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Living with Psoriatic Arthritis (PsA)

Medical Marijuana Journey


#1

Hello Everyone.

I am here to share my journey with medical marijuana in Canada. I have just been issued a prescription for this treatment and would like to share the experience with all of you. This way you can be informed on the option, and the journey to see if perhaps this is a route that would work for you. Please feel free to ask any questions. I will update as the journey progresses.

My back story: I have had PsA since I was a small child. I had developed a tolerance for Tylenol 3's by age 16 and just stopped taking pain pills and learned to "deal with it". An example of my pain tolerance would be when I broke my ankle at age 19. I shattered every bone in my ankle, tore every tendon and ligament (foot just hung there) and severed every nerve - and I did not cry or ask for pain pills because I could "handle it". I went into remission for 15 years or so, suffering only minor aches pains in my 20's and early 30's - again no need for pain pills or medications of any sort. BUT, in my mid 30's I developed the most intense pain in my SI joints, hips and shoulders. This spread to wrists and fingers quickly and left me often unable to sleep or sit or walk. I was given prescriptions for Oxycodone and Percocet - which made me numb but let me sleep. I used these sparingly. I had 2 children and did not like the lack of concern/care I felt on these drugs. I decided to only use them in cases of extreme pain. I would go through 30 a year, maybe. Still they started to be less and less effective. I needed 2 instead of 1, needed them every 4 hrs instead of 6. In February of this year I ahd the most awful pain of my life. (worse than natural childbirth, I kid you not). I couldn't move my head, sit or lie down, open my eyes even and went to the hospital. I had PsA in my spine and neck so bad that there was immense pressure on my spinal cord. I was given Torodol mixed with Demerol and morphine and hospitalized for 5 days stoned out of my skull. I developed rashes and was given injections of Benedryl. I was given synthetic opioids and still developed the swelling in my face and the rashes. I WAS INTOLERANT OF OPIOIDS NOW.

What do you do for pain? I was given Tramadol - useless stuff. I asked to see a Doctor at the Chronic Pain Clinic at the Toronto General Hospital for help. It took a few months to get in, referred by my family Doctor. We sat down and talked about my situation. My pain medication story. I do not have pain everyday like I once did. I do not need pain medication daily. Like I said, I used maybe 30 a year. I was afraid of the addictive properties of many pain medications, so my rule was that I had to have 3 or more joints in bad flare to take pain meds. So maybe a few days a month I would need relief. My intolerance was an issue. There are pain medications that a person can take that accumulate and work by taking them daily - but I didn't need that. Otherwise, they are opioid or synthetic opioid or not strong enough for my level of pain. I was referred to a chronic pain management course to earn how to cope with chronic pain, meditation etc. Great - can help, useful but not a solution. The Doctor was stumped.

I asked about Medical Marijuana. I had read about it online as a useful drug for inflammation and pain. He thought about it. It was interesting. I was actually a perfect candidate. It is non-addictive (no matter what you were taught). It does not cause damage to an adult brain. less dangerous to your body than all other pain medications and better long term for that reason. As a matter of fact, I learned that our brains are made to accept marijuana built for it. We as humans have receptor sites in our brains that only are used for receiving cannaboids. That means that cannabis has been used for so long in humans that we have developed a way of using it most effectively. For opioids, we use the Dopamine receptors - they have not yet developed their own receptor in our brains (evolution). However, he had never issued a prescription and would have to look into the policy and procedures. Come back in a month and we will go over it. He thought it was a good idea to explore. When I came back, he said we were going to go try it. He had to get in touch with the hospital administration on how to prescribe it, find a distributor for me and get all of the information. He also didn't say it - but he had to do some back ground work on me. He contacted all of my Doctors and told them what was in the works - were there any reasons that they knew of why he should not give me this prescription? Was I a druggie or pot head looking for a legal way? Come back in 2 months.

