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#268116 - 08/22/14 04:41 PM My Story with Ankylosing Spondylitis and Marijuana
PrimalOcean Offline
First time visitor

Registered: 08/22/14
Posts: 1
I make this post rather reluctantly. The stigma and the legal issues alone are enough to hold someone back, but so too the intimacy of sharing one’s story of great physical pain. But I will make this post as I think it could benefit others.

Plain and simple, the medicinal properties of cannabis have radically improved my life since I discovered them for myself, about 18 months ago. Because of it, I no longer feel that I’m “losing” the war with my AS. Amazingly, it’s given me optimism about the quality of life for the first time in almost a decade. I have seen significant recovery in my mobility and mental state, and excitingly, the physical improvements keep on coming.

So before I get to the cannabis, I think I’ll need to give the full background. After all, there’s always the chance that I’m missing something in my disorder, or maybe even that my experience of the illness is somehow unique. So let’s dive right in…

I was diagnosed with Ankylosing Spondylitis sometime in April 2008. It was done by a rather cold and disinterested older doctor, and yet the fanfare upon receiving that diagnosis could not have been greater for me. I felt like a parade were about march through the room. Finally I had an answer that made sense for all the physical and mental discomfort I had felt for the prior two years.

When the disorder first presented itself in August 2006, it hit me with digestive problems and a great pain in my thoracic. I was treated for possible parasites, as I had just been in the tropics, and sent to physical therapy when the orthopedic couldn’t find anything wrong with my back. I continued to feel greater and greater physical pain. I was also under great stress at the time because I wanted to cram for the GREs to apply to grad school, and my goals were set upon attending the top schools. Suddenly I struggled to run due to pain, my usual relaxation activity, and I could not marshal the energy to do very much work. I became depressed, and the depression fed into the disorder, creating a very bad negative spiral.

My disorder peaked with its worst flare in December 2006. I thought I was dying from the physical pain, now throughout my spine, in my shoulders, in my hips, in my knees, in my ankles. It was so severe that I developed a significant limp and could barely get myself out of bed. Yet still the doctors could not find an explanation. My depression spun out further, and I developed panic attacks. I was convinced that there was something truly wrong with me, and upon a very depressing reflection on New Year’s 2006, I decided to do something about it. I decided that to not act, to not push forward, to not try to get better, would be a lot like letting myself die.

In January 2007, I ran through another round of tests. X-rays of my back still showed nothing out of the order. Blood tests came up negative. My family doctor suggested that it was depression, and that it was all referred pain. I had never thought this could be possible, but I really wanted it to be true, that I could simply take a pill and everything would be ok. I went on Prozac, and my mood really did improve. And with the improved mood, the flare ended. I felt still weak and some pain, but it was far better. Eventually, though, treating the symptom (depression), rather than the problem (the AS) was not enough. Eventually another flare came, which of course is depressing, and well…the result was an even higher dose of Prozac.

The trouble is, if you really don’t need the Prozac, there is a very good chance of you responding badly to it, or so I’ve come to understand it. The higher dose of the antidepressant led to tremors and nervousness, and to my horror, my doctor told me that the new symptoms were a sign that I had “bipolar 2”. Lovely stuff. So then it was on to Prozac combined with a mood stabilizer. Symbolic of my subsequent experience, I really cannot tell you the name of this mood stabilizer. I just don’t remember it…nor do I really remember much of anything from 2007. In supreme irony, it was the AS that really saved me. Eventually another flare came, and in a rather dream-like state, I decided that there really must be something else wrong with me.

In January 2008, I quit taking the mood stabilizer and the Prozac, and I set off to again look for answers. Amazingly, I had almost no withdrawal symptoms from the drugs. Of course, my doctor did flip-out. Sure, I’d love to say I did the responsible thing, but I really wasn’t in a place to make a responsible decision. I stopped cold turkey because I was, well, drugged out, in great pain, and - most of all - desperate. Still nothing was found in tests, but an eventual new GP did refer me to a rheumatologist. And there goes my diagnosis…I tested positive for HLA-B27, and I was told the pain I described was quite different from the sort felt with referred pain/depression.

