CBD oil

[ali5son]

Has anyone read these articles by Pam St Clement ( Pat EastEnder s ) She has been using this for her Polymyalgia since becoming resistant to steroids. Have been using for a month alongside my pred. Had bloods done so interested to see results. Hoping this will help manage lower my dose.

[PMRpro Ambassador]

What articles? I'd heard something about her doing some TV programme but that is all.

I wonder how people define "resistance to steroids"?

[ali5son in reply to PMRpro]

If you Google her name article comes up.

[PMRpro Ambassador]

I have said before - I would love to see a study on patients with PMR using CBD oil as a potential steroid sparer. I do know a couple of people who use medicinal cannabis and say it helps - but they think it isn't a case of it relieves the pain, they just don't care as much (they say that, not me). That isn't the case with the CBD oil of course.

[ali5son in reply to PMRpro]

Will update post with my blood results when I get them on Friday will be interesting to see if any change

[Hidden in reply to ali5son]

If you have been taking pred alongside how will you control for whether change is pred doing it's its job or oil? I just wondered if you have consider a way to do That?

I watched the programme where Pam at Clements went to USA with other celebs to try medicinal cannabis. Let's just say she wasn't backwards at coming forwards trying the recreational and medicinal smoking and edible variations. I know she said she had PMR and TA/GCA BUT she gave no indication how long she had it in the programme. Like PP i would like how steroid resistance defined by her/article. I am on SSA at 9.5mg PMR dx june 2016.i will try the google!

[ali5son in reply to Hidden]

Blood levels up slightly as I have tapered from 20mg to 9mg. Last at 16 so hoping no big rise as been at 8mg a while and now tappering to 7 using Dsm. Doctor not concerned as long as stay under 20.

[Hidden in reply to ali5son]

I will keep my fingers crossed. I hit problems at 8mg but think I came down too quickly as per Dr. I didn't know any better then.lol. glad to know some drs are supportive of slower taper.

[ali5son in reply to Hidden]

Was diagnosed June 2016 started at 20mg. They suggested 2mg a month but found this forum and if I feel stiff I go up or stay where I am for a while. Bit concerned about going to 7mg but on 2nd week of taper and so far ok.

[Hidden in reply to ali5son]

That's sounding good. I am in 2nd week of 9.5. I think I feel better than at 10mg but 9mg was too bigger step. I don't get pressure from gp. Rheumy a bit but they keep giving me pred to cover what I am doing.

[ali5son in reply to Hidden]

I use the DSM and not had pred withdrawal since doing it this way

[Hidden]

Just checked cdb oil from Holland and Barrett. £19.99 for 10ml/@240 drops. At recommended max 15drops a day my calculator says 16days worth. Would try but too rich for my blood sadly.

[PMRpro Ambassador in reply to Hidden]

Quite!!!!!! Is it gold-plated?

[ali5son in reply to Hidden]

Got buy one get one half price. Don't take 15 drops a day take at night when feeling wee bit stiff .

[Hidden in reply to ali5son]

They do have buy one get one for 1p at moment. Might be included??

[Hidden in reply to ali5son]

I am hoping that the research she mentioned in December artlcle starts a few studies and if positive outcome it gets approved. I have my fingers crossed I will be off steroids by then. I presume it takes several years to get the go ahead. 🌻

[ali5son in reply to Hidden]

Just thought I would give it a try.Problems and flare seem to happen the lower you tapper. Just trying to manage in the lowest dose

[BonnyQuine in reply to ali5son]

Well, I had problems tapering (fr 40mg Nov 2016) all the way down to 9 mg, but since then have found it ok. Reduce by only half mg at a time, and maybe even slower than DSNS. Now on 8mg, tentatively trying 7.5mg. So far so good. Fingers crossed.

[HeronNS in reply to Hidden]

Re price of cbd oil: when I started looking into this a couple of years ago I read that this particular byproduct of medical marijuana industry in Canada was basically being tossed out! Unbelievable! Hopefully it is now being diverted into a more useful stream.

