CBD medicinal use: I thought since there has been a... - PMRGCAuk

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CBD medicinal use

PMRpro profile image
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31 Replies

I thought since there has been a lot of discussion about this recently that this link was worth posting about:

theguardian.com/lifeandstyl...

I think it is a fair representation of the current situation - no-one knows what the medical effect is going to be until they have done proper controlled trials and established effective doses - and that is probably about to start.

The doses used that are known to work in a medical problem are IRO 500-1000mg to achieve an effect. Commercial products speak about 2mg per bottle or "A daily dose of two hemp capsules made by Nature’s Plus offers 15mg of mixed “plant cannabinoids” without a specific CBD count." There is something of a difference!

I'm not saying it doesn't work - far from it, I would love to see trials of it as a steroid sparer. What I'm saying is that if you haven't got a fair bit of money to play with - don't worry, I don't think you are missing a lot yet.

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31 Replies
Rugger profile image
Rugger

Thank you for keeping us up to date, as ever.

Doralouise77 profile image
Doralouise77

I’ve been on medical marijuana, CBD oil twice a day and a mixture of 1:1 with THC at bedtime, for 6 months and really can’t say I’ve noticed anything for or against....

Cheers

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have been trying supplements for last couple of months for osteoarthritis- can’t say I’ve noticed much of a difference. Won’t bother to buy any more, but if there’s a considerable difference when I stop, I’ll report back .

Don’t hold your breathe, but when you’re in pain, it’s worth a try I guess!

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

That is how the snake oil salesmen make their money...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

...if course they do!

Just found out today my right hip is completely cream-crackered along with femoral head remodelling itself - so referral to MSC who after looking at X-ray will refer to surgeon! No wonder in so much pain!

Such fun!

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

That's nice. Not! Is this a sudden deterioration? Had you had anything done to that hip? That is the not-yet-done one I hope?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

It seems to be fairly sudden deterioration - certainly on the pain front!

It was the one which had been diagnosed as bursitis in September last year, and treated accordingly - although no X-ray until recently when I had a good moan at GP following physio treatment making it worse!

It’s the opposite leg to my knee replacement, so everyone blamed that as the cause. Although when I saw knee surgeon last year he queried if any other joints were causing problems, and I did say this hip was “a bit stiff” and said bursistis had been diagnosed. His comment was ‘more likely arthritis!”

Should have listened to the expert!

It has certainly got worse since knee op, which I guess may have exacerbated the situation, but it may have deteriorated anyway - who knows!

Good-ish news - other hip has very little sign of OA (as yet, that is)

Telian profile image
Telian in reply toDorsetLady

Poor you, where will it all end! Aquarobics made my hip, that had calmed down. far worse and felt as if I'd twisted my knee at the same time - now it hurts to climb stairs, no other time and the other ones started today.... I've had 10 surgeries for OA in my upper half between 2003 - 2013 the year before I went on pred. Does OA tend to concentrate up or down or can it be anywhere?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTelian

I think any joint can be affected, but it seems to affect different people in different areas.

Telian profile image
Telian in reply toDorsetLady

Only answer really which I think I knew - just hope it doesn't spread and at the same pace.

Rimmy profile image
Rimmy in reply toDorsetLady

What 'bad luck' DL - it doesn't seem 'fair' as you were doing so well after the knee replacement. Hope you get some effective pain relief soon - which let's face it is always the first thing to get under control !

Rimmy

XX

Bonnie-ma profile image
Bonnie-ma in reply toDorsetLady

Hello Dorset lady,

I am sorry to hear about your need for more surgery. Just to say that hip surgery is so successful these days that I am sure all will be well. It seems to give excellent results whereas knee replacements are always tricky and results vary. You will love your new hip I am sure. I have had two ‘half’ knee replacements a decade ago as considered a bit young for total replacements so know the hard work involved with recovery. I am a bit surprised your physiotherapist didn’t pick up on the presence of arthritis - they are usually very good at diagnosing joint problems. Anyway, keep us updated on your progress.

Bonnie (ex- orthopaedic ward sister - bad knees a legacy of my job)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBonnie-ma

Thanks for that. My knee is brilliant so I’m hoping for same result on hip - as and when!

