CBD Oil

[Mich10]

Hello All

Has anyone used or thought of using CBD oil please? If so what for?

Thoughts please?

Thank you x

[Eoin]

Hi just thought I’d let you know I’m about to start CBD oral spray not sure of outcome but feel it is worth trying. I am 66 with PV ( diagnosed 3 years) only take aspirin although have been advised many times to take hydroxicharbimide. My main aim is to reduce platelet count. I have a clinic mid December so will start taking it 10 days before blood test.

[Hidden in reply to Eoin]

Yay someone like me!! , I am 67 and only on aspirin too. I also was offered HU at 65years, the 'magic age' that things will go wrong. I didnt think age should be a criteria when you dont have any physical symptoms, apart from elevated platelets. Not sure what the oil will do??

[Searcher56 in reply to Hidden]

Are you only on Aspirin? Would you mind telling me your platelet count?

[Mich10 in reply to Searcher56]

Mine was 1148 at my last appointment....

[Searcher56 in reply to Mich10]

That is rather high. How do you feel with such a high count? My count was just over 1000 when I was first diagnosed, it is easily controlled with HU but when my count goes down to 500, I don't feel so well. Now I like to keep it around 600-700. What does your haemo dept. have to say about your platelet count?

[Mich10 in reply to Searcher56]

Haemo said I won’t need to start meds until it reaches 1500.....I am mostly well in myself. I dislike it being so high but nothing I can do about it.

[Hidden in reply to Searcher56]

Hi last check 5 or months ago was 701. Lowest they have been is 601.

[Kelly2 in reply to Hidden]

Same here!

[Mich10 in reply to Eoin]

Hello and thank you for your reply.

I have ET, aspirin only and 56. I also have appointment mid December so I think I will also trial it before I go!

Please let me know how you get on and which CBD strength you used-thank you & take care x

[Searcher56 in reply to Eoin]

You say you are only on Aspirin. Can you tell me a bit more?

[katiewalsh]

Hi, my neurologist recommended it for pain in my hands. So I started it 8 months ago. Lately I’ve had pain in lots of places so I’ve increased it to the full dose and so far I’ve had very little pain. You have to be extremely careful though. Much CBD oil not only doesn’t contain the dose it says, some more & some less, but a lot also has harmful chemicals. At a minimum, be sure you only use CBD that’s been tested by an independent laboratory. Good luck. Katie

[Mich10 in reply to katiewalsh]

Thank you for replying.

Can you tell me where you sourced your CBD?

Thank you & take care x

[katiewalsh in reply to Mich10]

The company is NeuroDirect. My neurologist, who has done a lot of research & written papers on the benefits of CBD, established the company so he could prescribe what he knows is high quality CBD. (I also wonder how much of that decision was based on financial gain.) But he gives presentations around the U.S. and I think he’s highly regarded. It’s an isolate as opposed to those with all the extra stuff left in which supposedly is good for us. I did try those but couldn’t handle the awful taste. Mine doesn’t taste bad & works. One problem is it’s expensive buying it online. And I use the strongest oil and two droppers twice a day so it lasts only a little more than 2 weeks. But as his patient I can buy at his office where is much less expensive. Besides eliminating most of my pain and lessening the amount I do get, it helps reduce anxiety & allows me to concentrate better. I’ve learned a lot about CBD & Medical Marijuana in the past two years. I take the medical marijuana (oil) for migraines sometimes but it tastes so awful I usually use my other pain meds.

I know this is probably more information than you needed but thought I’d be thorough. Take care. Katie

[Mich10 in reply to katiewalsh]

Hello Katie.

That’s fabulous info-thank you!

Take care

Mich x

[francesb]

Hi, do please check what drugs shouldn’t be taken at the same time, I found a whole long list, I remember ibuprofen was on it and ondansatron, both of which I take. Good luck

[Mich10 in reply to francesb]

Thank you that’s a good point. I’m only on aspirin and some health supplements so hopefully that should be ok?

Take care x

[francesb in reply to Mich10]

Aspirin is a NSAID which I found are contra indicated as are many other common drugs. I think specialist advice is needed to be sure.

