CBD again🤔: There is occasional discussion about... - PMRGCAuk

PMRGCAuk

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CBD again🤔

fmkkm profile image
fmkkm
•54 Replies

There is occasional discussion about CBD oil and if it could modulate our illness. I came across this research article and it looks like it has a definite affect on IL2 not IL6.

A tough read but interesting.

ncbi.nlm.nih.gov/pmc/articl...

Enjoy.

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fmkkm
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PMRpro profile image
PMRproAmbassador

Presumably parallels the fact that anti-TNF drugs don't work in PMR at least and are specifically warned against in the guidelines. Though I think there is some evidence that T-cells are involved in GCA in some patients - which is probably why Actemra doesn't work 100% in all patients.

fmkkm profile image
fmkkm in reply to PMRpro

That’s so interesting. Is it possible that the ones who Actemra does not work for have another form of vasculitis?

PMRpro profile image
PMRproAmbassador in reply to fmkkm

Unlikely, in that the patients in the clinical trials would have had confirmed GCA, most likely by TAB in which case the giant cells would have been seen. However, there is some evidence that there are different pathways producing cytokines, the inflammatory substances that are involved. Not sure how tocilizumab works except it interferes with the pathways producing IL-6. But there is more than one pathway.

bunnymom profile image
bunnymom in reply to PMRpro

Can you phrase this article in layman's terms please?

PMRpro profile image
PMRproAmbassador in reply to bunnymom

"Taken together, these data suggest that CBD suppresses T cell function and that CB1 and/or CB2 play a critical role in the magnitude of the in vitro anti-sRBC IgM AFC response."

"A T cell, or T lymphocyte, is a type of lymphocyte (a subtype of white blood cell) that plays a central role in cell-mediated immunity. T cells can be distinguished from other lymphocytes, such as B cells and natural killer cells, by the presence of a T-cell receptor on the cell surface."

All drugs and hormones etc work by attaching to receptors on various cells. No receptor, no effect basically. The cannaboid receptors CB1 and CB2 don't have a high affinity for CBD but are crucial to how much effect there is.

It is just a study that investigated HOW CBD works: it suppresses the T-cells which are central to the immune response and in some way via particular receptors.

But more than that - would take me a week or so to read and get my head round it! Wrong pay grade ;)

fmkkm profile image
fmkkm in reply to PMRpro

Thanks so much for reviewing. I was always under the impression that GCA involved just macrophages. I just read another study that said both Tcell lymphocytes and macrophages. When these lymph cells go into a hyper immune state it involves IL-2. So maybe there is something to CBD benefiting GCA symptoms?

Baileyw06 profile image
Baileyw06

I have bee using CBD oil for about 3 months.It has really helped me .I take 11 mg before I go to sleep and I sleep through the night without pain.Than ,you wake up rested and don’t have the fatigue during the day.It has also helped me to taper .

I did a lot of research and you have to buy top quality that is 3rd party tested and doesn’t have additives.i use Extra strength hemp extract oil.

Olive oil flavor.

Hope this is a help.

fmkkm profile image
fmkkm in reply to Baileyw06

Hi,

That sounds great. Even if it doesn’t directly affect the disease just getting good sleep is amazing. I would also think it’s affect on stress would help with flares.

Best/fm

in reply to Baileyw06

That's very interesting. Can you advise as to the strength of the capsules and perhaps the company who supplied or made them? Healthspan in Guernsey supply cannabidiol (CBD) at a strength of 6.4mg and I believe other strengths.

Baileyw06 profile image
Baileyw06 in reply to

I use Charlottes Web and it has no THC.I use the oil not the capsules. On the label it reads hemp co2,extract number of milligrams and aerial which is the way it is processed, which is the purest of forms, I use the extra strength.You really need to the research on the brand you buy because it is not regulated.I am in the states.They say you should start at the lower dose and than increase.

in reply to Baileyw06

Thank you, I shall investigate because I have trouble sleeping due to another painful condition related to nerve pain. I was given amitriptyline but I don't like the side effects.