It may be dramatic, but I like to think of my experience with AS as somewhat “Homeric”. The disorder’s manifestation and eventual diagnosis were my “Trojan War” of sorts. The experience was - metaphorically speaking - every bit as epic, bloody, and tragic. Meanwhile, the experience since, my experience of trying to “hack” the disorder, has been my “Odyssey”. Again, metaphorically speaking, since my diagnosis my experience has been every bit wandering and crafty…though this story is not yet done.

After the diagnosis, I was prescribed Celebrex, I felt a marked improvement in my physical symptoms, and so I accepted a position with a graduate school and began in the fall of 2008. I had deferred from the previous year due to my apparent “bipolar 2” disorder. Even though I was not feeling as good as I wanted, I now believed that I could improve my condition through proper treatment. Of course, what is “proper” treatment for AS has, in my mind, become slightly confusing.

So the first of many life turns took me the holistic route in treating my AS. Trying out holistic medicine might never have happened without a random two-week vacation before I started my masters program. I had worked previously in Honduras as a divemaster (just after college), and I had remembered being told about this fantastic Nicaragua island that offered a serene, quiet and very inexpensive place for retreat. The roller coaster, madness even, of my life the prior two years was about all I could think of. I reasoned I needed some time to process the experience, and consider my “hopefully hopeful” future.

The funny thing is, while I was on vacation, thinking about what medication I would take upon my return to try to get better, I…well…got A LOT better. Something about the relaxing vibe of the island, the contact with nature, the lack of stress seemed to work really well for me. I had almost no pain, and by the end of the trip I was no longer taking the Celebrex. That taught me right away that my emotional and/or mental state had a lot to do with my disorder. Then, a few good conversations with a fellow American, and a holistic nutritionist, taught me the natural foods I was eating on the diet could also be helping me. Another lightbulb went off as I realized I was having far fewer digestion problems on the island as well.

I returned from my vacation in Nicaragua to move across the country to a big city on the East Coast in June 2008. I was going to start a masters program, and I was going to start taking control of my health. I planned to do this through diet and lifestyle adaptations, or so I planned. The trouble is, there are a great many “healthy” recommendations out there, and very few that actually work for me in the management of my AS. So in an amusing summary, here is a list of the diets that I tried that did not work over the course of the following two years: vegetarian diet, vegan diet, raw food diet, blood type diet, alkaline diet, juicing diet, and the low starch diet. I also played around with some supplements, including colloidal silver, stinging nettle, saw palmetto, and cinnamon. The result was that for almost three years after my diagnosis, I never really felt like I had any control over my disorder.

In 2010, I decided to try out some medications. I was put on sulfasalazine. I had a rather atypical reaction to the drug and it stained all my body fluids yellow. The doctor said this was a possible side effect, and that it was harmless. The only problem was that I could no longer wear white shirts…that yellow stuff stains, no kidding. I toughed it out until after 6 months, the medication started giving me stomach aches and nausea. I was then offered to be put on methotrexate, but in all honesty, when I learned that a side effect was hair-loss, I decided I had had enough of “unusual” side effects for a while and I decided to return to holistic medicine for another try. (Basically…I was ok with yellow sweat, but hair-loss? Oh vanity…)

Thankfully, in 2010, I finally found a diet that reduced my symptoms. It was ultimately a version of the then newly popular “paleo diet”. I embraced a high fat, low carb, dairy free version of the diet and I felt better than I had in a long time. I joined a paleo club in the area and began a fascinating foray into the emerging field of evolutionary nutrition. Basically, if 99% of all past human generations ate a certain way, do you really want to be in the 1%? Through engagement with the “Ancestral Health Movement”, which includes other diets beyond paleo (e.g., Weston A. Price Diet), I discovered some fascinating science on the body and its needs. I’ve further moved to supplement my diet with Omega-3 supplementation, organ meats, and regular exposure to sunlight and nature. I also connected with many people who inspired me with their tales of curing or greatly improving their IBS, Crohn’s, epilepsy, diabetes 2, obesity, and other disorders with a “species-appropriate” diet.

The trouble with making improvements with auto-immune disorders is that you can get “greedy” pretty quick. With the paleo diet I dropped my daily pain levels from 7 to a 4. But after a couple months of this, I started asking for a 1. I discovered the limits to paleo. It would help me manage my AS, but not cure it. I began to wonder about taking a biologic drug. I had read a lot about them online and had heard some about them from my rheumatologist. I decided not to make a decision on taking the drug until I felt it was right.