It is effective for some kinds of intransigent childhood epilepsy which kind of proves to me that it's got a genuine effect on the body.

[Hidden in reply to HeronNS]

It's a shame they are charging so much for something they were throwing away.

[HeronNS in reply to Hidden]

I actually don't know how much it costs here, as you need a prescription in order to be able to buy it.

[Hidden in reply to HeronNS]

I really must get eyes tested. I was reading on the link and it said edibles like candles or baked goods....i was wondering how you consumed a candle and realised it said candies. Makes more sense!

[HeronNS in reply to Hidden]

Actually, I correct myself, it was a byproduct of the industrial hemp industry, not medical marijuana. I think that would include the source of hemp seed oil and hemp seed which have always been legal here, but cbd comes from the leaves, and that was what they were discarding. I did find a price list and it is appalling. They even describe the different kinds as silver, gold and platinum!

[Carrot1]

I am taking CBD oil twice a day at the mo. I have been feeling better lately but I guess it could be coincidental.

[ali5son in reply to Carrot1]

That's great

[HeronNS]

This website gives a good overview of cbd or cannabidiol, including how to manage dosage:

beaverbud.com/blog/buy-cbd-...

[Griggser]

Just bought some after being quite confused with all the different strengths and varieties. Any way after talking to the guy in the shop I bought 10mg of 4% strength and take 4 drops per day. Cost was £23.99. I gather you can go up to 40% strength but it’s best to start off lower and build up if you need to. The one I’ve opted for is with hemp oil, also comes in olive oil. I think next time I’ll go for the olive oil as at least I like the taste of that, not so keen on the taste of hemp oil🤪

[Maz48]

I have done a lot of research into this on line & found that cbd shouldnt be used with preds as it can harm the effect of the steroids. I had tried 2 bottles before i found this out & it didnt do anything for my pain etc. So stopped using it.

[Hidden in reply to Maz48]

Hi maz. .have you details of where you found info 're cbd and pred please?

[Maz48 in reply to Hidden]

I punched in cbd for & against, & it came up there.

[ali5son in reply to Maz48]

So far have had no problems and think it helped when pred wearing off. But may all be in my head. Will see if my blood levels are up or down as to whether I continue with it

[S4ndy]

I have been using CBD oil since July 2017. I started it because the painkiller I had been taking for 30+ years was no longer available. It was for lumbar spondylosis back pain initially. I am codeine resistant in that my body does not process codeine for it to help with pain.

I am no longer on any opioid painkillers. In fact I take only 2 paracetamol a day now. I am finding that the CBD helps with the pain (Osteo). However a great benefit was one I didn't expect, the oil I take helps with the fatigue and the paste with stiffness. So helping with a couple of the PMR /Steroid problems. My IBS has improved too.

I researched CBD and looked at all the options available. Holland and Barrett very pricy for a weak CBD but some people swear by this. I use a variety of oils/paste from CBD Brothers who start their product at £7.95 for a 10ml bottle of Green oil which has about 200 drops per bottle and as you don't need much, say 2 drops 2 or 3 times a day, works out reasonable price. They are ethical too and will give out samples. I have no connection to the company but use three of their products. Unfortunately at the moment they cannot give advice on medical conditions so you do have to do your own research.

Pam St Clement uses Love Hemp products and it helps with her stiffness from what I have read. Holistic Hemp of Scotland and Synergy of Nature another two good CBD companies.

Research being done still. No large studies yet so mostly anecdotal. Project CBD is a good place to look.

projectcbd.org

Works for me and my gp is supportive as he has seen the difference and I am not on any opioid meds now. Not saying it works for PMR pain as still taking steroids. Does help with other things though as detailed above.

There's a lot of info out there but beware there are charlatans trying to make a fast buck too.

