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Members of the Sjogren’s Syndrome Foundation (you can become a member and browse their excellent site here) receive a newsletter packed full of valuable information. Volume 37, Issue 09 October 2019 is no exception. Among other interesting topics, the Q & A ASK THE EXPERTS section contained this timely question:
The use of CBD oil has been in the news a lot and I’ve heard it mentioned to help treat Sjogren’s. What is CBD oil, how can it be used to treat Sjogren’s patients and has this treatment been approved to be safe?
I thought this was a good question. These days CBD oil has been touted as a cure for any and all ailments. Our grocery store sells it in a prominently displayed kiosk.
Hi Honey. Heading to the grocery store. Need anything? Milk? Eggs? CBD?
Here’s excerpts from the in depth answer written by Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD.:
With our current opioid crisis along with the increasing approval of the use of medical cannabis in the United States, this is a timely and appropriate question. Cannabis (also known as marijuana) is the most commonly used illegal drug worldwide (at least illegal in most areas). The compound called delta 9-tetrahydrocannabinol (THC) is responsible for its effects that make people feel “high”. Another compound in cannabis is cannabidiol, known as CBD for short. CBD does not have the “high” exerting effects of THC but is thought to have medicinal effects partly due to its attachment to cannabinoid receptors. These receptors are located on the surfaces of cells throughout the body to include the brain, nerves, and cells of the immune system. Therefore, it is not surprising that CBD may potentially have beneficial health properties. .
. I have had patients with chronic pain use CBD oil and purportedly report good results, especially for nerve pain (which is common in Sjogren’s). However, I am unable to formally recommend it to my patients for several reasons. One big reason is that recently there have been reports of high levels of pesticides and heavy metals (such as arsenic and lead) in many CBD products along with inaccurate amounts of the stated amounts of CBD. This represents on of the biggest problems. Since the federal government makes CBD use illegal, there is no quality regulations imposed on their production and distribution. One of the most important things is that I cannot recommend any treatment unless it has been proven safe plus effective. We just do not have the research to prove either one.
Bottom line: I do believe that it may have potential health benefits. However, until we have more studies to prove effectiveness that outweighs side effects, studies to know its potential interactions with other medications, and that we have regulatory controls to ensure high quality products (devoid of harmful contaminants), I cannot recommend it.
Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD
I have included only a few paragraphs from this article, but be sure to head over to the Sjogren’s Syndrome Foundation to read it in its entirety.
I guess I won’t be adding CBD oil to my grocery shopping list any time soon.
After being denied Orencia by my insurance for 2 years I was really looking for anything that could help. I tried gummies 1st. (Really REALLY don’t waste time with gummmies) I was skeptical. I did notice that my brain fog drifted off and my spine pain cleared. BUT my joints still hurt.
My compound pharmacists store sells CBD so I called to ask their nutritionist if she could explain to me more about it. She and the lead pharmacist were a wealth of information for me.
I started using the “green” formula, which is considered the rawest form. I noticed right away that my brain fog lifted and my spine pain melted away. It did help me with connective tissue the longer I used it.
The exciting thing is that after a month or so I started to develop saliva again! My dentist even asked me what I was using because I had an over abundance of it.
Then when I went to my eye doctor HE asked me what I was using. I had near to no abrasions on my eyes and I clearly had tearing.
My Cornea Specialist- the same thing. My Cornea Specialist has been documenting it closely as some of his other patients that have had the same results.
My Rheumy has had so many patients say they have had good results as well.
She just wishes that there were some numbers on it’s use.
I really do wish that there could be some legitimate testing done because I’d love to know more of how it works.
I do have to say that my severe joint issues weren’t helped as much as I wanted. I’ll take spit, tears and no spine pain off my plate as a much blessing!
I use a product that’s grown in Europe so no pesticide and the product has already been tested by the feds.
It’s a buyer beware kind of thing and as with anything you take, herbal or pharma, you have to pay attention to your body.
P.S. I’m a pretty conservative kinda gal. I really did some homework before starting to use it because of the bad reputation anything hemp has been.
Wow, Amy, I am so glad to hear this! I suspect that a compounding pharmacist would supply a better product than the ones I am seeing in my grocery store?
Thanks for sharing your experience!
Amy Junod: Ditto for me! Sleeping well and therefor no brain fog or body pain.
MD’s will never recommend it, for legal reasons and no studies that any Rheumie MD would ever site. So, as usual, the patient is the one left to go searching and USING OUR OWN BODY to experiment.
However, I’ve noticed that the Sjogren’s Foundation is getting more open to publishing and broaching controversial subjects. Maybe, just maybe, at the next Patients Conference they may have a presentation on CBD. One can only hope!
I’m in Canada where this is all legal now recreationally. I did still get a prescription for cannabis oil and CBD last winter to help with insomnia, Sjogren’s headaches, joint pain . The doc prescribed both as CBD needs THC as a catalyst to work efficiently. I’ve stopped taking it nearly a year later due to not liking my heart rate when taking it. It did help tremendously with my headaches as well as sleep issues. It did nothing for joint pain. The CBC oil does work well as a topical aid for rashes and other things. I personally feel results depend on the person. It’s not the scary monster it’s made out to be though and stigma around it needs to end. Many are finding relief. Just sleeping well helps with other things. I might take a tiny dose of oil now and then just for sleep.