By Greg
What This Post is About and Who is it For?
Recently I was reading a Marfan Syndrome Facebook Group post. The person was asking about people’s different experiences with pain killers. A really important issue for Marfans.
I gave a reply which, among other things mentioned medicinal cannabis (MC). I then got some other questions about our Australian experience.
This post is based on my reply to them.
If you aren’t in the market for MC there is still some interesting stuff here, but I wouldn’t blame you if you just skipped this post.
I previously mentioned cannabis oil here.
What We Learnt
This information is based on Trenna’s extensive notes, but I haven’t gone and Googled stuff to confirm it. You might want to do additional research.
And of course, this ISN’T medical advice.
Government
Australia’s Federal system of government means that before MC can be prescribed it has to be approved – for each individual – by both the state AND the Federal government bodies. In Western Australia, where I am that is the WA Health Department and the Therapeutic Goods Authority respectively.
My understanding is that all Australian GPs are permitted to prescribe MC. In our case, our very professional and much trusted GP didn’t want to do it, purely because she felt she had inadequate training in it – which is fair enough. She offered to do some additional training, but as it turned out, that wasn’t necessary.
Trenna got onto MC through her pain management specialist (if you have chronic pain and haven’t got one you really ought to see a pain specialist. They know a lot, and there are some drugs that only specialists can prescribe).
We were having an appointment with him and he was running out of options. Then he said “I had a meeting with a doctor the other day. He was a GP, but he has set up a practice specifically for people who need cannabis. It might be worth talking to them. It is so new in Australia, it’s hard to get the necessary approvals, but this guy recons he knows the right things to say“.
He wasn’t suggesting anything untoward, just that they knew the system well.
Trenna, me, and the pain management specialist all knew that he, the specialist, was just clutching at straws!
The place we went was called Emerald Clinics. I believe they started in Perth but have practices in Melbourne and Sydney as well. I’m not necessarily recommending or not recommending them.
On the plus side they seem very evidence based and involved in research, which is great. As you would expect they know a LOT about MC.
On the negative side they seem very focused on making sure you pay your bills and the consult fee was generally higher than pretty much ALL our other specialists. Trenna and I were on a pension by then but that didn’t seem to reduce their rate.
Another thing, the actual cannabis oil was quite expensive and not on the PBS (the Australian Pharmaceutical Benefits Scheme which heavily subsidises many medicines). Our private health insurance didn’t cover it either – it does cover some other non-PBS drugs.
We got an appointment fairly promptly – it was 7 January 2019. From memory Trenna was client No. 25. The approvals all went through seamlessly and probably took a bit under a month.
What the Doctor Told Us
The two active ingredients they play around with are THC and Cannabidiol. And there are different blends of the ingredients according to what your needs are. Trenna had 50% of each, some people have 100% of one or the other, or some other combination.
The THC reduces the perception of pain, the Cannabidiol acts as an anti-inflammatory.
THC can have some side effects (I’m not sure what) but Cannabidiol has pretty well none.
Here is an interesting quote from Trenna’s notes:
“He [the doctor] said that a single joint, depending on your dealer, had about 150-300mg of THC. The oil he would prescribe would have about 10mg/ml of THC which is the agent that reduces the perception of pain. It would also have 10mg of an anti-inflammatory, also from cannabis.”
Once all the approvals went through we were given a prescription which we could take to a regular pharmacy, but they would have to see the approvals and order it in.
Or, we could go to a particular pharmacy we were pointed to (Oxford Compounding) where they always had it in stock. In Trenna’s case it was an oil that you would measure with a syringe and squirt into her mouth.
I’m pretty sure she said it tasted like cow poo, but it is a tiny amount and the taste wasn’t an issue.
A very important consideration is that if you are on MC you may not be permitted to drive
The particular oil we got was made in Western Australia and we were very confident it was made to strict standards and consistent in potency (our only guide to this is trust in the system).
On that initial visit the doctor said “about 30% of patients find it very effective, another 30% have some benefit, and about 30% think it does nothing for them.“
Pills As Well AS Oil
On another visit to the same clinic, but a different doctor we were saying that it wasn’t having much effect, other than helping sleep. He said there were some cannabis pills we could try – I don’t recall that we ever did try them. They were Cannabidiol only and came in a pack of 30.
Trenna thought that if the oil had had any pain relief benefits it was minimal, and as it seemed to make her very drowsy it wasn’t worth it.
But, with the approval of the doctor we started using it about 45 minutes before bedtime and it worked really well at helping Trenna sleep. For us, that was the real benefit. She took 0.5 ml of the oil each night with her other bedtime drugs.
Another thing we were told is that there is “some evidence” that MC can improve the effectiveness of other pain killing medication. I don’t know anything more about that.
A very important consideration is that if you are on MC you may not be permitted to drive. If that is an issue for you it is an important one. Trenna was legally blind so no real problem for us.
It also was a real issue when we took it with us when Trenna was admitted to hospital a few times. There was a lot of confusion amongst nursing staff about how and where it should be stored, and how and when to administer it. Hopefully that will improve over time.
Present Day
In preparing this post I spoke to a friend who has other health issues, because I knew she was interested in trying MC and I wanted to see if the situation had changed. She recons both her GP and her rheumatologist are putting road blocks in front of her.
She and I think it is a lack of knowledge, but neither she nor I are doctors so, they may be doing the right thing.
I’m left with the impression that cannabis oil is a worthwhile drug to have freely available, but Australia has a long way to go in training medical staff and perfecting how best to use it.