Around this time, my post-grad school career was starting to take off. I was starting to travel a lot internationally, and the stresses of my work life were starting keep me in the office till late at night. My symptoms started getting worse. A year then whooshed by in a whirlwind of activity, and when I finally had some down time, I realized that that my physical pain was back to pre-diet levels. It was either that the diet was no longer working, or (as I eventually discovered) nutrition was not the only input into managing my AS disorder.

So, you can guess what happened next. I went to my rheumatologist and asked to be finally put on a biologic. My insurance eventually approved and I began twice-monthly shots of Humira. This was 2012.

My experience with Humira was really quite positive. It significantly reduced my symptoms, most effectively in combination with Celebrex and the Paleo diet. Of course, once again, I had found no “silver bullet”. When things were relatively quiet at the office, and I was taking my meds regularly, and eating well, I would still feel a few symptoms.

By the end of 2012, I settled into another period where I simply tried to just be happy with “good enough” in the management of my AS. I didn’t feel very much pain, but I felt so stiff, and it was common that I would tire out much sooner than my friends. Flares could still happen, so a return to the good old days of my physical vitality felt behind me. I was 30 years old, and I was trying to accept that there wasn’t any way around feeling like an old man. Ultimately, though, I just couldn’t accept it. I realized that deep down, I was and always will be a fighter a heart. I wanted more.

A swift kick in the butt came in the spring of 2013. A blood test caused my doctor to fear for my kidneys. In retrospect, strange readings could have well been a sign of my further diet tinkering, in particular the significant lowering of my body fat %. (An interesting experiment, but not all that conclusive.) I was taken off all my medications, and for the next two months, symptoms came back and I waited in great concern as to whether my kidneys were permanently damaged. Eventually, I was put back on my medications and simply told to drink a lot more water. The doctor really couldn’t explain what had happened. This experience was a bit rough, so I decided that maybe it was time to get “radical” in my treatment.

Around that time, a visit with a friend in Northern California re-introduced me to cannabis (the flowers of which are more familiarly known as “marijuana”). Frankly, trying the drug in a non-judgemental, non-stigmatized environment was incredibly helpful for me. Suddenly it didn’t feel like I was doing anything wrong. Suddenly it felt that maybe smoking a joint were not all that different - morally speaking - from smoking a cigarette or drinking a beer. The result was that I really enjoyed the experience. I had a lot of fun. And I noticed that the pain went away significantly while high, and was rather reduced for 1-3 days afterwards.

I began to wonder: What would happen with my AS if I smoked cannabis regularly? Eventually I decided it was an experiment worth trying. This experiment began around May 2013, and, well, it has been running ever since then. During this time I have consumed marijuana cannabinoids 1-3 times a week, on average, in either edible or marijuana vapor form (to protect lung health). The results? Staggering improvements in the quality of my life. And if you can believe it…I no longer take Celebrex or Humira Plus, I know I’m not done making improvements; the pace has only sped up in recent months.

Now, would I recommend it for you or anyone? Absolutely not. I am not a medical professional, and anecdote does not count as medical research. And furthermore, I have experienced real side effects. Though most of these I would call good, I cannot say what the experience will be for others.

But with that out of the way, I suspect you might be curious as to how exactly the the cannabis has helped me. I’ve done a lot of research, but at this point, all I or anyone else could possibly have is a theory. But theory I do have, so if you’re interested, I can present you my theory of AS and how cannabinoids interact with it.

(Alternatively, I’d recommend checking out NORML.org’s latest medical marijuana research summary on other auto-immune disorders, like Rheumatoid Arthritis and Multiple Sclerosis.)

My own theory of Ankylosing Spondylitis is that it is a biological mutation that connects your mental state with the immune system and, possibly, your digestive system, in a novel way. This connection is made possible by the presence of certain genes, typically among them HLA-B27, and perhaps activated during a time of great stress (as my own experience and many other anecdotes suggest). As a result, psychological stress results in your immune cells targeting certain tissues, among which include your tendons and ligaments. Scar tissue forms, and bone forms upon this, and may lead to fusion in the spine. Both inflammation and secondary trauma caused by the bone growth result in chronic pain. Similarly, if the digestive system is involved, then problems in digesting certain foods and bowel movements can develop.

