Hope! Cannabis Oil: Hi all! I wanted to... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hope! Cannabis Oil

SarahJane926 profile image
25 Replies

Hi all!

I wanted to share that I have been using cannabis oil and cannabis skin based products for almost 2 months now with some wonderful feedback. I have Scleroderma.

I haven't taken painkillers since I started the oil - I was originally on Naproxen, which some of you know, comes with unpleasant side effects.

My blood work came back for the months of September & October much better, especially my inflammatory markers which were at their all time best!

My hands and feet are particularly bad with my condition, since taking the oil combined with using the cannibis cream and balms, I can finally walk comfortably without the feeling of "walking on pebbles" and the inflammation in my hands are almost non existent with improved grip and flexibility!

And interestingly enough, I was born with Eczema which affected my hands, feet and creases. My eczema completely cleared up a year before my scleroderma diagnosis... but since taking the oil, my eczema has started coming back in some places. It may sound odd, but I've never been happier to see my eczema return... I feel it's a sign my immune system is taking some of its focus off attacking the scleroderma side of things and almost as if im turning back the clock to where my immune system began - hoping that makes sense!

Currently, I am still taking the Mycophenalate. The oil is very minimum in CBD and THC levels, so out of 100% I'm on about 0.3% of both, im hoping to see better results as I gradually increase, with the hope being to put the scleroderma into remission.

Has anyone else tried cannabis oil or researched/thought about using it?

I'm beginning a blog very soon about my progress so will certainly keep you all updated!

I'm feeling the best I've felt all year! Even if it doesn't kick scleroderma's butt, it can certainly improve the quality of life

Best wishes to you all x

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SarahJane926
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25 Replies
Mylreaclairelee profile image
Mylreaclairelee

Following

hunkyd0ry profile image
hunkyd0ry

Thats very interesting to read! Could you ]lease go a little more into detail on hw you are using the oil?

Are you taking it orally or use it externally directly on the hands?

Where do you get it and how much do you pay fr it?

Thanks

SarahJane926 profile image
SarahJane926 in reply to hunkyd0ry

Hi hunkyd0ry

I'm taking the oil orally, sublingual (under the tongue) and also vaping it for quick pain relief when needed. I also have it already made in a cream and a balm which I apply topically to my hands and feet and other areas of joint pain.

As I'm on a low dose, it is costing me £45 for the oil which lasts me just over a month. The topical creams are currently free samples so it paying for those

I am lucky enough to have a friend who sources it

8whitetoes profile image
8whitetoes

Were you taking anything else before you started taking the CBD oil????

Any scripts that require Dr's orders???

I have tried them both , as vaping and the one by mouth .....

(Yes it was the best one's you can buy..., $$$ very expensive.., not covered by insurance at ALL .., not in the US ..,

anyhow )

But it was the THC Free kind too .... Which there's ALOT of controversy about the **Actual Cannabis** plant and the **Hemp** plant ....

The Hemp plant ,is of the cannabis family, but not quite the same thing at ALL..... ( Their Really are some huge differences ) ....

I gave CBD oil a good long try ...,

Okayed it with my Rematoligist , she recommended it TOO .... (Like everything what works for one may not work for another ) .....

I'm taking 6 different meds.... I was taking 10 .... Some I stopped because of side effects (I had a SERTOIN reaction get started ..., Because SERTOIN is made in our GI , and many of the medications we take work on the SERTOIN ...., It was not a pleasant experience .., keeping it short .....,

I felt like I was walking on a narrow ledge ..., and (step of to the Right .., buy the Farm ..., Step Off to the left .., comma ....., Trying too keep myself looking forward ..., to reach a safe place)....

An I have died a couple times ..., During Surgeries ... ***Year's Earlier!!!*** I have seen what waits for each one of us ... No One will ever convince me We are here for a moment , w/ nothing else ... There is a GREAT CREATOR waiting for us .., don't be a once in awhile caller ....

💗💗💗💗

SarahJane926 profile image
SarahJane926 in reply to 8whitetoes

I was taking Mycophenalate and Naproxen before oil - I am still taking the Mycophenalate.

I have just the CBD too, I put several drops in my tea before bed and have the best night's sleep 😊

I was very concerned about taking the THC part of the plant (that being the part that induces the high) but for autoimmune diseases, the THC part is important to take alongside CBD.

