ET & CBD OIL: Can anyone tell me if we have ET can... - MPN Voice

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ET & CBD OIL

130396 profile image
18 Replies

Can anyone tell me if we have ET can we use CBD Oil?

I know if you have inflammation it increases your platelets, so, as I have inflammation I'm told that CBD Oil will reduce inflammation and pain.

My theory is, that as inflammation increases platelets, using it to reduce inflammation should in turn lower platelets.

Would my theory be correct?

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130396
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18 Replies
nspann1 profile image
nspann1

Hi,

I’m in a similar situation to you at the moment, I have some oil as well and debating whether to try it. I have MF and was diagnosed about 12 years ago, I’m currently taking Ruxolitinib 15mg twice a day.

One of my sons has been speaking to somebody that had cancer and has been taking the oil regular and his cancer has cleared (might be coincidental, I don’t know).

I was thinking of having my next set of blood tests and possibly trying it after that for a 10 week trial until I see my consultant again? I’m told that it’s harmless and is supposed to be a possible cure but frowned upon.

Let me know what you decide.

Nick

130396 profile image
130396 in reply to nspann1

Hi Nick

Did you do a trial of CBD Oil? If so was it beneficial?

Rastavapa profile image
Rastavapa in reply to nspann1

I take cbd oil regularly it has not affected my platelets either way I just find it helps with the side effects of et and the Hu and pegasys, it helps me sleep and eat and I find it especially good for restless leg, this is All just my personal experience with it although if you do some Web searching it seems very popular atm, take it easy

130396 profile image
130396 in reply to Rastavapa

Thank you very much for that reply.

I also keep getting an aching muscle in my back so I wondered if CBD oil would help that too.?

Can you recommend one?

Rastavapa profile image
Rastavapa in reply to 130396

I find it seems to work well for minor pain, you can buy it directly from Holland and Barrett it's normally around £15 or £20 a bottle but you only use a few drops under the tongue or there are many online sellers just stick to a proper branded bottle, the government has now recognised cbd as a medicine and as such it has regulated the quality because I suppose it all has to be made to there guidelines now. You can even buy hemp tea bags which work well too and hemp flowers that can be vaporised, hope this all helps, nick

130396 profile image
130396 in reply to Rastavapa

And do you know if it’s ok to take when having ET?

Does it affect the platelets at all?

Rastavapa profile image
Rastavapa in reply to 130396

I have et calr for twenty years was on Hu for most of the time and now on pegasys at guys, it has no effect on my platelets just helps me get on with life...

130396 profile image
130396 in reply to Rastavapa

Thank you very much for your reply.

I’m thinking of using it for inflammation as I know inflammation causes platelets to go up. I’d rather treat that than have my HU increased as it has been recently.

Are you under Claire Harrison T Guy’s?

TIA

Rastavapa profile image
Rastavapa in reply to 130396

Yes I am now under proff Harrison although I normally see Dr Mc lornan I think his name is, cbd is a natural anti inflammatory so it would be interesting to see if it works for you

130396 profile image
130396 in reply to Rastavapa

Thank you. What make do you personally use?

I think Claire is lovely. I’ve seen her a couple of times but my Haemo is in Worthing. It was he who told me about inflammation and how it affects platelets.

So I thought if CBD Oil doesn’t increase platelets then I’d give it a go.

Is it addictive???

Rastavapa profile image
Rastavapa in reply to 130396

I've tried alot of different makes they all seem to work they come in different strengths and the price varies according to how much cbd is in the bottle so just start with a weaker one like the one Holland and Barrett sells on the high street, and cbd is non addictive or psychoactive

130396 profile image
130396 in reply to Rastavapa

Thank you very much for your guidance

gengland profile image
gengland in reply to 130396

How have u done? My sister is having side effects with HU, and its alarming me. Also may I ask how high ur platelets are? Shes hanging around 900+ and is on 3 500mg doses a day. Shes having swelling, diarrhea, and now hives.

130396 profile image
130396 in reply to Rastavapa

Hi again

Can you tell me if your trial if CBD oil was successful and if it did affect your platelets at all?

I know you said you do use it

Many thanks

Mazcd profile image
MazcdPartnerMPNVoice

Hi there has been a query about this before you might like to read the posts

healthunlocked.com/mpnvoice....

nspann1 profile image
nspann1 in reply to Mazcd

Thanks Maz,

Nick

130396 profile image
130396 in reply to Mazcd

Hi Maz

I couldn't see anything that says if it lowers or increases platelets or if it has no effect on them?

I'm trying to see if it raises platelets as I don't want that to happen!!!

I really wanted to use it for inflammation as my esr level is above range ) probably due to my osteoarthritis)

But do not want platelets to rise.

Would Claire Harrison know if it would raise platelets.?

Mine were only 550 when put on HU

Hope you're keeps my well

Rose

130396 profile image
130396 in reply to Mazcd

Hi Maz

I remember lied further down.

Rose

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