I hope you’re enjoying a lovely winter break, whether you celebrate Christmas, Hanukkah, another holiday – or none at all! I’m lucky to have almost two weeks off this year. Some of it will be spent cooking & baking, as best I can without using my right hand and arm.
I’ll also be – hopefully! – doing some of my beloved outdoor sports. Finally, I’ll be catching up on some reading. This is an example; this post is about a medical journal article that was published a few weeks ago. I hadn’t had time to read it on the spot, so saved it.
This article had such a hopeful title that I wanted to take the time to savour it: “Emerging therapies for neuropathic pain: New molecules or new indications for old treatments?”(1) Unfortunately, as with much of the research into chronic pain conditions, the article didn’t include any mention of my disease; Complex Regional Pain Syndrome (CRPS).
Even though the article doesn’t specifically mention my disease, it’s still interesting because CRPS is – at least in part – a neuropathic pain condition and:
Neuropathic pain is still considered as a highly unmet medical need despite an increasing number of available therapies. Most of the treatments usually available have a modest efficacy or safety”.(1)
Let’s break down the end of that statement, because it’s important; the treatments currently available for neuropathic pain have “modest efficacy or safety”(1). In medicine, ‘modest efficacy’ is a way of saying that something doesn’t work very well. ‘Efficacy’ means that a treatment is ‘effective’ for a specific symptom or medical issue.
The phrase ‘modest safety’ is a bit more complicated. That means that it can cause some harm. To be prescribed in Canada (and most countries), the government has to first evaluate the treatment. The government decides whether a medication or medical device is safe enough to be prescribed in that country. Then a physician decides whether – and when – to prescribe it for their patient.
For serious medical conditions, the government might approve a medication that can cause health issues. An example is the blood pressure pills that my mom used to take, 30 years ago; if she stood up too quickly, while on that medication, she’d feel faint. If she fell, because the pills made her feel faint, she could hurt herself.
That was a safety issue with that old type of medication. But – and this is crucial – the risk of her having a stroke from high blood pressure was a much bigger safety issue than falling. Put another way, the risk of harm to my mom, from taking these pills, was much less serious than what could happen if she didn’t take them.
That type of trade-off, in medicine and clinical (medical) research, is often called a risk/benefit ratio. Sometimes a risk-benefit profile; or assessment, or analysis.
Another example of risk-benefit ratios is hip replacement surgery. The replacement hip is a medical device, so the government has to have approved it for use in given country. But we all know that surgery includes risks; infection, bad reactions to anaesthetic, surgical mistakes, blot clots.
Yet many people, in collaboration with their doctors, decide to have this surgery. The patient considers the risks of the surgery, and the potential benefits to them, and makes a decision. Knowing that the government has already decided the replacement hip is ‘safe enough’ to be used here.
Now that we’ve talked a bit about efficacy and safety, what do you think would be the best case scenario for a treatment for neuropathic pain (or anything, really)? In an ideal situation, the treatment would have an excellent efficacy and safety profile. Next best would be if it had excellent for safety and good efficacy – or vice versa.
Even if both sides of this coin were only ‘good ‘rather than ‘excellent’, that would still be acceptable for many physicians. And for many patients, too; think of our hip replacement example.
At this point, I’ll ask you to think back to the start of this post… This medical journal article says that the treatments for neuropathic pain show “modest efficacy or safety”(1). That means that neither is particularly good. I’m not a physician, although I have worked in medical research for years.
To me, the risk-benefit ratio of current neuropathic pain treatments looks something like this:
a) Modest efficacy = Lower chance of benefit to me (than ‘good’);
b) Modest safety = Higher risk of harm to me (than ‘good’);
c) So, overall = Lower benefit/higher risk.
For some diseases or medical conditions, that profile might be ‘good enough’. For someone who has an aggressive type of cancer, this might be a really good option. Someone who has suffered a stroke may decide to accept that type of risk/benefit ratio, if there’s a chance they can regain the ability to speak.
Each patient, each person, is different; we each have our individual beliefs and values. What’s important to me may not be so important to someone else. This is why treatment options should take these individual patient views into account. In my case, CRPS isn’t imminently life-threatening.
Yes, I deal with horrific pain every day (ranked as more painful than kidney stones or childbirth!), but after more than a year now I’ve kind of gotten used to throwing up – or fainting – from pain whenever someone bumps or touches my right hand or lower arm. Yup, even at work!
My trick for dealing with that is to mostly fast at work, not to eat anything. I have 200 ml (a bit less than a cup) of chocolate soy milk for breakfast at my desk, and then eat when I get home at 1800 or later. I’m in so much pain that I’m not usually hungry, so I don’t mind too much – most of the time.
The motto, for many of us living with chronic neuropathic pain conditions, could be: “Do whatever you have to do, to get through the day!” And I realize that I’m lucky… my disease only affects my right hand and arm – not my legs. So I can walk, drive, get around by myself. I even ride a bike, but using only my left hand; and I have to stop often, to ‘rest’ my CRPS.
There are lots of things that I have to do so much differently now, from my pre-CRPS days, just to ride my bike. But I’ve always loved cycling, so this is important to me. And exercise releases endorphins into the body, which help reduce sensations of pain. Sometimes I actually feel less pain on my bike than I do at home, doing nothing.
Chronic pain conditions affect women much more often than men, so I don’t know how mothers deal with childcare – while living with neuropathic pain. They definitely have my RESPECT! I have a bad enough time, and I don’t have young children at home. My husband is really understanding, and lets me try to do things myself; I know that when I do need help, all I have to do is ask him.
Despite that, I’m still hoping that my team of specialists will be able to find a treatment that helps with at least some – of the many – symptoms of CRPS. So I’d had high hopes for this medical journal article… but ‘modest’ results aren’t good enough for me to take the risk of these treatments. Not at this point in my life, at any rate.
As always, thanks for reading!!! For my Twitter friends, feel free to DM me if you have questions or comments.
Happy New Year!
Reference:
(1) Didier Bouhassira, Nadine Attal. Emerging therapies for neuropathic pain: New molecules or new indications for old treatments? PAIN NeuPSIG Reviews. International Association for the Study of Pain (IASP). 18 Dec 2017. Online: http://dx.doi.org/10.1097/j.pain.0000000000001136. Accessed 31 Dec 2017. Web:
https://www.ncbi.nlm.nih.gov/pubmed/29447137