That it is “psychological” stress that causes the primary mechanism of inflammation, and not physical stress, accords best with my experience. Of course, physical stress typically causes psychological stress, but that is not required. Physical stress would be anything related to the bodies efforts to put you back into homeostasis, and the main types of stress here - again, in my experience - are nutritional deficiencies/imbalances, poor sleep, lack of movement, and physical pain. Psychological stress, meanwhile, I would divide into six types: a lack of mental stimulation, anger/sadness, a lack of play, a lack of community/love, anxiety, and mental fatigue.

So here we have a rather holistic model. Cannabis enters into the picture when you look at how it acts upon the body and the brain. In other words, how it can reduce psychological and physical stress.

The body, well, this is pretty straight forward, or so we think. Some cannabinoids, CBD in particular, are now believed to be anti-inflammatory. Score 1 for marijuana as this, with respect to AS, can reduce overall pain, and in turn, reduce the overall psychological stress driving the disorder. Furthermore, if you have digestive problems, it has also been found that THC and possibly other cannabinoids act upon the digestive system - which has its own largely independent nervous system - to improve functioning. Score again.

Was this what I experienced with respect to my body? Yes and yes. The inflammation in my body went down, to the point that I stopped taking my Celebrex. And my digestion greatly improved, to the point that I had normal functioning and I could begin eating dairy and gluten from time to time, and even reincorporate the occasional sugary treat.

The brain, meanwhile, is where we must get a bit more speculative. As best as I have been able to research it, THC acts upon the brain in at least three pathways. First, it acts upon the brain by raising the frequency and divergence of your thoughts. So, thinking speeds up, and you get more seemingly random thoughts. This is what is called “divergent thinking”. Word association games, for example, become far easier for the “pot head”. Second, it heightens your sensory awareness, and part of this entails being able to alter your perception of pain. And third, it impairs other parts of the brain, particularly the parts that correspond to your time awareness. As I have seen it, this letting go of momentary worries can be euphoric or terrifying. (Whether it was due to my mind set or environment - or ‘set’ and ‘setting’ in drug research parlance - I was in the euphoric camp of the THC experience, so I was able to experiment with the drug.)

All of these alterations in the brain might help reduce psychological stress under the right circumstances. In my own experience, the euphoric creativity of the drug led me to greatly reduce the psychological stress in my life. This came through relearning the art of “play”, something many psychologists suggest for adults to do. The ideas I would come up with while under the influence ultimately led me to going on more fun adventures in my life, discovering yoga and dance, and getting out doors in nature more often. I also applied much greater imagination and fearlessness in my own life, I learned to have more fun at work, and I even took a chance and started a top PhD program to follow a passion.

The altered sensory perception also greatly reduced my perception of the pain, and even more importantly, it gave me a body awareness that ultimately allowed me to break up considerable scar tissue in my back through stretching and yoga. The scar tissue was mainly in my thoracic and cervical spine. As a result of this work, it no longer hurts to take a really deep inhalation, and even more spectacularly, during a three month hiatus before my PhD program, I took up the sport of freediving (aka ‘breath-held diving’). This experience, which ultimately took me down to 138 feet below the surface of the ocean, would never have been possible if I couldn’t have taken a deep inhalation, or allow my rib cage to flex with the ocean’s pressure. (In fact, I would never have though to try freediving but for the improvements I had made.) Beyond this, the altered sensory perception has also given me a much more heightened sensitivity to my nutritional needs and dislikes, leading me to even losing interest in caffeine and most alcohol (good red wine is the exception).

Finally, the loss of time awareness has opened me up to much more regular reflection in my life. Though I had previously undergone therapy to process a difficult childhood, the reflections while high have allowed me a much greater perspective to understand why things happened as they had. Another creative idea that came to me while under the influence was to write my own private memoir, a practice that had been suggested to me years before when I had been inaccurately diagnosed with depression.Writing this memoir over a period of six months had a profound effect. Though it was at times difficult, it gave me an incredible understanding of my life, of my faults and failures, strengths and weaknesses. And not to get too deep into it, it also gave me a way to really learn how to practice self-love.