In fact, I had never smoked a joint, or tried any illegal drugs in my life. I knew plenty of people who tried it in school, but I never did. Always curious, always afraid of my mother. With the information that I was going to be given a prescription for marijuana, I turned to a friend who is connoisseur of marijuana ( a lawyer at that) for advice. Do I have to tell my boss if I have this prescription and may be stoned at work? NO! not unless you m,ay be a danger to yourself or colleagues (ie a forklift operator, school bus driver etc) Aws an office worker - no one needs to know. how best do I take it? Vaporize it. Handy tools, no damage to lungs or throat, no smell, subtle. And he came over with a bin - larger than a laundry hamper of all of tools. He had bongs, silver bullets, vaporizers etc. He had samples of different "pots" both medical and recreational. Wow - this was intense. He taught me the difference between the two. I want a high CBD content for inflammation. This is not the stuff that makes you "high". He lite up a bong and I tried the medical grade pot for the first time in my life. Not much felt different. It was strange to be huffing on a bong in my backyard with the kids in the house (aware that this was prescribed and not to be taken lightly). After 3 or 4 puffs I felt a little haze - similar to 2 glasses of wine with dinner. But I also felt some relief in my Si joints. Serious relief. I could sit without squirming to keep my joints from stiffening. We had dinner, no munchies to mention. Then he asked me to try the recreational stuff - so that I would know the difference in feeling and experience. This time we tried the silver bullet thing - this was lite - and inhaled smoke in a fancy stainless steel thing with complicated filters. I coughed a bit with this one. And I got high with this one. I felt light headed and floaty - similar I might add to taking 2 OxyCodone. But it gave me energy. I was running around tidying and doing things I have not been able to do in years without groaning. It lasted about 4 hours. I hurt a little more when it wore off. I had overdone it - learning process. I still had no prescription in my hand - but I had knowledge and understanding. I knew it could work. A good thing to have before you spend good money on a vaporizer or prescription.

So I go back to the Doctor, I confess that I have tried it. He was not judgemental, he thought it might even have been a good idea. He has the information on the grower/supplier he wants me to use. it is important to get trusted marijuana and know what you are getting. He writes the prescription. It must include the grams, the method of use (vaporized) and the dosage details. I have to send it in the grower and they will contact me (a nurse) to discuss the options, what varieties may work best and how to do this. I am at this stage.

Laws in Canada changed this Spring. You can no longer grow your own marijuana. You must get it from an approved/registered grower. This has limited the available supply. There is a backorder of 10-12 weeks before mine will come in the mail. I will get a card in the mail soon stating that I am a customer of the registered grower. This is not a license to carry. The prescription bottle with my name etc. is the closest thing to a license that we have in Canada right now. So if you are carrying it out with you, be sure to have this. However, the card is often accepted. Law enforcement has not always caught up with the new regulations, and I shall have to wait and see how it goes.

I do not have my medication yet - it will be 10-12 weeks. I will get a vaporizer that looks like an asthma inhaler to carry ($134) and that is how I will take my medication. I will update you on the process and progress as it develops if anyone is interested.

Nic.Pat


#2

Most interesting, Nic.Pat. With the Canadian laws being so new, I’ve wondered about the mechanics of prescribing, purchasing and administering. I’m sure this was a very interesting project for your pain doctor. You’re lucky to have found a practitioner who was willing to figure out how all of this works.

I’m sorry that you have to wait so many weeks before you can start the main course of the experiment!

Thanks for posting, and keep us in the loop!


#3

Thank you for this! I’m very interested in reading more and seeing how the meds work for you. I live in Vegas where we can get a medical marijuana card and it sounds like an option I’d like to try.


#4

If ever there was an appropriate candidate... it seems it would be you. Goodness. I hope it works.

A friend of mine uses some sort of cannabinoid oil- it's low in THC- and it works on his stump (he had his leg removed just below the knee) when nothing else did. I also have another friend that has had over 60 surgeries and uses medical marijuana, and it works for him. Might cause some anxiety if you have a propensity for that, and the effects last to a certain extent for 24 hours. There's a ton of data on it at the US National Institute of Drug Abuse website, but most of that is about how huge doses impact people, so take it with a grain of salt (unless you're planning on binging, which sounds unlikely). I'm not sure how the doses are in Canada, but take it slow at first, and make sure you've got some healthy snacks on hand. :)


#5

I keep waiting for the law to change in PA!! I know this will help with the stress of living with chronic pain and the bitterness that I feel! I cannot wait to start this journey!!


#6

I am having so much trouble posting today!! So I will make it quick. Marijuana, taken in oil form is the only thing that has given me any relief in years now. With lots less risk than prescription pain killers or over the counter stuff. I take a very small dose of the oil at night before I go to bed and it helps me relax and I wake up without pain and I am limber enough to actually put my own shoes and socks on for the first time in several years.

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I hope that some of you will jump on the bandwagon and help us try to get MJ totally decriminalized and soon. Making it legal for medical use sounds good but only a few states have managed to make sure that the patients who need it are getting it like they should. But by decriminalizing it across the board would allow everybody who could afford it get it. And the prices would be cheaper than they are right now. So find out who your congressmen are and start fighting for something that would probably help almost every single one of us here


#7

I am in Colorado, so that makes things easier for me legally. But I have been thinking about this, as I am having problems controlling pain at night, and hate the worry of getting addicted to opiods. I too have kids, so I think nights (with my husband home) would be the only time I would use it. Can anyone give a idea of how much it would cost? We can grow for personal use here, and since the pot - tourisum thing is so big here, it’s expensive to buy in shops. I don’t want to smoke it. Oil form sounds easy, do you mix it in something? Or a vaporizer… I have no experience beyond some pipe and bong smoking in high school…haha! Never was my thing, I really hate feeling out of it so I would only be interested in the low THE high CBD strains. Anyways, please update here along the way, I am so interested to hear how it works out for you!


