Home My story Living with Rheumatoid arthritis (and other painful diseases) and my pain management doctors opioid forced taper

Living with Rheumatoid arthritis (and other painful diseases) and my pain management doctors opioid forced taper

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Yesterday I had my annual “health check”.  My GP has been pushing me to make this visit for months.  It was a complete waste of my time, its an appointment with the practice nurse (who was lovely) running through basic health questionaires and measuring weight, blood pressure, and checking basic health markers, such as cholesterol. 

I am a highly monitored patient, I’m well educated about my general health, I didn’t learn anything new.  This is pure revenue raising, the practice bills medicare, everyone’s happy.  Except it was a complete waste of my time and energy.

After the visit with the nurse, I discussed the ‘findings’ with my GP.  As there wasn’t much to discuss that we haven’t discussed before, I brought up my opioid pain medication and the forced taper she has laid out for me.

I told her that I have huge concerns, that I have done this taper before, and it doesn’t end well.  I questioned why I have to go through this again when nothing has changed.

She cut me off with her position, which is that she is only following my pain management doctor’s taper plan, and that she is bound to that plan. 

I told her that my pain management doctor spent LESS than two minutes with me at my ‘pain management review’ appointment. He barely listened, I tried to explain how I use my breakthrough pain medications to best effect.  That his taper is theoretical but doesn’t suit how I use my medications.  That I paid over $200 out of pocket for an appointment tht lasted less than two minutes where I wasn’t heard at all.

She replied that still, she was bound by his instructions, that she was tapering me as slowly as she could.

I told her I didn’t want to be tapered. That I am doing well on my current dose, I’m doing my physio, going to gym, doing basic house work, walking daily, walking unassisted, basically living life.  And if she tapers my opioids I will be sent back to the couch and a life of endless pain and disability on the couch.

She said I needed to look at other alternatives.

I reminded her I’d looked at all the alternatives.  There are no other alternatives that I haven’t already tried.

She said that because I have now had a spinal fusion I could try more radiofrequency ablations. 

I told her I’ve already had FIVE radiofrequency ablations, none were much good and it’s a very expensive procedure.  It means a day in hospital, which is still hard for me, it means an anaesthetic which is still hard for me, and it isn’t an effective treatment.  Certainly not as effective as my opioid pain medications.  So why was I being force tapered off of the treatment that works?

She told me “there is NO evidence that opioids work long term.”

I said “they work for ME.  I’ve been taking them for many years, and I am doing great on them.  That’s evidence enough.”

She said ultimately they would cause me problems.  She also reminded me that I refused other medications – tricyclic antidepressants, gabapentinoids, anti-epileptics. 

I told her I hadn’t refused them, I have tried them all in the past and they weren’t effective or the side effects were unbearable. Or both. 

And then I said “You know that there’s NO scientific evidence that these other drugs work long term either, right?”

I said it politely, but she was not happy with that. Its an uncomfortable truth. There IS no evidence that those alternative medications are safe and effective long term for chronic pain.  Many of them are also addictive and cause terrible withdrawal symptoms.  Many of them are also being abused by people trying to get a ‘high’.  If you argue that opioids are not safe and effective, you have to apply the same rules to other medications as well.  And when you really look at the evidence, opioids are the far better option.  But no one wants to look at the facts.  Only the hysteria.

She then suggested I try a ketamine infusion. I told her I’ve never been so terrified in my entire life as when I was on ketamine.  It was the worst experience and it did NOT reduce my pain, nor did it ‘reset’ my pain tolerance or opioid tolerance.  I will NOT do ketamine again, for me it was a horrific experience.

She repeated that she was bound by my pain management specialist’s taper plan.  She said she could refer me to a new pain management doctor, but she was sure it wouldn’t make any difference. That all pain management doctors are tapering all their patients off long term opioids.

I said “Why?”

She cited the “opioid epidemic” in the US.  I quickly said that the US is realising that they got it way wrong on the opioids for chronic pain and the tide was turning in the states.  That chronic pain patients were never the problem.  That 75% of those in the US who were addicted to prescription pain killers did NOT have a legal prescription, so despite the substance being medical opioids, these were still illicit drugs.  NOT from pain management. 