Of course, the loss of time awareness also had its downfalls. I have certainly become more forgetful, but nothing that causes anything more than the occasional forgotten item. And in this, I’ve learned to adjust. In fact, it was through reading an originally anonymous essay by the late Dr. Carl Sagan that I got the very good advice to write down a clever idea whenever I had one.

So that’s my story, and one that is on-going. It’s been an exciting journey and I’ve learned a great deal. Much of my health today I have to credit with some traditional things like good diet and medications, but even more so I have to credit cannabis, and the lifestyle changes that it has led me to explore and adopt. Perhaps most incredibly, in my attempt at freediving, I stopped taking the Humira. And eventually, well, I realized that I now feel no different without it. In other words, with the exception of cannabis, I’m now entirely free of any anti-inflammatory or immune suppressant drug. I'd call that doing pretty good.

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#268127 - 08/23/14 03:19 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 490
Loc: Los Angeles, CA
Thank you for sharing your AS story. Wishing you happiness and continued success in your management of AS. Please consider enrolling in a research study http://www.spondylitis.org/research/current_recruiting.aspx

Kindest regards,
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#268132 - 08/24/14 11:12 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
An elegant post impo. That said as a "realist and nurse" a couple things to bear in mind which you may have already thought about. Driving while supplementing with MJ can be an issue so have a response developed. If you test + and are pulled over it is a crime in most states.

The mechanism of the disease not withstanding your goals and ideas which are great for discussion, is that the cytokine or protein tumor necrosis factor is a naturally occurring however in the case of arthritis and crohns disease causes inflammations and pain in proliferating and in amount. This was discovered by autopsy and led to the development of Remicade and other medications which attach to tnf and don't allow it to bind and in doing so reduce inflammation.

Best of luck. Your post is deep and positive. Thanks for posting.
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

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#268272 - 08/30/14 02:38 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
yehuda Offline
First time visitor

Registered: 03/22/11
Posts: 1
I’ll make this quick: I am 62 years old, symptomatic since I was in my early 20’s and finally given the AS diagnosis in my early 40’s. I’ve tried every pharmaceutical generally prescribed for this condition, ( other than the TNF’s due to possible side effects ) and experienced little relief or allergic reactions. My pain moderates between mild to severe. Having exhausted all the traditional AS treatments, I turned to cannabis 8 years ago. It has not stopped the progression of the disease, but it has greatly lessened my pain and improved the quality of my life.

One thing I will suggest is to explore options other than smoking it. Smoking any substance is bad for the lungs. There are other means to ingest it in the form of oils, tinctures and edibles. Many people find these methods quite effective.

Time to end the remnants of “reefer madness”, judging cannabis use as a moral failing and summarily dismissing it as having no medical benefits. It’s not for everybody, but for the millions of us who have found or desire cannabis medication, it should be readily available for medical use.

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#268311 - 09/05/14 09:39 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
cindyd Offline
Registered Visitor

Registered: 07/06/06
Posts: 862
Loc: Minnesota
I would start cannabis, in a heart beat. But for now, there are too many hoops to jump thru, in Minnesota.
Thanks for sharing your story.
Happiness and Health to you.

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#268566 - 09/25/14 09:56 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
jp93 Offline
Registered Visitor

Registered: 07/31/13
Posts: 122
Wow. What a great story. I have been terrified of the Humira that I'm taking and recently had an emergency surgery that almost became life threatening. I'm off Humira, or I should say I'm taking a break while I heal so that I don't risk infection. Ultimately I'm not sure that biologics for me are the right path. I so badly want them to be the answer but it seems anything good brings with it a risk. Whether that risk is acceptable I suppose is an individual thing. For me my neutrophil count is way down and that alone has me on edge. I feel like I'm totally unprotected. I'd be interested in an update on your treatment. Doesn't need to be as detailed unless you have time smirk

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#269486 - 12/04/14 05:52 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
JoelinWA Offline
Registered Visitor