Actually in fairness orthopaedic surgeon did suggest arthritis last year when I saw him about knee, and I also assumed it was - have it in shoulders as well (family trait) but based on other joints wasn’t expecting it to deteriorate at such a rate.

piglette profile image
piglette in reply toDorsetLady

What rotten luck just after you got your knee sorted out too. You can be the bionic women soon. We can rebuild her!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

I bloomin’ hope so!

piglette profile image
piglette in reply toDorsetLady

Pity it can’t be the six million dollar man!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

Ahh...Steve Austin! Lee Majors & Farah Fawcett the dream team back in the day!

Marymon profile image
Marymon in reply toDorsetLady

Oh, sounds as painful as I sure it is.

No wonder the CBD didn’t do much good.

Good luck with your coming appointment, you are having a bad time with your bones.

Hope you are taking your own advice and staying off the joints.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMarymon

Which joints would they be?! 😅🤣😂

Marymon profile image
Marymon in reply toDorsetLady

Oh spliff on you😉😊☺️

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

DL - did you get a notification in your email of the Marymon post starting "Oh, sounds as painful as I sure it is..."? I got one saying it was a reply to me - which it blatantly isn't. I'm getting sick of forum shenanigans (not just this one to be fair)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Yes I did get notification of that and her follow on one. Both clearly a reply to me.

Must admit I’ve had “rogue” notifications as well in the past - sometimes meant for you. The system must think we’re joined at the hip - oops, that’s not a good idea at the moment!

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Just had another - so have reported both. No - currently I think you have enough hip trouble without me joining in...

polymy profile image
polymy in reply toDorsetLady

Hi D.L.,

Hope you will find MSC useful. I have had dealings with them here in the Midlands. Both shoulders, in the words of the rheumatologist, are wrecked. She then went on to say,”I see you have a ropey heart as well.” Off to MSC. Have had physio which was useless as the pain is too great. Had cortisone injections in both with little relief so am now referred to the pain clinic who are arranging injections into the muscle facia. If there is no success I will have subscapular injections to do something to the nerves. Each time I have had to wait many weeks for each consultation. It seems they are keeping me away from orthopaedics. Meanwhile coping with pmr as well. OA is painful so you have my sympathy.

Liz.

MhairiP profile image
MhairiP

I took a CBD supplement for a couple of weeks, but when I had a consultation with a nutritional therapist, she said that because pred was controlling the pain and stiffness, I may as well stop the CBD for the time being, then start it again when I'm almost off pred. So that's what I did.

SheffieldJane profile image
SheffieldJane

Thanks for this. I have recently seen your face attached to your excellent article in the PMRGCAUK publication. I would just like to say what a very nice face it is.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Thank you - though I am a bit older now...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

But just as lovely 😉.

Rimmy profile image
Rimmy

I have not tried CBD oil and I'm not recommending anything 'illegal' but it seems fairly obvious that once the psychotropic qualities of cannabis are removed surely some of the 'benefit' is likely to be lost as well. What is going on in our 'heads' - and our subjective 'perceptions' of pain are very relevant of course and anyone who just filled in the survey (PMRpro also posted here) about taking long term meds will see that how we are feeling at any point in time is going to a major variable / interaction with any form of chemical assistance we are having. This is not to say of course that 'pain is in our 'heads' but that pain relief is clearly quite a complex thing for most of us.

SheffieldJane profile image
SheffieldJane in reply toRimmy

This is so true! Everything has its drawbacks though. My early 70’s flirtation with the drug seemed to produce uncontrollable giggles in me, whilst everybody else was “ getting into the sounds man”. Never was very cool. My mother said I was the cleanest hippy she’d ever seen. ✌️

S4ndy profile image
S4ndy

Like you say, research needed. However I do wonder if the drug companies will be interested as with something as readily available, how will they make their huge profits. Sativax the one product currently on the market costs £400 per month if prescribed privately! Only available on NHS prescription in Wales and only for MS. MS sufferers don't actually like it as it contains too much THC for some people and affects their activities if daily living including driving.

Like all things its trial and error and what suits an individual.

Guess we wait and see but it helps me so I will carry on even if its the placebo affect :D

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