I only felt high for the first 3 days I started my oil but I haven't got it again and still take it- tolerance levels were good!

Thanks for sharing your story! I believe that we will meet our maker, this isn't just all there is!

8whitetoes profile image
8whitetoes in reply to SarahJane926

This is Exactly what I have tried too Explain TOO ..., My family CBD alone , will not be the helping hand .... If it doesn't have the THC too it Will be yet another **expensive experiment** .... Thank you so much for your confirmation .... May the Great CREATOR send you many more blessings 💗💗💗💗

naila_007 profile image
naila_007

Hi Sarah,

Good to hear. I am on Mycophenalate and has helped a great deal. Have also been advised to take CBD oil, but trying to find in purest form is a bit of a challenge and expensive. A syringe can range from £120 to £300.

thanks,

Naila

SarahJane926 profile image
SarahJane926 in reply to naila_007

Hi naila

The Mycophenalate helped me a great deal too! The CBD oil is great for the pain and inflammation but in our cases of autoimmune diseases, we need the THC too. The THC regulates the immune system and is the compound which will hopefully put the disease into remission. CBD and THC work better together, like a jigsaw. The higher the dose the more expensive it is I'm afraid 😥

Bec9680 profile image
Bec9680

Hi Sara!

So glad you are getting some relief! I’m not surprised the CBD oil has you feeling better. It’s high in antioxidants and this is key for healing the body. I also wanted to let you know some doctors are finding out that there’s bacteria in the body causing the scleroderma. The immunosuppressants help by calming the immune system but they are not getting rid of the cause if you know what I mean. I have systemic scleroderma for 3 years finally found the right doctor got tested for mycoplasma bacteria it was positive! I am being treated with antibiotics been 3 months & symptoms are reversing. It breaks my heart that other doctors are not doing these tests for patients. Please go get info at the roadback.org

Also antioxidants contain polyphenols which decrease inflammation and kill bacteria!!

I’m taking CBD to calm my immune response along with other herbs and cistus tea which is 4x higher in antioxidants than green tea.

White toes thank you so much for sharing your story about the afterlife.. this is amazing & I can’t wait to meet out Great creator! I prayed for answers about the awful disease that most doctors don’t seem to have answers & God showed me answers & sent me to the right doctor. God bless!

SarahJane926 profile image
SarahJane926 in reply to Bec9680

Hi Bec,

I checked out road back.org and it's very interesting, are you based in the UK?

I've read a lot on gut bacteria and the link with immune systems, I am going to take a microbiome test to see what my body is lacking/what's irritating it -

(here's a link for those that are interested in taking the test) atlasbiomed.com/uk

Which doctor do you see and what are the prices?

Best wishes x

Bec9680 profile image
Bec9680 in reply to SarahJane926

Hi Sarah,

I'm in the united states, I hope the word gets out in the UK about doing these mycoplasma bacteria tests. When the body starts acting crazy its usually because there is a foreign bacteria, virus, toxin. I hope the doctors start doing more tests to find better answers for all of us. I see a doctor off the roadback website. Insurance didn't cover it but when it came to saving my life I was willing to pay whatever!

Thanks for the link on getting those microbiome test done. The author of the medical medium book talks about juicing celery juice first thing in the morning on empty stomach to get gut back right, my friend said this got rid of her raynauds. Take care

Navaha profile image
Navaha

Hey, does there seem to be a change in skin condition? Because I figured this could do well

SarahJane926 profile image
SarahJane926 in reply to Navaha

Yes definitely, I have wrinkles and creases back on my hands and it is certainly less thick, I can grab the skin when I try and make a fist

gindy profile image
gindy

Hi there, I've done the same and it's working. I'm not in anywhere near as much pain anymore.

SarahJane926 profile image
SarahJane926 in reply to gindy

Thanks for sharing Gindy, how long have you been taking it for?

gindy profile image
gindy in reply to SarahJane926

Hi Sarah,

I've been taking FECO (full extract cannabis oil) for about 8 months now. I started off with just CBD but it wasn't helping with the pain very much.

I take a 2:1 THC:CBD so it's quite potent. However I've managed to cut back on nearly 3 quarters of the opiate intake the doctors happily prescribed me. I also sleep throughout the night, which is amazing as I'd not slept for longer than 60 minutes at a time in over a decade.