I told her Australia does not have an opioid epidemic 

She said they were trying to prevent one.  And that some people DO have a problem with opioids.

I asked her if it would help if I brought in the studies that showed that less than 1% of chronic pain patients become addicted to opioids.

She snapped that it probably wasn’t’ a high-quality study, nor peer reviewed.  I said I would check the credentials and bring it in for her to read.

I told her painaustralia were battling the force taper of opioid medications and they advised chronic pain patients to print out their resource sheet and show them to their doctors.  And that painaustralia had told me that it was NEVER the intent of the new regulations to force taper everyone off opioids.

She said it was exactly the point of the new regulations. That the pressure from the government was very much about tapering all chronic pain patients off opioids.  That all chronic pain patients WOULD be tapered.

I said some doctors are still prescribing.

She said that they won’t be for much longer.  That the policy was written and all pain management doctors were aware and needed to taper their patients.  She was resolute.

I don’t know if she’s using this as an excuse because she personally does not want to keep prescribing opioids for me, or if she’s correct and all pain patients will be tapered in time.  It might be a big chunk of both.

I hope she is making excuses for herself, because the idea that ALL chronic pain patients will be force tapered is just abhorrent.

I have seen it written on a blog written for GPs that one strategy for explaining a treatment plan that the patient isn’t on board with is to say that it’s the responsibility of the treating specialist and the GP’s hands are tied.  Basically, pass the buck.  That’s what she’d doing so as to terminate the discussion.

I told her I knew of many other patients who also see my pain management specialist and they were being force tapered as well.

She said “See?  This is what’s happening and there is nothing you or I can do about it.”

I again tried to engage her empathy. “But I’ve worked my ass off in the gym, walking daily, doing my physio.  Tapering me down lower than this will take all of that away.  I’ll be stuck on the couch again, and all of that pain and hard work was for nothing.  I have done EVERYTHING right. I have never abused my medications and I do not have an addiction problem.”

She said nothing…then she said “some of my patients do have an addiction problem.”

I should have asked her there and then if she thought I was an addict, but I didn’t dare.  I honestly would not have been able to handle it if she’d said “Yes.”  It woud have ended our doctor-patient relationship then and there.  I wish I had now. 

Instead, I asked her what I can do.  What recourse do I have?

She said nothing.

I said I will try get an appointment with my pain management specialist and plead my case again, because I can’t sit by and let him take my life away.

She said “good luck”. It wasn’t sarcastic, but it wasn’t hopeful either. 

I told her I would be another $200 out of pocket and he’ll likely ignore me but I have to try.

And that was that. I left. 

She was a brick wall.  She had no sympathy.  She believes opioids are not appropriate for chronic pain.  She is wrong and she will harm her patients.  I am going to bring her those studies, so that she can educate herself.  I think her days as my GP are now numbered.

But it’s not easy to find a new GP. I tried that two years ago.  It didn’t end well and it cost me a lot of money.

First, I will make an appointment with my pain management doctor.  I hope I can get in within a reasonable time frame. If I can’t see him for three months the point is pretty moot.  I have one more month of medication at a dose that keeps me functional. After that, I will start to spiral down, slowly or quickly, depending on how hard I push my body.

ALL my hard work will be for nothing if that happens.  I can’t let it happen.  I feel so powerless and unimportant.  My needs and preferences are not even considered.  This witchhunt against opioids has gone too far.  The pendulum has swung WAY too far and its not about patient care or safety. 

Postblog:  I have made an appointment with my pain management specialist for the 28th of August, at 11:30am.  One week and one day. I’m lucky there was a cancellation.  Now the challenge is to put the stress of this forced taper OUT of my mind, because thinking about it is only increasing my anxiety, and increasing my pain.  I will keep working on a patient led pain advocacy organisation and postpone my own personal fight for a week. 

1 COMMENT

  1. I suppose that I am surprised at some of the things that happened. I do not know a single person who has used ketamine infusion in the US. I image there are several, but I do not know them. So I was surprised by that. Second, in the US we use pain management and yes they do control the use of opioids but we also use rheumatologists who also can and often do prescribe opioids in place of the a pain management doctor. I have heard GP’s do this in other countries, but the idea of a seeing a GP for something like RA is not usual in our the US.

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