considering CBD, along with tapering prednisone - PMRGCAuk


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considering CBD, along with tapering prednisone

arvine profile image

long time since i have posted, and have had a lot of family crisis in last 2 yrs, as well, started at 40 mg 2 yrs aga thx giving, down to 8, going to reduce to 7mg dead slow method, recommenrytded by rheumy, i am still coping with my son,s diagnosis of multiple myeloma, since year ago last june, went thru stem cell , be a year this jan, other family is crisis mode, other son lost everything , dependency on drugs, at age 45, grandaugter,had to give up custody of daughter 2 yrs ago, postpartum depression, no properaccomodation etc, unbelievable 2 yrs, but first and foremost on my mind, or at least want to put that there is my son, diagnosed, no cure, but he is doing ok so far, on maintenance,andvery positive, anyway,have been advised by him, and others try the cannibis low to no THC, help my anxiety, depression, ,sleelpless nights etc, cananyone out there tell me if they have tried CBD, for these symptons, and stress, help them reduce their pred dose

17 Replies

Wow. Seems like your son is young to be diagnosed with Multiple Myeloma. My mom had it and back then it was thought to be an older person disease and usually women. I guess like PMR! I didn't find that the cbd oil helped me sleep. I didn't really notice a difference taking it. Hated the oil so trying pills now. You have been through a lot. Hope you can find something that will help you. You need to take care of you.

arvine profile image
arvine in reply to Mikb

thx Mikb, I meant the pills, sorry, cbd,pills, so you were taking that , and you found them helpful for sleep, my mind does not want to turn off many nights when i go to bed, my son is 49 years old, and actually my late husband was diagnosed at 45 and passed some 20 years ago after 4 years of being diagnosed, but medicine has come a long way since then, and actually, he was my son,s stepfather, so was really strange coincidence, same disease,

Mikb profile image
Mikb in reply to arvine

Wow. That is strange though I don't think MM is hereditary (hope not!).

I have tried CBD oil and find it very difficult to sort out if it's helpful. What with lowering pred and trying to figure symptoms... That alone is difficult. It is also around $80 a bottle. Expensive for me. I had no side effects tho and felt it was worth a try. It seemed to help a lot at the beginning. Once I ran out I didn't miss it. There isn't much guidance yet for dosing so you are on your own. I think one day it will be valuable when medical dosing and medical coverage is available.

Dear arvine, I just wanted to express my sadness for the truly horrible, challenging time that your family is going through. It is difficult to believe what life can throw at us sometimes. It must be so difficult to take care of yourself with all this happening. I can’t help you with your specific question because I haven’t tried it yet. I just wanted to send you some love and prayers. Xx

arvine profile image
arvine in reply to SheffieldJane

thank you so much, appreciate

Sending you lots of support in your tough times. I tried cbd oil and I have to be honest it was a waste of time and money. Tasted like the worst thing on the planet and smelt like the wrong end of a cow! Save your money and use it for something else that will relax you. Good luck.

HeronNS profile image
HeronNS in reply to

That's interesting. I was under the impression it was the thc which contained the smelly terpenes, although the article linked below describes a lot of other substances. Around here I thought there must be skunks living near my neighbourhood, then I realized it was the disgusting smell of a certain type of marijuana. It used to smell not unpleasant, but now the new strains are quite off putting. Btw, never tried it in any way shape or form so my experience of cbd oil is nil. But it sounds like you got an unpleasant batch.

in reply to HeronNS

I just assumed that they all tasted the same. The one I bought was from a health food shop. Here in the UK that's the only type you can get. Although I recently seen that some states in the USA are now making cannabis legal. Never tried the stuff myself but if its anything as bad as the liquid then I would never want to try it. lol x

HeronNS profile image
HeronNS in reply to

I think any kind of smoking is bad for you, and bad for the people who inhale it second hand. Marijuana use has just become legal across Canada and it seems like in some places the medical use has become a poor sister to the recreational market. It's been legal for medical purposes for some time and I was waiting until it would be easier to get cbd oil before trying it but it looks like in my province it's now actually going to be harder to access any medical products. It will likely all be on line and you won't have the guidance of trained staff as used to be available in the (sort of illegal) clinics. Now that the government is selling recreational pot (in a handful of liquor stores no less) the police have clamped down on the private clinics which served the medical users and they can't afford the fines so are all closing.

So sorry Arvine to hear about your problems. All of that stress will not help your condition at all and anything you can get to relieve your pain would be helpful. I use cannabidoil when the pain becomes debilitating or I have pain from some other issue. I might have walked a bit more than usual, or tried some gardening or some other activity. With pmr, any extra activity can cause lots of muscle pain. If I take it before bedtime it relaxes my muscles and helps me get to sleep. I hope you can look after yourself a bit with all your other concerns. It’s worth a try.

I have not tried the oil or capsules Arvine so can't help you with that. Just wanted to say so sorry that you have had to go through so much heartache in such a short space of time. I think that the fact that you have managed a real reduction in your steroid dose during that time is amazing. So pleased for you. Hope that you will find other ways to help you relax a little and help you sleep xxx

Hi Arvine. I'm sorry you are having such a poor time as a family. I pray that your trials and tribulations are soon over. I have tried the CBD oil drops and the oil capsules. First of all I suggest you make sure you get your supply from a reputable source. The drops I got tasted like a strong raw cabbage stem, a little bitter but bearable and quickly washed away with a drink. The capsules are about 1 inch in length and not that easy to swallow. Both forms come in various strengths, but I can't remember which strength i went for, only that it was a middle strength. I didn't notice much of, if any difference to begin with, but by the time I had been taking them for a month I noticed a slight reduction in the stiffness and a slight increase in the amount of sleep I was getting, from 2 to 2 1/2 hours in one hit. I have also found that the sleep I have been getting seems to be of a better quality of late. I have never slept well ever since my second child was born. He didn't sleep more than 10 minutes here and 10 minutes there until he was 9 months old.

All that being said I do think that at the moment it is overpriced for the little relief it gave me and will not be buying any more, at least not until it has been tested more. I can liken the smell of the drops to mildly rotting vegetable matter.

So sorry about your struggles. Sending hugs and prayers.

Yes, I have. diagnosed with PMR in December 17. Tapered to 15 mg. April-May started having headaches at 3 - 4 am wake up could not go back to sleep. June I started taking 15 mg CBD (no THC) before going to bed. Headaches vanished, I continue to take the 15 mg CBD.

From what I've read, CBD helps some, not all.

Good luck!

3 CDB drops under the tongue is bitter while absorbing, but puts me into deeper sleep and eases my achiness.

I can’t help with CBD but I can tell you various essential oils help with those issues. I personally benefit from them and know others who do as well.

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