Registered: 11/19/11
Posts: 30
Loc: WA
Thank you for your interesting post. I, too, have found cannabis medication - in the form of CBD drops, to work wonders for my A.S. I was diagnosed about 5 years ago, but have had the disease for over 20 years. My condition is quite severe, and my Rheumatologist has put me on 5 different TNF blockers, and they all worked for 3 to 6 months before they stopped working. But the pain in the SI Joint and lower back is very severe, and only methadone (a narcotic) can control the pain. I hate the side effects of narcotics and am always trying to reduce the dose, if possible. When I tried the CBD drops (a type of marajuana with only CBD and no THC), I was able to reduce my methodone dose by 25% to 35%!!! That was huge. Because it is that last 25% that causes most of the bad side effects of the methadone - so I was able to reduce the methadone side effects by 50%! (i.e. memory loss, forgetfulness, etc).

Also, when I started taking the CBD drops, my Simponi infusion I was on suddenly became twice as effective! I don't know if it was just a coincidence or not, but it was amazing. Every 2 months I get Simponi infussions, and they were working less and less, and the doctor was about to stop them, but then in combination with the CBD drops, the Simponi infussion works better than it EVER had worked! Amazing. So now, the combo of Simponi + CBD I am able to reduce my pain med by over 50%!! Along with improvements in other symptoms.

All to say, I never expected this result and am amazed that more doctors don't use this drug. I have never smoked a cigarette in my life and I don't smoke marijuana. I just take the drops made from the plant - and made from the special CBD species.

I also write this so others my benefit. (My alternative med doctor, who gave me the prescription for the CBD, suggested I write a blog about my case so others may learn.)

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#270108 - 01/26/15 02:02 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
timmayock Offline
Registered Visitor

Registered: 01/20/15
Posts: 2
Hi, Here in Connecticut i have a licence. I got my licence by saying i had Post traumatic stress. I do have problems with anxiety. I was really disappointed that chronic pain is not a approved reason for medical marijuana. I just started cooking with it and I cut the recipe in half. where a 1/4 ounce per stick of butter is called for, i use an 1/8. It works better this way as opposed to smoking; more controlled and a longer lasting effect. I used a strain that is high in CDBA this time. My first batch was street purchased and it worked better than smoking. I don't think i will go back. I don't get the paranoia I got from smoking high THC pot. I would like to explore the tinctures.
It is great to share and hear others having positive experiences with this disease.

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#270347 - 02/17/15 11:03 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
EdKociela Offline
First time visitor

Registered: 02/16/15
Posts: 1
I had read volumes, both pro and con, regarding the use of marijuana in relieving patients with a variety of ailments, most of it, unfortunately, anecdotal. Here's another bit of anecdotal evidence: it works. There is no need for large quantities, no need for the couch-lock amount. Just a bit seems to unleash the anti-inflammatory properties of the herb to make life manageable and to feel what might be termed "normal." As a longtime sufferer, I have been taken my share of prescribed meds, some dangerous, others ineffective. Atone point I had a doc who was a huge proponent of pain meds. However, it is difficult-- and unwise -- to get into a heavy regime of painkillers like Lortab, Demerol, and the others. It is also unwise to rely on a handful of Tylenol or Ibuprofen, which tears my stomach apart, on a daily basis. MMJ is something you can regulate and use as needed. A couple times a week and the quality of life improves tremendously. I cannot speak from a scientific viewpoint, I don't have the credentials to do so, but I do know that it is true that the anti-inflammatory properties of MMJ do, indeed, offer relief. I wish all my fellow sufferers peace and comfort.

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#270496 - 03/06/15 01:21 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 490
Loc: Los Angeles, CA
I'm not taking meds including MM. but I am interested in all things Spondylitis. My understanding is that MM has shown efficacy for insomnia, anorexia and anxiety and possibly depression (anxiety and depression are almost uniformly concomitant).
It is rarely studied and when it is, its under very controlled circumstances allowed in human research trials via FDA policy. So, most of this data is from Canada. Although it doesn't seem indicated for pain, if your pain is related to insomnia, anxiety, depression then it could help and is probably better than alcohol or narcotics. ingestion seems much better than smoke given breath issues associated with AS. Also, heavy machinery ie driving could be dangerous.

smoking, AS & yoga - I personally have a hard time imagining inhaling smoke of any kind being helpful for AS. I do suspect -ironically- smokers (and former smokers) are good at pranayama (breathing exercises in yoga). I also suspect that smokers miss the process/ritual of breathing deeply. I'm happy to teach some yoga pranayama techniques if anyone is interested. I never charge my spondylitis community for yoga lessons.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#270505 - 03/06/15 06:05 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
Shirley Offline
Registered Visitor

Registered: 10/24/11
Posts: 971
Loc: Wellington, New Zealand
It's not legal here, if it was I would probably have tried it just now as pain is interfering with my sleep. I don't think I would have smoked it (I have asthma), but I like the sound of a tincture someone mentioned somewhere that doesn't contain the part that makes you high.
_________________________
Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.

