Has anybody any experience with Cannabidiol oil?

[Octavia17]

I saw a report in the Daily Telegraph about Cannabidiol oil and joint pain in rheumoid arthritis. Has anybody tried this for the joint pain in ibutinib use?

[Newdawn Administrator]

Hi Octavia,

CBD is said to play a part in immune system modulation and that’s where I think it gets very complex when combined with CLL. Presumably the articles you’ve explored are in relation to the efficacy of Cannabidiol oil on people with RA without additional issues of blood cancer? Throw in possible pharmacological interactions from Ibrutinib and the effects are hard to estimate. I suspect even CLL specialists may struggle with accurately calculating biological interactions. Reading this piece of research highlights the complexities involved in extrapolating the biologic activity of cannabinoids on CLL cells generally let alone those subject to BTK inhibitors. You may wish to work through this but it isn’t an easy going read.

journals.plos.org/plosone/a...

I don’t take Ibrutinib but have significant systemic, arthritic pain so fully understand the search to find some agent that could ease it. I’m not personally tempted to use CBD but I know some people do to good effect. It continues to be extremely difficult to access in the U.K. anyway and my understanding (which may be wrong) is that doctors are only prescribing Sativex to patients with MS presently. It may be much easier in other countries however.

sativex.co.uk/healthcare-pr...

The only advice I can offer is to speak to your Consultant but you may find it’s still in the realms of unchartered territory.

Best wishes,

Newdawn

[Octavia17 in reply to Newdawn]

Thank you Newdawn for your detailed reply. It I is clearly a complex area. We will discuss with our specialist before starting it.

[Winingearm in reply to Newdawn]

Hi Octavia, I think I now a lady who can help her name is edited out by Admin I believe she is advertising something like this. Go to facebook & look her up. Thanks Josee.

[Newdawn Administrator in reply to Winingearm]

Hi Winingearm and I appreciate you are trying to assist Octavia but I’m afraid it isn’t permitted to direct a fellow member to an unauthorised supplier of medical products who advertises on Facebook. It isn’t safe particularly as Octavia is on Ibrutinib and intends to consult her specialist for advice. I’m afraid I’ve had to edit the recommended name out of your post.

Regards,

Newdawn

[Winingearm in reply to Newdawn]

Sorry did not know all this. The people only say it really helps them If they take this with arthritis & other things just wanted him to talk to her & get more info.

[Octavia17 in reply to Winingearm]

Hello winingearm

Thanks for your reply

Cannabidiol is easily and legally available for all as it has THC removed, the hallucinogenic ingredient of cannabis.

Not to be confused with THC containing extracts.....which are illegal in the UK or subject to prescription .

[HAIRBEAR_UK Founder Admin]

Clear strategies to help cope with treatment side effects of the newer agents are clearly needed. The wealth of experience here in the community is probably the most valuable to gain insights from. Not on a BTK myself i cannot comment other than that; I attended the UK CLL Forum on Friday. Where one of the significant challenges the clinician expert community where exploring was what to do about preparing guidelines that tackle and inform of all the interaction issues that may accompany BTK treatment. Managing side effects was not however discussed!!

If you are treating your CLL with a BTK please think carefully before just using something in desperation, please always discuss any medications or substrates you intend to take.

Do you have access to a clinical nurse specialist? they may have strategies for you?

Nick

[richutchens]

I have a marijuana prescription card issued by our state. I bought some of the oil, took one dose and it make me kind of dizzy and real tired. Won't use it again. My brother in law who has liver/colon cancer is using protocel and the oil and doing well. Ibrutinib is working for me so no experiments for me right now.