Read the Foundation’s official CBD Guidance for patients.
We recently connected with rheumatoid arthritis (RA) patient and Arthritis Foundation volunteer Ron Lev to find out more about his personal experience with CBD. Ron was formally diagnosed with RA 27 years ago and currently leads an Arthritis Foundation Connect Group, providing support to other arthritis patients.
ARTHRITIS FOUNDATION: Thank you for taking the time to chat with us today, Ron. First off, do you use prescribed medications to manage your RA symptoms?
Ron: Yes, for overall management of my RA, I use rituximab.
ARTHRITIS FOUNDATION: I also see that you have used CBD to help with your pain. What made you decide to try CBD?
Ron: In one word — steroids. Pretty much since day one of my RA diagnosis I was put on prednisone, and for the following 23 years, was a real addict. Trying to quit steroids, I always ended up in pain. And we all know what harsh side-effects steroids have, especially when taken long-term.
I began using CBD oil and, in parallel, with steroids so that I could reduce my steroids intake. I began cutting my prednisone to half dosage, and then to quarters. By the end of the third week, I just felt I no longer needed steroids. It’s been four years and I have never looked back. For overall management of my RA, I use rituximab.
ARTHRITIS FOUNDATION: With the rise in awareness of CBD products, where did you find information on CBD?
Ron: It all started with a scam. Around five years ago, I was targeted with an online ad urging me to try a CBD oil bottle for only the shipping cost. I thought to myself, heck, why not? Well, little did I know, it was a scam. I did get a bottle of oil, but also went on an auto-charge plan for a whopping $100 a month! Getting off their fraudulent scheme was tougher than terminating cable television, but I finally did it.
This sparked my interest in really researching the topic of CBD. I learned all about the hemp plant and the naturally occurring substances within it. I also learned that there were many more cannabinoids in addition to CBD and how all these interact with our bodies.
ARTHRITIS FOUNDATION: That must have been very frustrating. When you decided to start researching on your own, how did you decide what form and dosage of CBD to use?
Ron: With so many products out there (many of which of very low quality) and with little to no regulation over the market, I decided to source my own raw material and create my own oil blend. I know, pretty adventurous.
After thorough market research and some recommendations from trusted sources, I found my source, detailed my specifications, and requested samples. I was ready to experiment. I decided to start low and gradually increase my dosage. I began with 1/2ml twice a day, and after a week, I felt fine, so went up to 1ml twice a day, then up to 2ml. I didn’t experience any side effects. After a year when I was feeling good, I begin to dose down, going to 1.5ml a day from 2ml. It worked well for me.
ARTHRITIS FOUNDATION: During your experimentation to find out if CBD would work for you, did you discuss CBD with your doctor?
Ron: Having had RA for so long, I have learned to adopt an active/pro-active approach. I most often do my own research and homework and then come to my rheumatologist with my ideas and suggestions.
I have honest and open communication with my rheumatologist but decided to try CBD for a few months to see how my body reacted before discussing it. I’m not saying this is the right approach for everyone, since it depends on your type of arthritis, disease activity, other medications, etc. When I shared with him that I didn’t need the steroids, he respected my decision, although he said he couldn’t recommend CBD.
In the case of CBD, or rather hemp oil (and cannabis in general), most MDs will refrain from actively approving such treatments simply because they have to follow the traditional guidelines of medicine with recommendations supported by substantial clinical trials if not completely approved by the FDA.
ARTHRITIS FOUNDATION: Thinking back on the entirety of your experience with CBD, what advice would you give other RA patients about using CBD?
Ron: I think three things are very important to remember:
- Give it some time. People tend to expect an overnight miracle, and in the case of systemic diseases like RA, it just won’t happen. Cannabinoids need time to interact with our own endocannabinoid system and to interact with the relevant receptors within our cells. Give it time — it can take weeks, or even months to work. And, yes, it may not work at all. But if you won’t give it a fair chance, how would you know?
- Use trial and error. Like with any medication, there’s no “one-fits-all” formula. There’s a lot of trial and error involved both with dosage as well as with the substance itself. You might be lucky and find your perfect match on your first trial, but you might also have to go through a few other products to find the one that works for you.
- Don’t believe everything you read and hear. There are many people out there who are in the CBD space “for the ride” (Amazon is full of super cheap CBD products with specifications that don’t even make sense). Do your research and talk to others in your condition that found relief. There’s nothing like that patient-to-patient trust.
ARTHRITIS FOUNDATION: Ron, thank you for your time today and for sharing your story.
To learn more about CBD, visit the Arthritis Foundation’s website. Want to have your voice heard? Participate in a collaborative survey on medical cannabis from researchers at the University of Michigan, McGill University, the Arthritis Foundation and the Arthritis Society (Canada).