I’ve bought some CBD oil, to see if the hype is justified, but can’t find any information on taking it alongside my other meds - 2 x baby aspirin, and 40mg Propranolol. Have I just wasted my money 😂? Or is it ok to take with these?
I’d like to try it for its anti-inflammatory properties. Any advice would be great!
Sorry Lucy can't help you with that question. I have bought some but so far haven't taken it!!! Really for the same reason as yourself. I'm sure some one will who has tried it will help you .
Regards Sandy
Hi Lucy,
I have PV, I can only speak for myself and would never say for you to take it, as I'm not a doctor.
I'm on daily Aspirin and occasional propranolol, and venesections when needed.
So I took the Bull by the horns so to speak about 6 months ago, after a lot of should I/shouldn't I take it, and all I can say is..for me, it works!
I don't smoke, but I chose to vape an ultra strong CBD, and had such a positive effect on my bone aches and fatigue and sleep! So then I tried CBD oil one squirt under the tongue and so far very good!
I have left it off for a month just to see if I could feel the difference, and within a week the headaches and fatigue started up again, started taking it and within a couple of days I felt relief again.
The other thing is which I can't say is totally down to CBD but my bloods have been at a steady 'normal' level and not needed a venesection for the whole time I've been taking it. That might be totally down to previous venesections etc, but I for one don't think it's a con, I've read loads about it and I truly believe we could be looking at game changer, even the medical profession is taking it seriously now.
If your unsure ask your dr first, and read as much as you can about it.
Sorry for the long reply, but thought it might help.
Jacqui😊
Thank you for the informed response. I too am considering taking it and will pose the question to my dr at next visit. Could you share the brand that you are on, as I would prefer to use from a recommended supplier. Thanks. Penny
Hi Penny,
I will PM you the brand as I'm not sure we're allowed to name things on here, I think it's advertising rules.
I'd just like to add also, that when I asked my GP about CBD(about a year ago), he was non commital if I should take it or not, and said some Drs are for it and some not, but it's more because of the lack of research, but as we know that has all changed now and much more research is being done on the subject, which on the whole is quite positive.
At the time my dr said it was ultimately up to me, to be sensible, read everything I could on it and make as good informed decision that I could.
So I did and as I say for me it's working well.
Jacqui😊
you can pass this information by private message
Hi. I’m using CBD oil & cream for head & muscle aches. Are you in the US? If so I’d appreciate knowing the brand you use. Mine is expensive. I’m trying to find out if it’s contraindicated for those of us on blood thinners. I’ve read it is & also read it isn’t. Please PM me too if you don’t mind. Thanks. Katie
THANKS FOR THAT INFORMATION ....BUT DID IT RAISE YOUR PLATELETS....
Your welcome and no raise as yet, I have another haem appointment in a few weeks so will see if there's any change then, but all good so far.
Hi jacqx17
I've been reading some posts on cbd oil as I'm thinking of giving it a go. Im ETjak2+ and at the moment only taking aspirin however I'm told I'll be on hydroxy when I'm 60 I'm 58 at the moment.
I noticed your post was from 12 months ago so I thought I'd message to see if the oil is still working as good as it was at the time of your post?
I would appreciate any guidance / advice you can give re CBD oil and would appreciate it if you could let me know the brand you use. I'm living in the UK.
Many thanks
Hi there,
Yes I still take it, I’ve tried many brands, strengths, and different types of CBD as there are 2 types Indica (relaxes) or Sativa (energises), plus hybrids that are a bit of a concoction of the 2.
It still works for me, and as I’ve said before I can only speak for myself,
And for anxiety it’s fantastic! I never even thought I suffered with anxiety really, but after taking CBD I’ve realised just how much I did suffer!
it’s the only thing that helps with my bone pain (not sure if it is bone pain, but that’s how I describe it) it helps with the fatigue (doesn’t cure it, but I know when I’ve not taken it) my bloods were steady, well below the 0.45 cut off, for around 18 months, and only recently started to climb, and I’m not sure if that’s more to do with dehydration, as I lapsed a bit with my water in take, but I’m seeing haem next week so will see what bloods are doing then now that I’m back to 3 litres a day.
Oh and my last scan showed my spleen had reduced slightly! I don’t know and can’t say that it’s the CBD, but it’s always been the same size, (I have a scan every 6 months) and it’s thw first time it’s a smaller size in years, so who knows! That’s why more trials should be done with CBD.
Anyway I am happy to tell you what I buy etc but I’ll private message you as it’s against rules to promote products on here I think, and also to endorse some sort of miracle healing drug, which of course it isn’t, its a supplement that can for some people bring relief of certain symptoms.
Which I will also add that you would talk to your haematologist or gp
Or at least tell them that you want to give it a go.