Kenneth77 profile image
Kenneth77 in reply to

Took amitriptyline75mg for a few years for sleep. the sedative action was among the best, but the side effects were annoying to be kind. then Dalmane (flurazepam) worked great, but extremely habit forming in that you can't stop easily. I now use 50mg promethazine + 12.5mg of zolpidem.

in reply to Kenneth77

Thanks for the input and Interesting to say the least, i'm tempted to stick to insomnia, if it wasn't for the pain I would. I must look up promethazine and zolpidem but I would think that they were addictive like most things to help with sleep and pain. However I appear to be one of those people who can't tolerate a lot of medicines, for instance I thought I was dying when I tried gabapentin and statins were horrific.

Happy days.

HeronNS profile image
HeronNS in reply to

Calcium supplement has helped me, others use magnesium. Just a couple of capsules (about 300 mg calcium altogether) near bedtime with a small snack, in my case usually a large spoonful of plain full fat yoghurt. It wasn't able to completely override heavy duty stress connected to my renovations and move, but even so I only had one night when I gave up and got up, and the rest of the time I've had no trouble falling asleep and staying that way, although I do get up very early. Several years on still helps.

in reply to HeronNS

Thanks I'll give it a go!

Baileyw06 profile image
Baileyw06 in reply to

Hope it works for you

in reply to Baileyw06

I don't know how that happened, I replied to you but somehow I replied to myself !

See the reply to myself. I'm probably still asleep 😉

in reply to

I tried it last night. Well it did and it didn't 🤔 I went to bed at about 10.30 pm and fell asleep quite quickly. I woke at 1.30 am thinking it was time to get up. I did manage to get back to sleep fairly quickly and finally woke again and got up at 6.30 am. So their was some improvement. I shall give it a go for a few weeks so monitor the situation.

Baileyw06 profile image
Baileyw06 in reply to

It might take a few days to work, you might try increasing the dose

Suet3942 profile image
Suet3942 in reply to

That is my sleep circle exactly.

in reply to Suet3942

Oh really, but I must admit it's somewhat annoying 🤗

Suet3942 profile image
Suet3942 in reply to

You can say that again!

in reply to Suet3942

Maybe we should form a club. We could call it 'The 1.30am Wide Awake Club' (TWAC) :-)

in reply to

Troupe rather than club? Sorry i am such a child 😂

Sign me up. Been awake at 1.30am evety night but 1 in the past 3 weeks. Blaming everything on sleep deprivation.

in reply to

Well we have to blame it on something, sleep deprivation is my excuse as well 🤗

in reply to

Cbd doesn't come free of effects ...as usual...but its weighing quality of life vs side effects.

cbdoilreview.org/cbd-cannab...

I would Rather have tbe full version with THC ...hope they add the medicinal use to other chronic pain conditions. I certainly found it helped with my fibromyalgia despite the risks.

Baileyw06 profile image
Baileyw06 in reply to

I was lucky,I haven’t had any side effects and it has helped my quality of life.

in reply to Baileyw06

Its great to have the option. 🤞

Because of the way it effects the enzyme in tbe liver that metabolises other drugs that i take beyond pred, i am very nervous. One paper i read mentioned how it can make pred less or more efficient, same for other meds too. I have enough of a hard time balancing them now! If it helped me sleep i would love to have it. If i see a special deal.i will buy and try. That way if it does mess with my meds i wont feel bad throwing it away when i am on a limited budget.

Baileyw06 profile image
Baileyw06 in reply to

Do you have a Lucky’s, that is where I got my Charlotte ‘s Web.They had a return policy that I could return it with the receipt if it didn’t work.

in reply to Baileyw06

I cant find uk version. As you can see its 4am and i have been up for hours so if it worked cbd would be great. There is talk of banning it for 18mths to do clinical tests.

dailymail.co.uk/news/articl...

Baileyw06 profile image
Baileyw06 in reply to

Sorry to hear that

in reply to Baileyw06

I have diabetes and read tbe other day tbat it can help treat that so yku never know it may be on prescription eventually.

diabetes.co.uk/news/2015/Ap...

PMRpro profile image
PMRproAmbassador in reply to

The Newcastle/Glasgow study seems to suggest that their supervised very low calorie diet can reverse Type 2 and insulin resistance.

in reply to Baileyw06

Sorry as you can see i try to do my research before i try things! Whereas as a whippersnapper i tried things to see if i liked them😜😂

in reply to Baileyw06

It is the daily mail though!

