it before. It was many years ago, it was maybe a year into diagnosis. Biologics were much harder to get 10 years ago, and my rheumy made me try every DMARAD available (methotrexate, plaquenil, suflasalazine, arava, imuran), and refused to even try for a biological, because I was sero-negative and he vastly underestimated the extent and severity of my disease.

Two years ago I tried to return to him but he refused to see me, saying my care has been so mismanaged he wants nothing to do with it. Whelp, he was the first rheumy to mismanage me. If I knew then what I know now…

Back to Imuran, I am starting on a tiny dose. According to my records, the side effects were nausea and depression. Nausea was moderate, annoying, but the depression and mood swings were too much. So I stopped it.

I’m willing to try it again, because I am flaring badly and constantly. My RA is out of control and I’m on nothing but 12.5mg of prednisone now, and plaquenil (which is basically tic tacs).

So Imuran. Maybe it will work this time. I may have been wrong about the depression, it was a long time ago. And in the beginning I had very different expectations of my medications. I believed that they were going to give me my life back. Now even minor improvement is worth it to me. I have a totally different risk/benefit profile, so bring it on. Lets see what happens.

My rheumatologist basically abandoned me at the last appointment. She has no idea what to do, and she’s so afraid of all my co-morbidities that she isn’t treating my RA at all.

There are more biologics that I could try, but she won’t prescribe them. She either cites co-morbities that exclude them, or says ‘they won’t work’. Confidence inspiring. On my ‘to-do’ list today is to go back to my 4th opinion rheumy. Get him to treat me. Rituxan is about the only thing left. If he’s not comfortable with my brain MRI (white matter disease) then I’ll accept it. I believe my old rheumy is just too careful. Rituxan can have serious side effects, especially on the brain, but they’re rare. And its my risk to take, my choice to make. Or it should be.

But she refuses to prescribe anything more, not even Arava (which I asked for) because of my peripheral neuropathy. I told her my hands and feet tingle, burn and hurt every minute of every day anyway. Arava is hardly going to make it worse. Still, she refused.

She said Imuran has been used in Eosinophilic Esophagitis successfully, so Imuran was a good choice in possibly treating my RA and EoE with one medication. There’s a certain logic to that, except Imuran is rarely used for EoE, there are few case studies supporting it, that’s it. And I have done Imuran before, and it didn’t work.

Still, she was clear, its this or its nothing. She will not prescribe anything else. So I am trying it, while I wait to see my other rheumatologist. He’s not exactly keen to take me on either, but someone has to.

But back to the upside, I am finally feeling better. Back to my usual baseline. Which isn’t exactly great, but there’s nothing like a reminder of how much worse things can get to put life into perspective again.

I have so much I want to do today! I have some energy, and I can walk. I can think more clearly and the truly awful nausea has mostly passed. I am in megaflare, my eyes are particularly inflamed, and most of my joints are swollen, so I won’t do much of my physical ‘to-do’ list. But there are so many things I want to write, things I want to read…I finally have a few hours to myself, and today I am just going to use them. It’s nearly 9am, and I have until 2pm before the kids come home. I need this time to myself for my sanity. If I do nothing but sit here and watch TV, it will be a day well spent, because I need to look after my mental health. I’m the only thing holding the kids together right now, so today I’m putting my own oxygen mask on first.


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