[andybParticipant]

Hi all,

New to the forum.

I was initially diagnosed with MM in late 2015, but relapsed for the 2nd time earlier this year.
Started IRD treatment in August and I’m taking 20mg Dex once a week, at breakfast time and having a difficult time
trying to sleep that same evening.

I accept that one sleepless night a week isn’t the end of the world,
its usually 3 or 4am in the morning before I can drop off, even winding down with reading and a late antihistamine.

I expect many patients are the same but I just wanted what others have found worked for them.

Grateful for any feedback.

[rabbitParticipant]

Hi.

I have a suggestion, although I discovered this while in remission (so the weekly dexamethason had become monthly at that stage as part of my maintenance).

CBD oil has helped me enormously with sleep. I did some reading up: Holland & Barrett sell high quality CBD oil. You squirt a few drops under the tongue from a small bottle.

I know this sounds like an advert, but I have nothing to gain from advertising. This is simply my experience.

Regards
Rabbit

[andybParticipant]

Hi and thanks for the suggestion. Good to hear its worked for you and it’s something I’ll try.

Appreciate your help.

regards

Andy

[cjleedsParticipant]

Hello, I take 40mg of dexamethasone once a week as part of DRd treatment. I take it with breakfast 3 weeks out of 4 . My oncology clinic which administers the daratumumab injection and zometa infusion 1 week in 4 has recently moved my clinic time from mid morning (11am) to 2:30 pm. As I have to take the dexamethasone with paracetamol and an antihistamine 1-3 hours before this it has moved my dexamethasone time to post lunchtime. However the effect of the medication hasn’t changed my sleep pattern much . That evening /night is usually 2am bedtime,asleep around 3:30/4am awake 6/7am.This improves over the next couple of days to be replaced by dexamethasone down tiredness. I often fall asleep in my armchair after lunch for the next day or so.
Regards
Colin

[cjleedsParticipant]

Rabbit,
That seems like something to try in my situation too, so it’s a thank you from me as well
Colin

[cjleedsParticipant]

Rabbit ,I would welcome any advice as to brand of CBD oil from H&B. I notice they stock different brands with a range of prices. I understand that recommending a brand in the higher price range is difficult and I personally would find it so . So no pressure if you would rather not but I would prefer take a punt on a brand which works for you as opposed to a random pick.
regards
colin

[rabbitParticipant]

Hi Andy and Colin,

I take “Love Hemp” CBD oil drops.

https://www.hollandandbarrett.com/shop/product/love-hemp-300mg-1-cbd-oil-drops-30ml-wild-cherry-flavour-6100000997

(judging by the weird spam messages that appear on this forum, I doubt that the adminstraters would mind mention of a commercial product which is actually relevant to myeloma patients!)

Especially as it costs a few pounds, I suggest buying the smallest amount to try it out (normally £14.99).

Again, I gain nothing – except the satisfaction of trying to help other myeloma patients – from sharing my experience.

Regards
Rabbit

[cjleedsParticipant]

Much appreciated and as there is a brand they stock at over £50 a bottle no one could accuse you of pushing their stock price up
Again thank you . The best thing about this forum apart from realising you are not alone is the great tips people share about things that work for them and are often worth trying even though myeloma is such a diverse disease
Colin

[andybParticipant]

Thanks Colin and Rabbit for your feedback.

Wishing you both the best with your treatment.

Regards

Andy

[Author]

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