I umm’d And arr’d for quite a while and then thought well why not, I can’t feel any worse than I do! So I did and I’m ok and I’m glad I take it!
But that’s me 😁
Hope that’s helped and I’ll pm you the details
Jacqui 🤗
Thank you so much for your reply and please do send me the name of the CBD you use I will be very grateful. It sounds great and a bonus it helps with anxiety👍
As I said I'm only on aspirin at the moment and I've read people leave 4 hours in-between taking their aspirin and CBD oil so I'll do that too. Are you taking medication for your mpn?
Hi again,
No problem at all I’ll send the products details over.
Although I have PV I’m in pretty much same place as you, I’m starting Hydroxy when I’m 60, I’m 55 now, and I’m on aspirin.
I used to have regular venesections but my bloods have been so good for a good while, I’m just on aspirin and water haha!
I tend to take the Sativa strain of CBD in the morning as I find the energy I get from it keeps me going best part of the day, and then about 6pm I take my aspirin then I take the Indica strain CBD about 10pm.
I also have one that you rub into the soles of your feet before you get into bed and I can honestly say it’s like your feet are wrapped In a cloud! My husband didn’t believe me so I put it on his feet, he was astonished at how relaxed he felt, he said it was like his feet and legs were weightless!
Each to their own! but we love it 😄
Anyway keep in touch and I’ll send you the details.
Jacqui😊
Thanks Jacqui,
This is all very interesting. I’m really glad it’s working for you so far, please keep us posted on any change to your platelets, and bloods generally.
One question I have is, do you have to leave a certain amount of time between taking the aspirin and the CBD oil? I’ve read that they can counteract each other if taken less than 4 hours apart, and this is one of the main reasons that I’m hesitating trying it out.
Thanks so much,
Lucy 🙂
Hi Lucy,
Sorry for delay in replying, I have terrible internet connection where I live.
So CBD and Aspirin... well I take CBD when I get up and when I go to bed, I take my Aspirin around tea time, I personally haven't read anything about the time thing, I've just paced it out to what suits me, I've always taken my Aspirin around tea time, and just thought CBD am and pm is were good times for me.
So far all my bloods have remained good and near 'normal', I think it's too early to say that's all down to CBD but I just know I feel better since I've been taking it, especially the fatigue.
The one thing I would say is the oil or whatever method you use to take CBD, it has to be quite a decent strength, the ones you can buy in health food shops are quite weak, and have reviews saying that CBD hasn't worked etc, from all the literature I've read (and that's quite a lot haha) you have to start with a 'decent' low dose and build to a higher one.
That was the hardest part for me to work out the dosing, but don't let that put you off, I made it more complicated than it is, because I was scared about taking it, I now take it in quite a few different forms and love it 😁, but as I've said before this is my own personal opinion, you have to research and feel ok about it yourself, as there is a bit of 'taking a deep breath and just go with it' type of attitude to have at first.
I hope that's if some help, sorry if a bit long haha!
Jacqui 😊
Thanks so much Jacqui, and that’s not too long at all, the more info about direct experience the better as far as I’m concerned!
I have a little bottle of CBD oil from a reputable company sitting in the fridge. I tried taking it before hearing about the aspirin contraindication, so stopped and wanted to gather as much info as I could before trying it again. As aspirin is the only thing I take for my blood I’m very careful not to counteract it; I was feeling increasingly ill before I started taking it and had lots of ET side effects, so even my two daily baby aspirins are a real help.
I’d also read about starting CBD with a low dose and increasing it gradually, apparently it lingers in the system. I will try it again, starting with a very low dose, and will leave 4 hours between taking it and aspirin, just to be on the safe side.
That’s really good that it seems to be helping you! Very encouraging. I hope it continues to work for you - I think I just wanted to make sure that it’s working for me, and not against my aspirin and beta-blocker.
Thanks again so much! 😄
Lucy
hi Lucy. I’m triple negative ET with platelets just over 1200 in April. I take 100mg aspirin a day only. I showed some info on cbd oil (nothing psychoactive) to my Haemo who said “go for it”. I’ve been taking cbd isolate for a month now. I’m sleeping 8 hours, I’m far less anxious (which has been a lifelong issue) , I’m more flexible, don’t feel fatigued all the time (I’m 76) and platelets are down to just over 1000 as of yesterday.
I know numbers fluctuate so am not saying they’re down because of the cbd oil YET, but Its the first drop in platelet count I’ve had in a long time. I know there are others on this forum who take cbd and its had no effect on platelets. We’re all different. The info I showed the Haemo was of a medical marijuana educator in the US whose platelets came down from 1000 to 350, over time. I feel that even if cbd doesn’t affect my platelets, the other effects I’ve had have been worth it. Hope this helps. Regards Jan.
Me and ET
ET or PV 
ET. Cancer or not?
ET cancer or not.
