LUPUS UK
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Cannabis oil (cbd) for lupus

Hi. I have had lupus for many years and due to a prolonged period of stress I have had a flare now for many months with all the achy, fatigue and other miserable symptoms. I am very reluctant to go on to more toxic drugs with their potential (and likely in my experience) side effects and am seriously considering trying cbd oil to see if it provides any relief. I am very law abiding but desperate now to have some relief and quality of life. Ii don't want to smoke it or get high just want some normality as I am sure other sufferers will appreciate. Does anyone know if it helps, and have any advice? Many thanks.

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Hi,

I have both M.E & Lupus

Im pretty much in a constant cycle between the 2, as 1 triggers the other by the immune system being under or over active

I have used cannabis for years

It provides more relief as a painkiller & muscle relaxant than i wud of thort

As have stopped & started smoking many times, plus its natural plant extracts instead of manmade chemicals

I no ppl who dont smoke but use it in food instead to help

U mention law abidding, but instead ask urself why only in less than the last 100yrs in this country, some guy in a suit behind a desk, has decided we are no longer allowed a natural, herbal, form of treatment that humans have used for tens of thousands of years! & still do use medically in many other countries

1 tip for the natural plant

Solid isnt as strong & can b put in more foods like yogurts & butter etc

At the end of the day, its a natural, herbal plant extract treatemt that humans have used for tens of thousands of years

Hope u find sum relief soon, whatever u decide

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Hi Blueeyes57,

I have been buying CBD oil capsules for over a year now for my brother who has MS. I started buying it for him after a conversation with a nurse when he was in hospital. This nurse had worked in Calafornia & seen great results. I have UCTD & suffer from awful fatigue amongst other things & tried it at first. I honestly can't say it made it any difference to me except made my headaches worse. But I didn't try it for long. CBD brothers who I buy the oil form, grow their cannabis in the Netherlands from a strain of without the other chemical ingredient THC (this is high in Scunk) which causes the highs etc. so in a way is a grey area as to whether illegal. There is a legal prescribed cannabis drug licensed for MS sufferers who have severe spasm. This does contains both chemicals (but low THC) as it's recognised cannabis works better with small amounts of THC in it as well. It's very expensive. Unfortunately the NHS will only pay for it in Wales & Scotland & you have to get it on private prescription here. I don't really have any evidence CBD oil helps my brother either as he is declining but hard to know if he could be worse without it. It's a nightmare getting him to remember to take it as he's in a care home & I feel it's not right to ask the staff to give it to him. I feel there is no harm in it though. Neither of us have ever felt in any way high unfortunately! If you go to certain states in the US they can give you the right quantities of course but we are stuck with a limited drug on a trial & error basis.

Hope this helps & it helps your fatigue

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CBD oil was legal in the uk until December last year. It has now been classed as a medicinal product and the manufacturers need a medical licence to sell it. Making it more expensive. It's still legal if they have a licence. It's a grey area whether importing from Europe is legal.

There is a drug available on prescription in some countries called epidiolex. It is cbd based as opposed to sativex which also has thc. It has recently been prescribed for the first time in the uk for epilepsy. But that was a special case.

Personally I have tried cbd oil for my symptoms of joint pain and fatigue but for me it made my fatigue worse and didn't change the pain. I have heard positive things from others.

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Hi that's very interesting. Thanks for getting in touch. I will do further research into it.

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Hi all. 3 years ago I used to be a smoker but stopped when I found out I was pregnant. A year after my son was born I found out I had ITP and SLE and have since been on medication for this prior to this I never even took paid killers for headaches. After a year of being on pills and chemo I went to Amsterdam for a hen party and was easily convinced to try smoking as we'd walked the city all day and I was aching. Since I have found that having a smoke on an evening helped to completely relax, I've not tried the oil but I have a friend who had cancer and after they cough it she used the oil daily and she said she feels it works wonders. Now I watched an interview where a lady had a young boy who was dying I think know it was blood cancer and as the Dr's would not prescribe him cannabis she took it upon herself to give him oil, she had nothing to loose and within days hus white blood count steed to rise, no one undersold why. She stopped giving him it after 2 weeks and his counts steed to fall again. After she told the Dr's what she was doing thy gave him the drug and he eventually overcame the illness. I'm not saying it was comely the oil but before I was ill I probably had my illness but it never came to light. I have come to my own conclusion that it works for me. But getting it is a risky business but we'll worth the risk. I plan to speak to my specialist about this to see her reaction.

