CBD oil

[Graham7694]

Has anyone with MF and on Ruxolitinib tried CBD oil?

I have a good deal of pain in my back and haemo says to go to doctors to get some nerve pain pills which is not something I want to do as am enough of a zombie most of the time anyway!

I packed the fags in when I was diagnosed and so vape instead.

I have ordered some CBD vape oils in various strengths and also some isolate pure CBD to drop straight onto my tongue. Would be keen to know who else has tried it

[Kimhock]

Hi Graham,

I don't have MF nor am I on Ruxolitinib but I felt compelled to respond.

My situation is ET triple negative (platelets hover around the 860 mark) and I only take pycnogenol as an alternative to asprin. I do however suffer terribly with pain - osteoarthritis in both knees and severe neck pain from cervical spondylosis. Due to my mpn my hematologist advised that I avoid nsaids at all costs and I generally can only take panadol for pain.... not very effective

After some research I decided to give CBD a chance - I started taking Native Botanics Organic Hemp Seed Oil Drops 10% (1000mg) - Full Spectrum, 100% Pure, Natural & CO2 Extracted Herbal Oil on the 1st October. I take 2 drops in the morning, 2 drops at midday and 3 drops an hour before I go to bed. I probably have a day's worth left in the bottle now, so it lasts nearly a month. It is not cheap, but be sure to get the best you can afford - there are a number of really cheap, low mg options out there that are not at all effective. Native Botanics also do a 1500mg as well as a 2000mg option as well. Best is to start slowly and I think you will know if you need to move to a stronger option as you progress.

What I can tell you about my experience this far is that the pain in my knees has greatly reduced - I still feel mild pain, but nothing as intense as it used to be. I could barely walk a few weeks ago, and on Sunday past I managed an hour's walk on dartmoor. Also my mood has lifted (I have suffered with extreme anxiety for the last five years - soon after I quit smoking actually :)). I sleep better when I take 3 drops before bed time and my neck barely bothers me these days. It is not a huge, instantaneous change - but small things that you notice as time goes on. It tastes horrendous and I chase it with coffee lol!! I originally tried cbd e-juice and didn't notice any difference at all - but I guess it depends where you get your juice from really.

I spoke to my hematologist before starting on the cbd oil and she was in agreement that it would be worth experimenting with and is keen to test my bloods after 4 months to see if there is any effect at all. I guess I'm her guinea pig right now.

Whether or not it has an effect on platelets doesn't bother me too much, it's the pain I want to see relief on so that I can have some quality of life back again.

Good luck - please do let me know how you get on.

K.

[111xxx888 in reply to Kimhock]

DID IT INCREASE YOUR PLATELETS ... REALLY NEED TO KNOW .... I AM GOING TO TRY IT BUT IF IT INCREASES THE PLATELETS I WILL NOT .... THANKS FOR YOUR HELP

[Kimhock in reply to 111xxx888]

I will be amazed if it eventually has any kind of effect on platelets. I'll only know if it has when I see my hematologist again in February. I would always recommend that you discuss any supplements & dosage with your doctor first though.

[111xxx888 in reply to Kimhock]

I HAVE SPOKEN TO MY DOCTOR AND HE SAID HE DID NOT KNOW .... NOT ENOUGH TRIALS AND TESTING DONE ON IT ..... THANKS KIMHOCK

[SuET2017]

Hi Graham

I’m ET triple neg, but also get bone pain/aches (not sure of reason) and was suffering lots of nausea from hydroxy. Started taking CBD oil (under tongue drops) about 3 months ago and both above have more or less stopped.

(I have since changed to interferon, but that was after starting to use the cbd). It’s certainly worth trying in my opinion.

Hope it goes well

[Mysi in reply to SuET2017]

Where can I buy CBD OIL, I’m suffering from bone pain, PRV jac2pos. Paracetamol no good. Gp prescribed Amytriptoline at night but pain breaks through. Thanks.

[Graham7694 in reply to Mysi]

There are a lot of places on the net and also many shops stock it. The worrying thing is that a lot of the CBD oils are full strain and can show up the THC in your blood tests. I am getting mine from a chap in Preston and he uses an isolate which is a pure CBD oil that doesn’t use any of the other parks of the plant which may make you high. He is very helpful and I found him on Facebook after a recommendation but he does have a website so it may be worth emailing or phoning him. I had mine arrive yesterday and I cannot believe the immediate difference it made.....

[Mysi in reply to Graham7694]

Thank you so much. I see my Heam Pharmacist on 2nd Nov. I will have a chat to her. Best wishes x

[Mazcd Partner MPNVoice in reply to Graham7694]

HI Graham, I have deleted the website address, if anyone wants it can you pass it on via private message. Thanks, Maz

[Graham7694]

Thank you for the replies. I have emailed my CNS and hopefully when I get home today I will have a parcel. I will keep you informed as to how it goes but I reckon it is definitely worth a try 👍