CBD any thoughts?

[peggy1920]

does anyone have experience of using cannabis oil to alleviate the symptoms of PMR? Anecdotal evidence over the years has suggested that cannabis use, not legal in the UK of course, has helped people manage the pain of arthritis. Now with more of an emergence of medical use of oil it seems that there is more evidence of its benefits emerging. I suspect, although the use of steroids has dramatic impact, the side effects are pretty harsh. Opinions, thoughts, links to more information welcome.

[DorsetLady PMRGCAuk volunteer]

Plenty of related posts -general opinion seems to be it doesn’t help with PMR per se but may help with sleep and other add ons. But you need to aware of interactions with medication.

healthunlocked.com/pmrgcauk...

[peggy1920 in reply to DorsetLady]

thank you, good point. Help with sleep might be good as I am weirdly, I know, finding it better to take prednisolone at night. Poor nights sleep gives me active mornings. I like my mornings.

[123-go]

Hello. There are a number of posts on the subject of CBD oil in ‘Related Posts’ at the side of your screen if you are using an IPad. On iPhone under the PMRGCAUK heading tap the MORE box then tap SEARCH from the drop down box. Type ‘CBD oil’ for access to previous posts.

Hope this helps.

[peggy1920 in reply to 123-go]

thank you! Signposts to navigating where to go really helpful when there is so much information to digest 😊

[PMRpro Ambassador]

There are links to several posts on the same topic in the Related Posts - and each post will have more links in its Related Posts.

Of course they don't appear until you have posted your own query but once you have asked your question - ALWAYS worth looking to see what they bring up.

[peggy1920 in reply to PMRpro]

thank you! Very helpful signposts / tips, and reassuring too. I shall consider all options carefully. We like having options 😊

[PMRpro Ambassador in reply to peggy1920]

But basically - having read every single post that is linked, I don't think anyone has found CBD oil helped with PMR directly - though some say it helped with add-ons such as sleep or anxiety. Most found it an expensive experiment - the benefits were for the company selling it, not them!

[peggy1920 in reply to PMRpro]

also very helpful! I am using the dead slow almost stop tapering plan from 15 to 12.5 mg to get me past my first flight and trip abroad since pre pandemic. As I mentioned, sleep is a slight issue as I take prednisolone at night so I get quality mornings. Don’t want to rock the boat while I’m away but will review everything with dictor when I get back. So grateful for your diligence and prompt responses. Thank you so much!

[PMRpro Ambassador in reply to peggy1920]

Another way of getting quality mornings is to split the dose, taking the bulk of the dose in the morning as usual but maybe 1/3 later enough in the day to extend the antiinflammatory effect to the full 24 hours. That usually means enough of the dose is out of the body before bed for your sleep to be better.

[Rachmaninov2 in reply to PMRpro]

I take 7mg a day, 6 mg at breakfast time and 1 mg at about 6 pm. It works better for me doing it like this.

[peggy1920 in reply to Rachmaninov2]

thank you. I clearly have some fine tuning to do. So lucky that this resource exists!

[peggy1920]

not a pro for nothing. I’ll give it a go, thank you!

[singingloud]

I’ve had several family members who want me to try CBD so I did some research and found this helpful. wayofleaf.com/cbd/101/does-...

Hope it helps.

[DorsetLady PMRGCAuk volunteer in reply to singingloud]

see reply linked - healthunlocked.com/pmrgcauk...

Have read your link before, but they are selling CBD products …

[Missus835]

I was taking CBD oil prior to being diagnosed with PMR. I stopped once on Prednisone because I was acting rather stupified. I believe the dose of CBD oil was probably too high in conjunction with the Pred. I've now resumed the CBD oil at a much lower dose and find it does not help with pain, but does help with the mood swings and energy dips. Hope this is helpful. Different for everyone and worth a try.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

True, but you still need to check with doctor….as you say, it may be okay for your and your medication, but not for everyone.

[Blearyeyed]

There is no specific evidence that suggests the use of CBD can reduce the symptoms of insomnia caused by taking medications which change Cortisol levels, like Prednisone.Although studies are looking into whether the positive effect of medically tested CBD medications on sleep and Anxiety are significant or caused by the Placebo effect there is no consensus on the amount required or product to use.

Although the reported side effects of CBD on generally healthy people are small and it's use is considered mainly harmless taking CBD involves more consideration and research if you need to take other medications. What is important to people with chronic illnesses and taking other medications is if CBD could effect how well your prescribed drug works , or if there is an interaction with it.

In terms of Prednisone the side effects could cause a reduction in the dose you absorb , or cause the processing of the Pred to be slower each day as CBD oil has been shown to reduce how well the liver processes medications in research tests. This could cause a build up in the system.

Depending on the strength , type of cannabinoid , and other ingredients in the product it can also cause diarrhea or faster bowel emptying which in itself can mean you absorb less medication in the digestive system.

For this reason alone , experimenting with its use may not be worth the risk of causing a flare in your chronic illness , or if you do , you would want to do so at a time when you aren't going to be busy doing other important things , or at a time of Stress.

And then there is the lack of regulation. Most UK products have little active ingredient, and finding one that is reliably approved and recommended by patients and clinician's is hard.

US studies also showed that one quarter of products contained far less active ingredients than stated on the label , and 43% contained too much of the cannabinoid which could cause drowsiness in the day , and the cannabinoids were not always of the type that would have medically significant effect.

This makes it hard to choose an appropriate dose , even if anyone could really agree on what the dose should be.

The CBD used in medical testing which show positive effects for things like epilepsy, mental health issues , Parkinson's and the varieties that help nausea and insomnia in chemotherapy patients are not available over the counter or by prescription for the majority of us.

Taking Pros advice on altering when you take your Pred dose is likely to have a far more successful effect than any oil you find out there.

[peggy1920 in reply to Blearyeyed]

so kind of you all to take the time to respond in such detail. It’s so reassuring to be presented with a range of views like this. Food fir thought, thank you again

[MiniSpec]

I tried some CBD oil a couple of times, in the hope that it would help reduce the pain levels and allow me to live without resorting to painkillers all the time (as well as my Pred). It didn't help that at all, but just knocked me out rather effectively.

So if I ever get insomnia I might try a little of it to help me get to sleep, but otherwise I don't bother with it.