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I purchased it legally here in California for my PMR disabling pain and only used it once. It made me throw up and have a horrible night. I want you to know it is a serious drug and to not be swayed by all the good examples.

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Marijauan is not a serious drug. No one has overdosed on marijauan. Ever. I believe what you experienced was a bad high. You had too much! I have never had that happen but I have friend who smoke recreationally who have had that happen. This can be the same as when people drink too much alcohol, they throw up. The only difference with alcohol is that it is expelled from the body.

I think you'd much prefer CBD oil. Try it orally or in a vape. It is marijauan extract without the Thc. The thc is what gives you the high feeling. Orally takes up to 2 hours to take effect and smoking is within 10min.

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Hi Boxxietrolls,

Marijuana is a controlled substance. Research has shown that it can be bad for your mental health, lungs (if smoked), fertility and recent studies have shown that it can be addictive.

nhs.uk/Livewell/drugs/Pages...

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Marijauan has has been used for thousands of years and has only been a controlled substance for the last 50 years because of racism (at least here in the US). Marijuana, if smoked, does cause harm to the lungs but that is only in the bud form as of right now. The oil has no effects on the lungs as of right now. Marijauan can be addictive if it is used frequently. Frequently means the person uses it every day and even several times a day. Thosr who use it infrequently, such as myself, are fine.

Research has also shown that cannabis is good for the mental health. There are specific strains of cannabis designed to help those with anxiety, depression, and most recently bipolar disorder. I am not a doctor but I have done research on cannabis because I am tired of the pain. I am tired of doctors not helping me. If I had to choose between pain killers and cannabis, I would rather have cannabis.

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Thanks for the warning. It is a minefield with the legal AND not so legal (in UK) drugs and I am off the mind unless I have something life threatening to be very cautious of anything, as all seem very toxic. All the best to you.

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Hi Blueeyes57,

This is a possible treatment option that is being researched for lupus, but I am not aware of any published clinical findings yet that suggest it is safe and effective.

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Thanks Paul.

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I use both CBD oil and cannabis. I put the oil in a vape and smoke it because it works faster I'm the system. Orally ingesting the oil takes up to a few hours. Putting it in the vape makes it go into your system right away and makes the pain go away. Thank goodness. Plus, CBD oil is legal because it does not contain thc. Thc is what gives marijuana the high effect.

Secondly, I recently started smoking marijuana. I use it medically only. I use it at night and it makes the pain not go away but turns it into something else. When I go down the starts, it almost feels like a ticckel and I want to laugh. It doesn't hurt. Another plus side is that I am able to sleep! The nights ate the worst and now I can sleep. I never thought I'd be able to sleep with so much pain. It's amazing!!!!

My doctors refuse to give me pain medication and i am glad. Marijauan has helped me 100%. It has turned me back into the person I used to be before the Lupus but I am more normal than I used to be. CBD oil and marijuana are amazing.

I failed to mention I live in the United States!

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Hi Blueyes - only just seen your question when answering a recent one on cannabis use. I was advised by an 86 year old relative who has fibromyalgia to try CBD oil which was legalised in this country last December. She was almost pain free after years of treatment was failing to help. I have tried it and it works well to improve things for me. There is no chance of a reaction with medications or getting high. They take only the flower head. It is sold in Holland & Barrett. You can research it as I did. Good luck

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Thanks all I will see what's available in uk as cbd oil worth a try don't want to go on Azathioprine as so toxic I reckon cbd can't be as bad but so wish it was regulated here in uk for medical use. Oh well seeing as stuck in uk will have to do more research.

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Hi Blueeyes57,

Please discuss this with your consultant. CBD oil has not yet been clinically proven to be safe and effective for use in people with lupus and whilst some people may report that it can help with symptoms of pain and inflammation, unlike azathioprine it is not an immunosuppressant and so will not treat the underlying lupus. If you are concerned about the potential side-effects of azathioprine, please discuss this with your consultant so that they can reassure you about any potential risks or consider other possible treatment options.

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