GlynisE profile image
GlynisE in reply to

I bought mine from Holland & Barrett don’t take every day just when I feel stressed and need to sleep. Five drops under the tongue, hold for 60 seconds.

Suet3942 profile image
Suet3942 in reply to GlynisE

Tastes disgusting doesn’t it?

GlynisE profile image
GlynisE in reply to Suet3942

Not good.

Daylily2000 profile image
Daylily2000 in reply to Baileyw06

Is this what you have?

charlottesweb.com/extra-str...

Baileyw06 profile image
Baileyw06 in reply to Daylily2000

No you either need the 11 mg extra strength and use 2 droppers or the 23mg extra strength and use 1 dropper

I buy what ever is on sale of those 2 and I like the olive oil the best

The brand is right

in reply to

Thank you for that, I found it very informative and useful. Under the circumstances I won't try it.

powerwalk profile image
powerwalk in reply to

Did you have the medicinal version? That helped with the fibro?

LWNE profile image
LWNE in reply to powerwalk

Hello, ive been taking curcumin and Vit D for about 3 months, and I think it is helping - im on 10mg of Pred for my PMR, and just a little bit of morni ng stiffness which soon goes. Im going to stay on 10mg until back from my trail walk in early May, then attempt the slow taper to 9mg. Thanks to everyone for all the valuable info!

in reply to powerwalk

Lets say its was a few years ago and i smoked. 😜

powerwalk profile image
powerwalk in reply to

Aahhh right. !

Sped53 profile image
Sped53 in reply to Baileyw06

Does it interact in any way with prednisone and Plaquenil? I’m on both but would sure like to get off them! Is your doctor on board with using the CBD?

There was a programme on the other day about cbd and about diets to reverse diabetes. I taped it but havent had time to watch it yet.

Health: Truth or Scare, Series 3: Episode 1: bbc.co.uk/iplayer/episode/m... via @bbciplayer

salparadise127 profile image
salparadise127

Increased THC makes it more effective, if you can deal with the Euphoria, it's called the Entourage Effect. The anti inflammatory and pain easing properties of CBD and THC together are synergistically better. Here in Florida, they just legalized marijuana dispensaries to sell " Flower" or buds of the plant for smoking or vaping. For me and 3 years of PMR stuck now at 7.5 mgs/day, it helps as does the giddy side effect of getting stoned and dealing philosphically with our condition and lot in life. It brings peace to PTSD sfferers. I'm 65 and smoked the stuff in College in the 70's recreationally. One survey said today's Millenials prefer it over alcohol. This herbal plant from God's Green Earth is natural and safe, no one ever died from overdose excess. Whatever gets you through the night said John Lennon, a Pot, Weed, Cannabis Advocate.

in reply to salparadise127

Still "illegal" in the uk although i doubt one would end up in court for personal use. Still funds and is funded by organised crime most often. At least you can follow the provenance when its legalised. The only people you see smoking and vaping outdoors around are young kids....who are driving. I could stand in the street and get stoned sniffing the cars as they go past. The problem is that some of skunk and other high thc plants do seem to be causing psychological issues and psychosis as it is much more powerful since the 90s.

nhs.uk/news/mental-health/s...

I often thought the benefits i got for fibromyalgia were more of the not worrying about the pain anymore. I.e dealing philosphically with the illness.

Baileyw06 profile image
Baileyw06 in reply to salparadise127

I am not ready to try THC yet, as long as this is working

PMRPanda profile image
PMRPanda

I’ve been taking CBD and turmeric for a few weeks. Couldn’t tolerate pred and needed something while waiting to see a rheumi.

Impact so far is:

Greatly reduced fatigue

Reduced pain - not taking painkillers most days

Better sleep

Rosacea and psoriasis also improving.

Sadly no real difference with range of movement in hips

JudithWarrior profile image
JudithWarrior

Beyond me - any conclusions in everyday English that you can take out of the article and pass on?

PMRpro profile image
PMRproAmbassador in reply to JudithWarrior

I did, at the top of the thread.

JudithWarrior profile image
JudithWarrior

sorry just realised that after I sent it x

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