Recently I wrote about the struggle I’ve been having getting adequate healthcare. That post resonated with a lot of people. It’s a very common story. I thought I’d give a quick update on my progress.
Yesterday, I had an appointment with my Rheumatologist. Recap: I had a rheumatology appointment in November, at which time it was stated that the medication I was on for my Ankylosing Spondylitis (a TNF inhibitor called Enbrel), was not working. The next step once self-injectables like Enbrel don’t get results is infusions of a much stronger drug, which you have to go to the hospital for. As you can imagine, I was eager to start the infusions as soon as possible. Living with AS is no joke. I will basically try anything at this point.
Nothing came of that appointment. I probably should have followed up sooner. As I’ve said in this post about how to self-advocate, if you don’t pursue things yourself pretty much relentlessly, you’ll get nowhere.
- The promised February appointment was never made. I only get one because I call several times to ask where I am on the list. When I finally get seen on 27 Feb, the nurse says again that it’s time for infusions. She says she’ll call me on Monday to tell me exactly which medication that will be.
- I wait til Wednesday and hear nothing, so I start calling. No one ever answers at the clinic so I leave message after message. On Tuesday 14 March, I get a voice mail from the receptionist at the clinic. They say the nurse met with the doctor yesterday (two weeks after I was told that would happen), and the doctor has prescribed something for me.
- I have no idea what the voice mail means, but it seems clear to me that no one at the other end really knows either, and had I not continuously called, I may never have heard anything.
- Wednesday 15 March. The receptionist says she knows nothing about me starting infusions, despite me now waiting four months for this to happen. The script I’ve been given is for a medication that’s been tentatively tested in a very small group of people to treat fibromyalgic pain. I look it up. It’s completely wrong for me.
- I cry when I hang up the phone. All this energy from me, for nothing. Why am I not being given the infusions? Why has no doctor ever called me? The script is not only likely to make some of my symptoms worse, it does nothing to address the debilitating side effects of Enbrel. It may well have pain benefits: but am I willing to take that chance when no doctor has taken the time to explain it to me?
At this point, I asked a friend to step in as an advocate for me. She is uniquely placed to do so – not only does she have AS herself, she sees the same doctor and nurse, and she has a background in advocacy. She has the nurse’s direct number. She makes the call.
Because of her, I got the appointment for yesterday. In fact – it was her appointment, and she handed it over to me. The Rheumatology clinic is so underfunded and understaffed, I may well have been waiting several more months. Her compassion is immense.
So, now we get to yesterday. I am understandably terrified, walking into this appointment. The doctor knows I’ve complained, and I have no idea how he’s going to act, or what he might say about my treatment. I’ve readied myself to be denied the infusions – not because of complaining, but because he’s decided on a different option. I’ve readied myself to be told I’ll be on a months-long waiting list.
None of that happens. The doctor looks me in the eye and apologises. I’m floored. I’m definitely not used to medical staff owning mistakes. He even writes it into a letter to the hospital and my GP. “I want to apologise for the time Sarah has had to wait. It’s unacceptable.”
That letter is my key to getting infusions. Yes – you read right! I’m getting the infusions!! I’m elated. The medication is called Infliximab, or Remicade. It’s pretty hardcore, but unfortunately, that’s what I need. I have to wait for the call from the hospital, but my advocate and the doctor assured me that it should be a pretty quick turnaround from their receipt of the referral, to the appointment for the first infusion. Like, it could even be as close as next week. I am terrified and so, so hopeful. This could be life-changing for me.
I’ve also been prescribed a drug called Naltrexone. It’s kind of experimental. In high doses (50-100mg), it’s traditionally used to treat opioid addiction. However, at 1/10th of that dose, it acts on inflammatory pain.
Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Source.
Like I said: I’m willing to give anything a shot.
There was two other incredible things about my appointment. One, my doctor requested – in fact, begged, – me to make a formal complaint about the time it’s taken for all this to happen, and my experiences as a rheumatology patient over the past few months. He says they are grossly underfunded, and their own discussions with the DHB are fruitless. They need patient data. So I am working on that today. And two, he spoke to me about the process for applying for medicinal marijuana. He did this for another patient. He said it took hours and hours of work, but they finally got approval – only for the patient to be told by the pharmacy that the script would cost $1200 a month to fill. My doctor wrote in fury to the Ministers for Health and Police, saying that they are literally forcing sick and disabled people into being criminals, because access to a scientifically-proven medication is so restricted as to be impossible to access.
I had tears in my eyes at this, to be honest. Of frustration, of sympathy for the other patient, of despair because my doctor is so right. All the evidence for medicinal marijuana is there. And yet, it’s still a political issue and people who could hugely benefit are suffering.
Anyway. For me, for now, there’s some good news, and some lights on the horizon. I’m nervous for the infusion – it’s likely to have some shitty side effects, like all drugs do – but as I said, it could also be life-changing.
Right. I’m exhausted. I stopped the Enbrel treatment over two weeks ago, so my symptoms have been creeping up, including the pain and fatigue. Basic tasks have started to be a struggle.
But – I have a letter to write.