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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.
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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.
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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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