[Mich10 in reply to francesb]

Yes definitely- thank you.

[katiewalsh in reply to francesb]

Hi. I frequently have nausea after eating as does another acquaintance of mine. We both have an MPN & immune deficiency. Do you mind telling me what causes your nausea? Thanks. Katie

[Wyebird]

Saw a programme on cbd oil. Very encouraging. The only problem is getting the right oil with the right ingredients to suit you. Apparently there are hundreds of species of plants so it’s hit and miss as to wether or not the one you buy has the right mixture of ingredients for you to be of use. If you try let me know your opinion. Good luck.

[Mich10 in reply to Wyebird]

Thank you.

Yes I also watched a encouraging documentary on it and looks very promising. I’m researching atm and will buy some accordingly.

Take care x

[SuET2017]

I use it for when I get bone pain, it helps, and it seems to help me with fatigue, though I haven’t monitored that closely.

As others have said, there are various strengths and types, and the cbd from high street shops tends to be low dose.

I also checked with my haematologist first and he was fine with it.

[Mich10 in reply to SuET2017]

Thank you for replying.

Can I ask which CBD you use and strength please?

Take care x

[Eoin]

Hi my platelet count has been hovering around 900 for about 9 months

[Mich10 in reply to Eoin]

Mine’s around 1100 on average. Are you in the UK Eoin? I wondered why they have offered you medication and I have no intervention until they reach 1500. (UK guidelines I believe?)

Good luck with the CBD oil!

[Eoin in reply to Mich10]

Yes Scotland, I was prescribed HU after my first consultation with haematologist! I think they were under 600 then. Have venesection the past year and a half 6 monthly, which I think is good. Since diagnosis have changed diet which I believe has helped with counts which have been fairly stable. Main focus is on reducing platelets hence trying CBD.

[Mich10 in reply to Eoin]

Thank you.

Yes, I’m desperate to reduce my levels so continues to be my main focus too

[Kelly2 in reply to Mich10]

It seems that in the UK doctors are eager to prescribe Hydro even with 500 platelets! Not so in other parts or America.

[Mich10 in reply to Kelly2]

I think it’s the opposite actually? I’m in the UK and won’t go on any meds until my platelets reach 1500 x

[Kelly2 in reply to Eoin]

Why is CBD oil supposed to lower platelets?

[Mich10 in reply to Kelly2]

Form what I have read, I don’t think it does? (I wish it did!) I would like to try it for neck pain and wanted to know if it had any side effects on MPN patients x

[Tico in reply to Mich10]

Hi Mitch,it is not just your Platelet count taken into consideration, it is also your symtom burden, age and your risk factor that they look at before commencing meds in the uk.

[Mich10 in reply to Tico]

Hi Tico

Thank you for replying 👍

Yes I’m aware of other risk factors. I am healthy with no other problems, so I am being monitored to check that levels don’t reach 1500 before I have to go on meds. I really don’t want to start meds....

Take care x

[Tico in reply to Mich10]

You too Mitch, keep us updated about the cbd oil. Atb, tina.🤗

[lizzziep]

Hi, I have been using CBD oil for my arthritis pain and it has really helped, not made any difference to my platelet count. I get Entourage oil from Love CBD, it's not cheap, but it really does take some of the pain away, it takes a couple of weeks to kick in. I spray under the tongue 2 - 3 times a day.

Lizzie x

[Mich10 in reply to lizzziep]

Thank you Lizzie

I have ordered some from Love CBD but I found the different types confusing. I don’t remember seeing an Entourage oil. I am so pleased it’s working for you

Take care x

[lizzziep in reply to Mich10]

I spent a long time going through different reviews for cbd oils, most of which I didn't understand, apparently if they contain cbda and terpenes they are better, but that's about as clear as mud to me! x

[Mich10 in reply to lizzziep]

Yes I’m also doing as much research as I can! 🙈 x

[hunter5582]

I have a JAK2+PV age = 64. I discontinued both aspirin and HU on the advice of the MPN specialist I see who stated that my risk for bleeding was greater than my risk for clotting and that the toxic effects of HU outweighed their benefits in my case. I am fortunate to have a relatively indolent form of PV, never any incidents of thrombosis, DVTs, TIAs, etc. This doc does not favor "sanitizing" blood cell numbers, focusing on controlling symptoms that actually cause a problem. Hence, I am now on a phlebotomy only regimen. This has controlled my erythrocytes really well, but does nothing for platelet levels that cycle between 500K-750K. The thing I need to pay attention to is meds or supplement's that increase my risk for bleeding as that is what I am prone to when my platelet levels go up.