Is honestly a wonder drug, the fact that I'll still not be prescribed it sucks massively... There's much more campaigning needs doing xx

SarahJane926 profile image
SarahJane926 in reply to gindy

Yes it's the FECO I take too, I think mine is 1:8 so not strong but building it up steadily.

That's great news regarding your pain killers, opiates are so bad for us and addictive but we trust the doctors?!

Much more needs to be done, I agree, even with them 'legalising' it in the UK only 3 types of people are allowed it and it doesn't include any of us 😑 having said that I still wouldn't want cannabis from the doctor, I hear it's synthetic which is not the point!

I'm so glad that it's helping you, do you have a blog or thought of starting one? A lot of people will be interested in your story, especially as our disease is so rare xx

Read your post with interest as I am considering taking cannabis oil, here it in France it is *legal* but impossible to obtain, so will have to get it from abroad. I have Systemic Scleraderma, Emphysema, Pulmonary Fibrosis and Bronchiectasis, hate taking medication and am unable to take Esbriet due to the fact I only have one kidney and have everything crossed that the SSc will not attack it. At the moment, mine seems to circle round my body, it is attacking my hair roots, hair falling out, ears, mouth, teeth loosening, and my hands and one ankle, one skin patch on the back of my calf, that itches like hell on the same leg as bad ankle. Was hoping to find some one with SSc that had used CBD oil and had an improvement in symptoms and/or pain relief.

SarahJane926 profile image
SarahJane926 in reply to

Hi reglois

The cannabis oil is helping me with so many of my symptoms and pain, it can help you too, I am confident beyond a doubt.

It's important that you have fully extracted cannabis oil (FECO) that contains both CBD and THC, I hope you can source some in France. Here in the UK it is illegal and difficult to source, however things are changing and governments are loosing the battle with cannabis - people are taking things into their own hands and seeing incredible results.

Best wishes to you, you won't look back once you start taking it 💚

NikkiDoggett profile image
NikkiDoggett in reply to

If you are unable to get any let me know I’m sure I could send you some. Have a look at the drops , capsules and definitely the oil. As I said before I get everything but the drops from Amazon. I would be happy to get these items for you and post them ? I’ll will attach some pictures of what I use.

Nikki

in reply to NikkiDoggett

Very sweet of you but customs wouldn't let it pass, have looked into it, otherwise I could get it myself. Still wondering if it is worth trying the pet version which is just the CBD oil with everything else removed, THAT I can get past customs because it hasn't got the THC in it.

Thanks there is not a chance of getting CBD oil with THC, wont get it past customs as I have to buy from Holland. The CBD oil worked well for my poor departed dog with his liver cancer, good pain relief there and much cheaper than the human version.... I wonder .... !!!

NikkiDoggett profile image
NikkiDoggett

Yes I’ve been using the oils, the drops under the younger for about 6 months now. I wholeheartedly recommend it. It is amazing.i get it from Amazon at £5.99 a bottle if you want any more info just let me know.

Regards Mrs Nicola Doggett

Abbybobtim profile image
Abbybobtim

Really interesting post and must say that I too have started using Cannibis oil for my Scleroderma, have been using it for approximately 2 weeks after a recommendation and already I have fewer aches and pains and skin feels so much softer, so have to say will certainly continue using.

jonesyg profile image
jonesyg

Great to hear everyone having so much success using CBD oil. It's worth taking a look at the work Emerald Pharmaceuticals are doing on their synthetic cannabidiol drug EHP-101 (emeraldpharma.life/ehp-101/) they're in phase 3 trials at the moment and should have the results early next year. I know people are saying they don't trust the synthetic type of treatment but essentially they're using a compound similar to that found in CBD. They're using to create a drug which targets the receptors which generate too much collagen in the first place (like CBD oil but much more targeted to Scleroderma).

I'm going through the diagnosis process at the moment for suspected SSc, I'd been waking up every morning with all joints in my fingers being really stiff. After reading this thread I went out and bought some CBD oil and sure enough the following day after taking it I woke up with no aches or pains. I keep the oil on my desk at home and generally take it every day, the last week I've been off work and sure enough this morning the aches came back (after not taking it for 4 days). I think this is pretty good proof that it's working.

There really needs to be more research done into CBD products, especially relating to Scleroderma. It would be great to know is it actually modifying the disease or is it just treating the symptoms?

Anyway glad to hear everyone's having some positive results and thanks SarahJane926 for sharing as it's really helped me out!

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