#8

I am so pleased to see this post. I moved to Oregon a few years ago, and medical marijuana is legal. My major question is this: Does marijuana (or CBD) stop the progression of psoriatic arthritis?

I could use some pain relief. But my big concern is how to stop it from progressing. I was diagnosed just a year ago and so I am a newbie here.

Does CBD reduce inflammation?

Is reducing inflammation all that is needed to stop the progression of PsA? Or does the illness exist anyway but reducing inflammation just makes the pain go away?

Thank you!!

Ann


#9

Hi Anngreen,

It does not stop the disease. I take Enbrel and Indomethacin for that. It does help with pain and anxiety. I didn't even realize that I suffered from anxiety until I really thought about it and spoke with the chronic pain clinic folks. Many times, in the midst of a flare, I fret over "How am I going to do this?" and "It just can't get worse" and "But I have to get this done" It took all of that away as well as ease the pain :)

Nicole

anngreen said:

I am so pleased to see this post. I moved to Oregon a few years ago, and medical marijuana is legal. My major question is this: Does marijuana (or CBD) stop the progression of psoriatic arthritis?

I could use some pain relief. But my big concern is how to stop it from progressing. I was diagnosed just a year ago and so I am a newbie here.

Does CBD reduce inflammation?

Is reducing inflammation all that is needed to stop the progression of PsA? Or does the illness exist anyway but reducing inflammation just makes the pain go away?

Thank you!!

Ann


#10

Australia has so far to go when it comes to medicinal marajuana. I would rather take that than the tramadol knowing its addictive. After 6 months of taking it, increasing the dose, it seems I’m feeling more pain each day again. Pretty frustrating.
Hope you find relief.


#11



NotGivingUpMyLife said:

I am in Colorado, so that makes things easier for me legally. But I have been thinking about this, as I am having problems controlling pain at night, and hate the worry of getting addicted to opiods. I too have kids, so I think nights (with my husband home) would be the only time I would use it. Can anyone give a idea of how much it would cost? We can grow for personal use here, and since the pot - tourisum thing is so big here, it's expensive to buy in shops. I don't want to smoke it. Oil form sounds easy, do you mix it in something? Or a vaporizer.... I have no experience beyond some pipe and bong smoking in high school...haha! Never was my thing, I really hate feeling out of it so I would only be interested in the low THE high CBD strains. Anyways, please update here along the way, I am so interested to hear how it works out for you!

#12



Nic.Pat said:

Hi NotGivingUpMyLife,

Recommended dose is a LOW THC and high CBD strain. You do not get high, as such. Less "high" than OxyCodone in my experience, although everyone is different. Similar to a beer or 2. So I am not worried in front of the kids. I have been told be everyone in then "know" (friends who are nurses and patients) that the pill form of CBD is garbage - doesn't work. Vaporized is the most effective for medical purposes. Cost - not there yet. I am waiting for the nurse to call me back with more details, as the drug becomes available (10-12 weeks - sigh) The vaporizer is $134. You only use 1 bud a day, during a flare - so it seems to be quite reasonable. Less than $40 a month, I think based on online searches. I will share more details when I know more. Oil sounds harder to regulate and dose. It is not prescribed here - just pills or vaporized buds.



NotGivingUpMyLife said:

I am in Colorado, so that makes things easier for me legally. But I have been thinking about this, as I am having problems controlling pain at night, and hate the worry of getting addicted to opiods. I too have kids, so I think nights (with my husband home) would be the only time I would use it. Can anyone give a idea of how much it would cost? We can grow for personal use here, and since the pot - tourisum thing is so big here, it's expensive to buy in shops. I don't want to smoke it. Oil form sounds easy, do you mix it in something? Or a vaporizer.... I have no experience beyond some pipe and bong smoking in high school...haha! Never was my thing, I really hate feeling out of it so I would only be interested in the low THE high CBD strains. Anyways, please update here along the way, I am so interested to hear how it works out for you!

#13

Hi Jessica,

I am so sorry to hear that. I understand your concerns. I love Australia - on my list of places I have considered moving. Perhaps I can wait. lol

Jessica said:

Australia has so far to go when it comes to medicinal marajuana. I would rather take that than the tramadol knowing its addictive. After 6 months of taking it, increasing the dose, it seems I'm feeling more pain each day again. Pretty frustrating.
Hope you find relief.