[ali5son]

Wee update for those following my thread levels down from 16 to 12. Was at 12 when on 12mg of pred now at on 2nd week reducing to 7mg

[oiseau222]

I'm not familiar with the author, but I am an avid fan of CBD topicals. I have vasculitis, severe migrianes, myofascial pain syndrome, fibromyalgia, arthritis, degenerative disc disease and more. That is, lots of pain and I'm unable to use NSAIDS, because prior use of them poisoned my kidneys. Opiates etc don't really get to the pain.

My docs have prescribed compounded pain creams, which comprise ketamine and other ingredients, including nsaids. These help the pain, but the nsaids make them taboo.

I've used/use cbd oils, which go under the tongue, as well as the topicals. I don't think the oil works, but the salves, creams etc are miraculous for me. I rub them onto the affected area and with ten minutes, the pain is diminished. I use it on my temples, neck, scalp, behind the ears, as well as aching joints. Knowing what I know now and having spent a lot of money on different sublinguals and topicals, I would stick with the topicals. They don't work for everyone, but I know they work on many people. I asked my massage therapist to use some on my back and she told me her hands didn't hurt anymore. She is carrying in her studio for clients who want it.

It doesn't last forever...a few hours or more, depending on the amount of cbd in the cream and what other ingredients are there (e.g. camphor, arnica etc.)

Happy to answer any questions if you want to message me or respond.

Good luck. Pain is such a miserable affliction, and there is so little we can do to help ourselves.

[powerwalk in reply to oiseau222]

Oooh you have me wanting to try salve or something - I'm always rubbing stuff into me - I need a bodysuit of numbimg cream to be honest. Is there a particular brand that is good and strong to use as a salve/cream? Thank you.

[oiseau222 in reply to powerwalk]

I am in the U.S. and have tried several brands. I don't know about the European market. Let me know if you are in the U.S.

The sublingual oil (and other cbd products) did give me more energy. I can't swear to this though. The topicals absolutely helped me and have helped friends who don't have health problems but who have pain.

I think that sellers are getting as much as they can for cbd, The prices will probably drop in the future. The expense is determined by the amount of CBD in the oil or the salve. The stronger the product, the more expensive. You can purchase the oil for as low as $30 an ounce, but the bottle 100mg per ounce. If you calculate the number of drops you need to get a "therapeutic"dose, this may end up being more expensive than you think, but it is a good purchase to try the product out. Some cbd oils have 1500mg per ounce and cost $150 for an ounce, but you get more cbd per usage than one that has 100mg/ouce.

The topicals work differently. My favorite has 46mg per ounce. It's a salve and I have no idea how much I use at one time. Not a lot, because it smoothes on easily and I use say one finger swipe for both temples.

I have to mention that I have tried five or six topicals (from lotion, oil, spray and salve). Some of them smell too strong for me and I have given those jars to people who do not have such sensitivities. It isn't that the odor is bad, it's just that I don't like to be overwhelmed by vanilla, floral or fruit scents.

I take prednisone and mycophenate and have not noticed any difference in my blood work. My two drugs seem to keep the inflammation at bay. The topical has nothing to do with ingested prednisone.

I hope this helps someone out there.

[powerwalk in reply to oiseau222]

Thank you so much for you reply. I am in Europe. Ihave ordered a salve to see if it will help with pain. I have very bad foot and ankle pain.!!! I'll try anything. Thank you.

[oiseau222 in reply to powerwalk]

I hope it helps your pain, Powerwalk. Please let me know if it does. Remember, you may have to apply it again after several hours.

[Hidden in reply to oiseau222]

The power of touch even if your own is substantial in terms of messing with pain gateways and release of feel.good hormones. So if a salve or cream is applied topically it probably will be more effective than either sublingual or other applications. I have used "dog oil" in the past on my knees. I believe it's what they used on greyhounds rather than being made from dog!! In fact I checked and it's rapeseed oil and petroleum jelly. Cheap as chips.