How to trial medical cannabis

January 20, 2017 12:32 AM

I’m considering trying marijana to help with pain management from a chronic illness, specifically Ankylosing Spondylitis.

I’ve been on three different biologics (all TNF alpha inhibitors) for the last five years and am about to trial a new biologic targeting IL-17. I take 10mg continuous release oxycodone twice daily and supplement it with panadiene forte (500mg paracetamol / 30mg codeine) as needed. Some days I don’t need anything extra, other days I might need 3-4 tablets. Some days, more.

This is all under the supervision of my GP and Rheumatologist. The original pain management strategy was worked through with Pain Management specialist. We went through all the modifiers: gabapentin, pregabalin, tricyclic antidepressants and a couple of others I’m forgetting. I also occasionally use temazepam if muscle spams get out of control. I’ve been on prednisolone pretty much continuously for the last six years at various levels with one short break a few years back that left me debilitated for several months and this week. I’ve tapered off, again under supervision, so that there’s a baseline to evaluate how well the new biologic is working. I’ll be starting it in probably about a month or so. Lastly, I’ve recently been drinking more than I should, mainly to get to sleep. The pain at night can be unbearable.

I really don’t want to increase the opiates and I need a break from the steroids as the long-term side effects are mounting up.

Hopefully, I’ve not left anything obvious out. I see my GP monthly to update the opiate scripts. We talk about everything. Same with my primary specialist, except I see her every ~three months. If anything does arise, she’s very responsive to returning phone calls.

So back to the pot. A close friend suggested I try pot to assist with pain management. He doesn’t use it himself, but researched it as his partner was dying of bowel cancer. He’s also got three boys in young adulthood. He encouraged me to consider it. I spoke to another friend who does smoke pot. She offered her support and spoke to her friends that grow (unsubstantiated, but according to her, one of the growers being licensed for the medical marijana trials in my state.) They’ve offered a cookie for me to try that’s currently in my friend’s freezer. If I decide to do this. I guess I’ll have a source until the trials move forward.

I spoke to my GP about it earlier this week, couched in terms of whether it would be a good option for me when it’s extended beyond use in terminal cancer. He got the joke. He smiled and said he thought I would be an excellent candidate. He understood. I see my Rheumatologist in about a month, and I’ll talk with her as well.

Tonight, I broached it with family that are currently living with me. Huge support for the idea. They don’t use pot.

So, profile. I’m more than willing to try various meds to manage my disease. I talk it through all the time. I want to have an intention and an objective for any drug I add to the mix. I have never used illicit drugs. I have blood tests every month to six week to monitor detrimental impacts of my current regime. Taking opiates has never given me a “high”. Generally, It takes away the noise of my back, neck and rib cage. It doesn’t remove the, sometimes amazing, acute pain. I don’t think I want it to. As an aside, I had surgery a little over a year ago to remove a skin cancer just under my eye. I was given Endone to deal with the acute pain. I’ve still got half the script left. A high is not what I’m after.

I’m looking for an opiate-sparing option with a longish effect that doesn’t lead to a high. I don’t want a high. Just a release from the constant undercurrent of pain that is AS’s gift. And a week of good sleep. Have I been repetitive enough? Is cannabis a candidate?

I’ve never used pot before, much less any other drug outside of medically prescribed stuff. I’ve been told I should trial both ingested as well as inhaled. I’ve never been a smoker so I’m slightly leery of that. I know pot is incredibly common, and for heavens sake it shouldn’t be illegal. So, forgive me for being a little bit of a prude about this. I don’t like taking things that include uncontrolled supply chains.

Here’s the compound question:

- Does this all sound reasonable?
- My experience is that I start getting relief from the oxy 20-30 minutes after taking it. What’s your experience with cannabis. Differences between smoking or ingesting?
- Does it really help with pain associated with inflammatory processes and is the effect long lasting?
- Does it help with sleep?
- How do I manage or understand dosing? My pain is pretty much constant. The regime should fit a daily routine.
- Should I try it and how best to keep my doctors updated?
- And lastly, how best to contrast and compare its effectiveness?