#14

It works for me. I live in CA and have excellent access to grade A cannabis and cannabis related products. It helps with sleep, pain, and mucle spasms for me. Its something I think everyone should try b4 pain meds.


#15

I am paying 35 bucks for a gram of the oil. One gram will last me about a month, best I can figure. But in order to get it, I have to jump thru hoops and hope for the best. We are trying to grow some that we will adventure into the art of making the oil ourselves. There is some risk to that but I think we can do it safely. Yes, I think for PsA, taking it at night works well. You sleep thru any real high feeling and wake up in the morning refreshed. And I do think that MJ could stop the progression since it fights inflammation. There is lots of anecdotal discussions out there about how MJ reverses auto-immune diseases of all sorts.

PS, I first tried some very low THC, high CBD oil and it did nothing at all for my pain and didn't help me sleep. We need to get over our fear of THC, because if you take it daily and build up, you will find yourself not getting high off of incredibly large doses according to the people I get my oil from. I am hoping, that for the sake of expense, that the really small dose continues to be enough for me, for a good long while.


#16

I have long thought that I would prefer to use Medical grade MJ than the opiates that I'm currently prescribed. I'm just waiting for the State of Oklahoma to figure out that it is something they should legalize. Sigh. Since it IS Oklahoma, I'm guessing I have a really long wait.

My big problem with using Cannabis is that I have spent 18 years trying to be a good example to my kids. I don't do drugs, I don't lie, I don't cheat, and I don't steal. I try to treat everyone with dignity and respect. Shoot, I haven't had more than a glass of wine or two in the last 18 years either! So until it is legal, I won't be partaking. I'm not going to be one of those parents who say "do what I say, not what I do." So, State of OK: Hurry up, already!


#17

Hi tmbrwolf329 - I have been of the same mind. I had a long discussion with my kids about medical marijuana versus recreational. I explained the difference - the studies that showed that MJ can damage a developing brain in a teenager, and the concept of prescriptions and trusted sources regulated by the government. My son, ever wise, said he preferred the thought of me being on MJ to opioids which he learned are scary in school. Kids can be very smart and the laws do make it legal if prescribed here or I wouldn’t be doing it either. Another reason to try and get it legal everywhere!
Nic.Pat


#18

nic.pat: I'm really glad you are posting this. I know that things are looking up for country-wide approval (even though my state will be one of the last, as mentioned above) It will be nice to follow your journey so that when the rest of the states finally get to legalization we will have had a chance to read about your experience. Making informed choices is so much better than going at choices blindly! :)


#19

I have commented previously of the immediate relief I got from the horrible itching (pruritis, presumably)I suffer from in my particular hell of PsA through marijuana. I know there are many ways pot can help us and at 64, disabled by my PsA, I think we can dispense with the hand-wringing and worrying about the evil “maryjane”. I can’t use the biologics (TB risk) and mtx is out (internal damage) so medically that leaves me with diclofenac misoprost which screws up digestion some. So, the point is, if something as relatively benign as pot helps then I, for one, have no issues, except perhaps expense. [$300/oz.]. At least pot doesn’t wreak havoc on the various bodily functions that all the other palliatives our doctors prescribe. And mentally? For me,a good early evening flare-up is as bad for me mentally as it is physically (what’s the difference?)and pot eases the symptoms. And that’s all I have to say about that.


#20


I am interested in your itching. Where was it and how bad was it? And how did you find out it was because of your PsA? I have had about 8 years of my arms itching like crazy all the time. Lyrica did work against it but I decided I wanted off pharmaceuticals when ever possible. I am using MJ for pain and I am sitting here realizing that I haven't been itching for awhile. But I am also now wondering if my itching was just another clue to my diagnosis
TVP said:

I have commented previously of the immediate relief I got from the horrible itching (pruritis, presumably)I suffer from in my particular hell of PsA through marijuana. I know there are many ways pot can help us and at 64, disabled by my PsA, I think we can dispense with the hand-wringing and worrying about the evil "maryjane". I can't use the biologics (TB risk) and mtx is out (internal damage) so medically that leaves me with diclofenac misoprost which screws up digestion some. So, the point is, if something as relatively benign as pot helps then I, for one, have no issues, except perhaps expense. [$300/oz.]. At least pot doesn't wreak havoc on the various bodily functions that all the other palliatives our doctors prescribe. And mentally? For me,a good early evening flare-up is as bad for me mentally as it is physically (what's the difference?)and pot eases the symptoms. And that's all I have to say about that.