Everyone has a different metabolism and we all react differently to the way our body responds to treatment but my recent results have given me hope and I feel I have a little bit more of control of my condition. Haematologists are not really interested in... and I hate using the phrase 'alternative medicines or diets etc' and what I mean by alternative are things that we can take everyday, which for me, have reduced my counts. I have PV and recently had a clinic, my consultant was 'very pleased' with my bloods. Having PV, the main aim is to get hematocrit down to a safe level which venesections achieve, because this procedure can increase platelets, I was focused on getting platelets down which I think I've done by changing my diet, without going on and on I would research this deeply and find what best works for you, doing this will give you focus and a bit of self control over your condition.
Thank you for your response. My son has PV also. He has such clotty thick blood they can't get a full bag. He has to go to hospital to scan for vein. His numbers are at 50 so not SO very extreme, but he can't really function at that level. He does best below 45.
He realized today that when he used cbd oil regularly a while back, for about a year,he did not seem to have blood issues. I wonder why some go high and yours low. Once he gets his back down, he may try again to see if it does help.
i don’t know if CBD oil will increase platelets but I recently attended a patient symposium on MPNs at Weill Cornell Hospital in NYC where one hem suggested that marijuana might affect some markers in the blood. It was at a workshop for PV patients. The doctor told of a teenager- being treated for PV - whose bloodwork had suddenly risen to alarming levels. The doctor was trying to figure out the cause and asked the boy (in private , when his Mom wasn’t present) whether he was smoking marijuana. The boy said he was and agreed to stop . His blood resumed previous levels. I’m not familiar with CBD oil but when I googled it it said it was cannabis- related . At least that’s what I understood.
I’m always looking for ways to reduce inflammation - naturally . Like you, I try to do it through diet. I don’t know if it’s working. My hem says there’s no evidence of diet having any impact. I hope he’s wrong. But, he did tell me not to take turmeric.
I've been using high CBD cannabis oil for more than 5 years now and it has lowered my platelet counts. I have E.T. JAK2. I also have seen lowered counts when I added a higher dose of turmeric root or curcumin to my daily supplements. Hope this helps. Oh no hydrea just daily baby aspirin.
I’m answering just to let you know that many folks may not have answered because they aren’t familiar with what that oil is. I’m not. Good luck to you. Katie
I have ET and on HU. I think diet is the biggest driver of inflammation. Have you tested for food sensitivities? Do you avoid gluten and dairy which seem to be the common things folks cut out first. My hematologist has patients on CBD but could be for pain and help with chemo side effects. I don’t think there are any studies on if they reduce platelets. He also has patients on LDN, low dose naltrexone which helps inflammation but there are no studies that I can find that it lowers platelets. I’m on it for 8months and it has helped me with fatigue and inflammation but not yet lowering platelets ( except for the first month then when I tried to raise the dose my platelets jumped. Finding the right dose takes time. I hope this helps.
I’m afraid I have no idea if CBD oil has an effect on platelets. I have used it in the past for joint/muscle pain and it eased the symptoms. This was before I was diagnosed with ET so I don’t know if it helped with the platelets or not. May I ask, what makes you think it would have an effect on platelets? Perhaps the companies who sell it may be of help?
Sorry I can’t be much help but would be interested if you find out
It did seem to ease the muscle pain, making things less tight and sore. I took it last winter when my aches and pains always seem a lot worse and I’m sure it helped. I haven’t got any for this year more down to forgetfulness than design but am seriously considering it.
Yes, I’m ET Jak2+. I was diagnosed with Fibromyalgia a few years back, hence trying the CBD oil. Now I don’t know if the fibromyalgia symptoms were ET all along or whether I have both. The explained symptoms for both ET and fibro seem so alike I don’t suppose it matters what label they have - they still hurt!
Good luck with the CBD oil. It’s not cheap but if it helps, it’s worth every penny. It may be best to check with your doctor before trying it out, to make sure it doesn’t clash with any medication you are on.
Hi, I've been using CBD regularly now for 3months and would say it has helped and I feel OK, for my leg pains I use the CBDointment and for inflamation CBD infused oil and CBD tincture, I get it from Sisters of the Valley in California, it is all lab tested. I don't know if it lowers platlets yet but I do feel less fuzzy and dizzy in the head I have less ringing in the ears.. So so far so good .I have PV and ET. Good luck Angelax
No it has no THC, it is pure CBD, they send it first class, it takes 5-7days and is tracked. I get the 500mg, it is a quarter full, so it has lasted nearly 3months, shipping cost is about £7- £10. x
I had blood tests this month , I haven't heard from consultant so I am thinking all is OK , my next blood test is march and I will be seeing the consultant too, and that would give me a more wholesome reading for the effects of CBD. I will let you know Rose.. Take care. Angelax
The CBD oil and CBD tincture I take daily I started taking it every 3-4hours and started feeling better immediately, after about 2weeks. I cut down to twice a day, and I hover between 1-2 times a day, if I feel abit dizzy, I take a drop and it clears. The CBD is made by Nuns and they make it during moon cycles, they believe it has extra healing because of the Moon and their prayers. I don't know about that, but I do feel better and I was having infection and antibiotics one after the other. I will say the Sisters are genuine and the oil is pure. Make sure you go on the Sisters website Sister Kate runs it.
The nuns only sell their own products, they make the oil, the tincture, the balm, soap and a few othercbits. They have a lilac leaf as a logo, they sell the oil and tincture in 250 and 500mg. It is in Winton CA.
An article in the British Journal of Pharmacology - Endocannabinoids and the Haematological System (ncbi.nlm.nih.gov/pmc/articl... shows that cannabinoids increase both platelet activation and aggregation. Since those of us with PV already have over-enthusiastic platelets and because marijuana users have been shown epidemiologically to have much higher rates of ischemic strokes and MI's, (i.e, both caused by thromboses) I'm staying well away from cannabinoids even though I'd love to join the party!
BTW - the best place to research medical questions - MPN or others - is Pubmed - a huge database of professional research paper abstracts. ncbi.nlm.nih.gov/pubmed/
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