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#273191 - 01/29/16 12:18 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
obrienk84 Offline
Registered Visitor

Registered: 01/27/16
Posts: 47
I've smoked weed on and off for 15 years, and can say that CBD cannabis, including edibles and mouth spray, works pretty well for treating pain. This is a specialty product, however, that you can probably only get in CA/OREGON/WA/CO.

I don't like high THC cannabis for the pain though--that seems to increase it at times, with the anxiety as well.
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Early 30's male, HLA Negative, AS diagnosed Feb. 2016, Humira.

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#273325 - 02/12/16 02:55 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
Giraphe Offline
First time visitor

Registered: 02/03/16
Posts: 1
I'm going to a little known, relaxing Nicaraguan island next month, possibly the same one. I hope my experience matches yours!

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#273454 - 03/02/16 09:41 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
JoelinWA Offline
Registered Visitor

Registered: 11/19/11
Posts: 30
Loc: WA
Just a quick update - after being on Social Security Disability for 7 years, now, with combo of CBD tablets (I don't smoke it) and TNF blocker (Simponi infusions), I now am off SSD, back to working full-time again 6 months now, with a quality of life I never thought I was ever going to have again. It still is working. I hope others find it helpful.

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#273558 - 03/10/16 11:52 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
LanaLee Offline
Registered Visitor

Registered: 01/29/15
Posts: 11
What do you all think of the traveling limitations of being on cannabis? I haven't started yet but I am about to and I find that it may be very frustrating to travelers who would really want to get the most benefit from their drugs WHILE ON vacation. How ridiculous is it that you are allowed to have it in your own country but banned in others. So what do you do when you're traveling? How does the disease respond with a sudden ceasing of the marijuana? If you're licensed, you should be licensed everywhere. How does one just go off their drugs?

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#273738 - 03/25/16 10:19 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: obrienk84]
Beyondpain Offline
Registered Visitor

Registered: 04/05/14
Posts: 3
I've been approved for MM for over a year but in NJ you don't have many options. No edibles, vape pens, etc. and I can't smoke it because of my lungs.
I do agree with you on the thc and anxiety, also not helping with pain. Hopefully NJ will offer oils and other means soon.

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#275285 - 07/09/16 09:45 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
JoelinWA Offline
Registered Visitor

Registered: 11/19/11
Posts: 30
Loc: WA
Just a quick follow-up: The CBD with TNF blocker combo is still working (and keeping the same TNF blocker working - after all these years)! Now I take the CBD drops just 1 day per week (3 or 4 times that day).

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#275838 - 08/30/16 02:50 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
RachelK Offline
Registered Visitor

Registered: 04/14/16
Posts: 42
JoelinWA, thanks so much for posting this! Have you noticed any impact on fusion / disease progression?
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POTS (dx 2004), AS (dx 3/2016), benign hyper mobility syndrome (4/2016) and other stuff. HLA B27+ with family history of AS. Enbrel and Indomethacin since 6/2016.

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#278071 - 05/28/17 12:36 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
youngatheart Offline
Registered Visitor

Registered: 01/31/12
Posts: 12
Loc: Folsom, California
Thank you for your inspirational story. I know you wrote it a few years ago, but I've started to explore CBD oil as an option for treatment, so it's relevant to me now. I could relate to so much of your experience, except I am a 61 year old woman, diagnosed with AS in 2011. I tried a number of alternative treatments (acupuncture, Bowen therapy, ice packs, massage, cleanse diets, juicing) before I went to the hard drugs. I tried 3 or 4 before my doc settled on my cocktail of Metho and Simponi. I've been on these meds for about 6 years, and I'm concerned about my liver results, my ALT & AST results are super high and scary now. I want to get off Metho & Simponi and try CBD oil. I worry about the degeneration without the Simponi, so I'm reaching out to the AS community to see if anyone has any input on CBD oil without THC. I'm not interested in getting high. I lived that life many years ago, but I've been sober for 10 years, so I don't want to use any mind altering substances smile Thanks!