All views welcome, including other options. Anonymous not because I’m ashamed of where I am, but because there’s a lot of referred detail here for others in meatspace that I’d rather remain detached.

posted by anonymous to Health & Fitness (16 answers total)

I'm just wondering, since you and your doctors seem to be incredibly thorough, if you or they have considered the prescription drug Marinol (Drodabinal). It's a synthetic cannabinoid available by prescription. I took it for about a year when my arthritis, migraines, and insomnia were all flared up in a perfect little storm together and my regular medications weren't enough to handle it.
Like most medications, it doesn't work exactly same for everybody, but it did for me. I didn't use it to replace any medications, but the Marinol seemed to give them an extra edge. My insurance paid for it, and it's legal everywhere in the US. It comes in a little capsule that you keep refrigerated.
posted by The Underpants Monster at 2:04 AM on January 20, 2017 [2 favorites]

You seem to have a pile of caution around this, so I think you're going to be fine - you're not exactly a teenager trying to be cool. Try it, start with small doses, record the results, and if it doesn't work stop trying it. I think keeping a pain diary might help you assess the effectiveness of anything you're taking.

Smoking is more or less immediate, while edibles are slow. Don't think "nothing happened, I'll try some more" - choose a dose and stick to it, and change the dose on the next experiment.

Everyone's different. Damn stuff makes me throw up. From observation, severe pain "soaks up" the high - like they cancel each other out - leaving the user maybe a little fuzzy, but not stoned and able to function.
posted by Leon at 3:25 AM on January 20, 2017 [4 favorites]

A high is not what I’m after

What you want to look for is something high in CBD for the pain but low in THC, which has the psychoactive properties. The CBD will also help cancel out the THC. There are strains like this (Harelquin (Sativa) and my favorite, Pennywise (Indica) but I think you should probably try some edibles before smoking. With low THC edibles you don't have to worry about the inconsistent and variable high you can encounter with edibles. I like these Good-Ez candy lonzenges but you'll have lots of choices. You can also get it as a tincture, in drinks, or caps, in various strengths.

- Does it really help with pain associated with inflammatory processes and is the effect long lasting

Both things I mentioned above are working really, really well for my hip bursitis. The candy (1 lozenge) takes about 20 mins and last a few hours. I actually overdid it today because it felt so much better. I have a topical that helps with the trigger finger I get in my thiumb. I definitely had to try a few different things to find what worked best for me but this is to be expected.

If you do smoke I would look into getting an inexpensive vaporizer to start.

Go to your local dispensary and talk to the budtender, they should be very knowledgeable. And still firsr try it when you can be home for a few hours in case you do get a little buzz or it doesn't agree with you. Good luck, pain management is hard.
posted by Room 641-A at 4:13 AM on January 20, 2017 [7 favorites]

Secondhand, but I knew someone who used cannabis for neuropathy pain. He described it as "My foot still hurts, but I just don't care about it as much." That may be a little hard to translate, but I think it means something similar to your phrase "takes away the noise."

I have also known people who used it specifically as an occasional sleep aid. They said the effects felt like melatonin.
posted by snowmentality at 4:17 AM on January 20, 2017 [1 favorite]

Can you give the mods a disposable email to post here? You'll likely get a lot more responses privately. Medical cannabis use is still not legal everywhere.
posted by PorcineWithMe at 4:18 AM on January 20, 2017

Pot is legal here, so I have a shocking amount of answers despite not using it myself! My sister in law uses it for chronic inflammatory pain, and it works quite well for her.

In places where it's legal, there's a lot of differentiation between types of pot that work well for pain reduction but not as much of the "high feeling", and more recreational pot.

What I would do is call up one of the dispensaries in a place like Seattle, and say, "hey, I'm looking for X result, which type is best for me" and then see if you can get it. If finances allow, you can fly or drive in and pick them up. My SIL uses gummy bears that have been made with pot, because they are portable for pain management on the spot.
posted by corb at 5:36 AM on January 20, 2017

Oh yeah, the people I know who have used it for sleep aid say that there exists a pot extract, that you can eat about 20 minutes before you want to go to bed, and it works pretty well.
posted by corb at 5:38 AM on January 20, 2017

Leafly is a popular resource:

Cannabis 101

Cannabinoids (CBD) 101:. What makes cannabis medicine be?
posted by Room 641-A at 7:00 AM on January 20, 2017

Yes to all the above. Different ratios of THC and CBD work for different things for different people, and you may have to experiment a little to find your optimal ratio and dose. Edibles can take longer to take effect, but also last longer, and seem to work better for some.

Lowering the constant level of background pain so that you can actually function is an excellent way to describe the effect.

I've been on glucocorticoids (though likely not at the dose you're on), various pain meds, anti-anxiety meds, etc. Cannabis has been by far the most effective for pain management. If you find that you can't get into a trial and you only have access to black market cannabis, which will have high concentrations of THC and low concentrations of CBD, you can supplement the CBD levels with CBD oils that you can buy online from (now) reputable companies.