Like you, I have considered CBD oil to help manage the other secondary symptoms I experience. The JAK2 mutation causes an increase in inflammatory cytokines that can trigger multiple issues of systemic inflammation, which for me include: eczema, GERD, osteoarthritis, plantar fasciitis, insomnia. I have used a specific formulation of Turmeric/Curcumin for years now that is so effective that I have not taken an NSAID in over three years. That opened my mind to the notion that at least some supplements can really be effective. I recently consulted with an Integrative Medicine specialist, who has recommended something other than CBD oil. She suggested a trial of Low Dose Naltrexone (LDN). I am likely going to try the LDN and see how it goes. Another one of my docs pointed out the importance of setting specific markers for effectiveness to monitor whether any benefits are being achieved.

The issue with supplements like CBD oil is their consistency and quality. Regulation of supplements is not as rigorous as regular medications and that can cause problems. Also - CBD oil formulations are not all the same. So, what therapeutic benefits do you want to achieve? What are your markers for effectiveness? Is there evidence in the research that CBD oil is effective in achieving those goals? Do you have a reliable source for a quality CBD oil supplement?

Hope that helps. Please let us know how it goes.

[Mich10 in reply to hunter5582]

Hello and thank you for a good & informative reply.

I am still in the process of researching, which is going well!

My aim is for the CBD oil to help with the pain I get in my neck (cervical straightening of the lordosis) but I didn’t want it to raise my platelets, they are hovering around 1100..... I’ve found many good reviews from the company LoveCBD but still looking.

Take care and hope you stay well x

[beetle]

I was thinking of using CBD oil for bone pain in myelofibrosis but it apparently has potential to interfere with absorption of Ruxolitinib similar to grapefruit so I have not used it

[Mich10 in reply to beetle]

Thank you for your reply.

Take care x

[Stephen399b]

I have ET and Mastocytosis. I tried CBD oil for platelets and also to see if it helped with terrible cramp that I get in legs.

No difference to either after 6 months, so stopped. Pity.

[Mich10 in reply to Stephen399b]

Oh that’s a shame!

Thank you for replying x

[Anag]

Hi Mich,

I’m thinking of CBD. I just finished watching a documentary series called Hidden Within, the Power of Miracles. It finished today. There should be a rerun this or next weekend. It’s really worth listening to.

CBD and THC are both known to have an effect on cancer cell walls (breaks them down) and can stop or reverse angiogenesis and also cause cell apoptosis. There are studies on animals. Results in Humans are only anecdotal. We are just at the beginning of knowing what this plant can do for mankind. A lot of knowledge has been lost, since it’s prohibition last century.

My daughter has fibromyalgia and CBD oil if the only product that has ever alleviated her pain!!! It definitely works against pain. THC is stronger and psychoactive

hiddenwithindocuseries.com/...

Hope this helps.

ANAG

[Mich10 in reply to Anag]

Hi Anag

Thank you for replying.

I will definitely look at the link, thank you so much!

What TV channel is it on please?

Lovely to hear your daughter is finding the pain more manageable too 😁

Take care x

[Anag in reply to Mich10]

It’s on internet. Very easy. 🙂

[Mich10 in reply to Anag]

Thank you 😊 x

[charl17]

I tried CBC oil briefly. I noticed a mild tranquilizing effect.

[Mich10 in reply to charl17]

Hello.

What did you try it for and what strength was it please?

Thank you. 😃

[charl17]

My daughter thinks it helps her so I tried it. I squirted an unknown quantity under my tongue before I went to bed. I have PMF so I get fatigue.