Edited by youngatheart (05/28/17 12:36 PM)
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61 yrs old, female. Diagnosis: AS 1/2012. Current meds: Methotrexate, Simponi, Folic Acid, Prednisolone drops for Iritis as needed. Love Aleve, but not good for my liver.

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#278183 - 06/12/17 03:56 PM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
Anja Offline
Registered Visitor

Registered: 07/26/16
Posts: 17
Hi, youngatheart.

I just got started on medical cannabis, which is legally obtained in my state through a dispensary. Before that, I used CBD-only tincture/oil.

CBD has become a bit more popular now and there are more options available than there used to be. The downside to that is that the resulting product tends to be devoid of many of the other aspects of the cannabis plant that make it effective. The company that I've used and trust is called Endoca; their hemp oil drops with high CBD don't have THC. When taken regularly, hemp oil can help with general inflammation and wellness, but it's not a miracle cure. It also didn't alleviate my pain until I started using whole plant cannabis products, with balanced CBD and THC. If you use a strain, such as AC/DC that has well-balanced levels of THC and CBD, you don't experience the head-effects of being high. I know other medical cannabis patients at my dispensary who are sober but still use cannabis products without damaging their sobriety. The only change they make is using glycerin-based tinctures rather than the alcohol-based tinctures.

All that being said, I still wouldn't risk going off a biologic. No matter how better cannabis may make you feel, it can't "cure" us of AS or stop the inflammatory process that causes permanent damage. I would perhaps look into weaning off the methotrexate and staying on the Simponi, plus adding medical cannabis.

I'm happy to chat more about my experience with this. I'm still new to having an AS diagnosis as well as using medical cannabis, but I'd like to offer whatever help I can.
_________________________
Female, early 30s. Dx AS July 2016, symptomatic 13 years.
Current meds: Cimzia (200mg injections every 2 weeks) since April 2017. Tramadol (50mg every 6 hours) since January 2017. Medical cannabis tincture/oil/oil vape
Ineffective meds/ intolerance: Enbrel (6 months). MTX w/ folic acid (2 months). Plaquenil (3 months). Prednisone (1 month).

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#278250 - 06/16/17 09:01 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: PrimalOcean]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 142
Mmj may be helpful for you, but it is not proven to even slightly slow progression down. I've had painful flares and mj would not work for me. Plus when you are in need of real treatment after years of taking mmj no doctor would recommend opiod treatment which is the best pain reliever for this disease. Though mmj is helpful for you now I would recommend it to anyone to take a disease altering drug with it to slow progression down and it is shown that it only has anti inflammatories properties and would not be a better choice then nsaids.eventually the disease will progress where you wish you took the drugs that were fda approved. Because you will need morphine and still be in pain...
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Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed

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#278680 - 07/31/17 09:41 AM Re: My Story with Ankylosing Spondylitis and Marijuana [Re: Thesnakejakw]
Anja Offline
Registered Visitor

Registered: 07/26/16
Posts: 17
I agree that medical marijuana won't counteract AS disease progression and that a biologic is the way to go. However, I don't think it's helpful to make sweeping comments about what does and doesn't work for pain. Everyone's bodies are different. I do take opioid pain meds in combination with medical marijuana, both of which I use under the advisement of (and full support from) my rheumatologist and primary care physician. For me, my pain has been much better managed on medical marijuana. Additionally, my inflammation levels have dropped since starting to use it. For some people, it does help.
_________________________
Female, early 30s. Dx AS July 2016, symptomatic 13 years.
Current meds: Cimzia (200mg injections every 2 weeks) since April 2017. Tramadol (50mg every 6 hours) since January 2017. Medical cannabis tincture/oil/oil vape
Ineffective meds/ intolerance: Enbrel (6 months). MTX w/ folic acid (2 months). Plaquenil (3 months). Prednisone (1 month).

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