You sound like you've got a handle on this, and truthfully I'm almost weirdly excited for you, because I'm hoping that medical cannabis improves your quality of life the way it has mine. Good luck, and feel free to MeMail me.
posted by schadenfrau at 7:24 AM on January 20, 2017 [2 favorites]

Marinol only has a few of the medicinally helpful parts of the plant. Smoke or eat real weed. Trust me. It 100% will help, and if you use a high CBD strain you can pretty much avoid the high, although I've noticed when people really need it it doesn't really give a high. I think you'll be fine. Just be nice to yourself - you deserve the benefit of the marijuana medication. It'll do you well with the pain and the sleeping.

Be careful - smoking it and eating it are way different. Eating takes much longer to kick in and is harder to control but is a body high which is great for body pain. It's a choice you have to make for yourself.
posted by jitterbug perfume at 7:26 AM on January 20, 2017 [1 favorite]

I've used marijuana to cope with Crohn's disease for years. In my state, where it's legal, it's a very straightforward process to get and try different options. In my case, I opt for oral tinctures with a high CBD / low THC content. This limits the "high," but doesn't eliminate it. For years prior, I used a vaporizer, and before that I smoked it the old fashioned way. A tincture acts faster than eating, say, a baked good made with marijuana butter, but not as fast as inhaling the active substance. Eating and taking tinctures can lead to intense experiences if you take too much, but we're talking about feeling woozy and uncomfortable and not having a toxic, dangerous reaction. This is why the usual advice is to start with a very, very small dose and judging how it makes you feel over the next couple of hours. You only escalate to higher doses if you feel comfortable doing so. For me, using the formula I use, yes, it helps me sleep and it either relieves or takes my mind off of chronic discomfort.

I never sought out Marinol because access to a huge variety of strains has always been simpler, even if illicit, than going through the trouble of acquiring a prescription for a limited derivative of the plant (which, I should add, is a derivative it sounds like you want to avoid because of its psychoactive nature).

Crohn's is mediated by inflammatory processes that aren't well understood, so I, too, have been through several rounds of two biologics. I didn't like the experience and I felt like I was trading one group of unpleasant symptoms for another. Marijuana is no less confusing--in that the mechanism of action in terms of relief from inflammatory pain isn't super clear--but the proof is in the pudding: it will either help you or it won't, but you more likely than not won't suffer from unpleasant side effects. For that reason, it's much simpler to let go of having too many specific questions and just try it. And I say this as a toxicologist.

If you wish, I'm happy to chat. Just shoot me a message.
posted by late afternoon dreaming hotel at 8:48 AM on January 20, 2017 [2 favorites]

(Thirding the thing about pain often canceling out the high. Happens with other drugs too, I've noticed, but definitely with pot. I can eat kind of a lot of even high thc stuff and still be fine, and then when I've gone through good periods of having less pain, I've all of a sudden gotten accidentally stoned (and then have to adjust dosage again). Although I don't think I've ever found a pain management system or technique that was truly "set it and forget it," so I suppose this is somewhat par for the course.)
posted by schadenfrau at 8:49 AM on January 20, 2017

Nthing that with edibles, start in small doses.

The effects can take 1-2 hours to come on and plateau. And if you happen to ingest too much at once, just remember that you are in no danger; it's just not the funest. This risk can be mediated by starting with small doses.

Edibles are weird, but helpful! I hope it helps :)
posted by Drosera at 1:12 PM on January 20, 2017

It sounds like you've really thought through this and would be a good candidate. Definitely give it a try. Unlike opiates or steroids, there's little long-term downside from the use and if you don't like it or it doesn't work, you'll know fairly quickly. ASA is where I usually send people who are looking for info on medical uses.
posted by gingerbeer at 3:08 PM on January 20, 2017 [1 favorite]

When I first got my pot card, I found a reputable pharmacy and just went and told them what I wanted - here are my symptoms, here is what I'm trying to treat. I don't like to inhale things and I'm not huge into edibles. It was never about the high for me, only about pain and anxiety management. CBD products have been a godsend. They gave me a breath spray - one cinnamon flavored and one mint flavored - that are go to for drifting off to sleep and I also second the lozenges. All that is to say, experienced professionals can help find the cannabis product that works for you, just like pharmacists. Trial and error and gaining trust is key.
posted by buzzkillington at 1:26 AM on January 21, 2017 [1 favorite]

Have you checked out the AS groups on FB? There is a lot of discussion about success with CBD. There's a general AS group and one for women (don't know your gender). I'm a member of both.

Hope you find some relief. Big gentle hugs.
posted by dancinglamb at 10:11 AM on January 21, 2017