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    • #17258
      Bailey Vincent
      Keymaster

      I’ll be honest: I have not always been a big fan of CBD. I thought it “didn’t work” (minimal difference, if any), and is possibly a placebo effect, and so on and so on.

      I tried a brand awhile back that was sent to me and realized – at the very end when it was basically gone- that I wasn’t using a large enough dose to feel any effects that might help in falling asleep. Perhaps that was my problem all along?

      Even so, is it worth paying $100+ for a tincture of quality stuff [like that sent to me which finally worked] just to feel a “maybe slightly better” melatonin? I don’t know… but sometimes I think maybe.

      I can’t afford more, but I do have cbd-curiosity now for sure.

      What has been your experience (if any) with cbd and what do you use it for? 

      Has it helped you? What brand or formula do you prefer? All tips welcome and appreciated!

       

      PS. Of note, I tried marinol when prescribed it by my CF clinic for appetite, and know it has nominal-to-no thc, but still had a negative reaction. I personally don’t use thc, but know some cbd incorporates! What works for you? 

    • #17264
      Jenny Livingston
      Keymaster

      I was just having a conversation about this, literally minutes before seeing this post! I have absolutely no experience with CBD or cannabis, although I have several friends who openly share their experiences with me. Here’s what I gather – CBD seems to not be as effective as cannabis in it’s various forms. Something about that THC not only gives the “high” but seems to have a very therapeutic effect as well. This, again, is coming from someone with no personal experience. I would love to hear others share their thoughts on this here.

      Can I ask what negative effects you’ve experienced?

    • #17270
      Steff
      Participant

      Hi , Can you use CBD oil with Trikafta ? I used it for a few years before Trikafta and got great benefits with less inflammation, sleep and being more relaxed. Would like to take it again but I’m unsure ?

      • #17273
        Jenny Livingston
        Keymaster

        Steff, do you feel comfortable talking with your doctor about this? That would definitely be my suggestion. I think you are smart to be cautious about this.

    • #17284
      Judy Moreland
      Participant

      I tried marinol, which my CF doctor prescribed in 2011 for weight gain.  I wasn’t on it long.  My brother with Alzheimer’s (he was 67 at the time and died in 2019) was living in assisted living, and I had to take him to his many appointments.  I didn’t take it for very long because I was worried about driving him around while taking marinol.  I have never regretted coming off it because I would have blamed myself if we got in an accident.  I worried that it altered my mind a bit, but of course, the fear about that could have caused the worry.

       

      • #17306
        Steff
        Participant

        Hi Jenny , yes I could talk about this with my Doctor. I do feel I can do with out it as I have gained so much with Trikafta . It would of been a extra aid to help with sleep etc. Thanks for your reply

    • #17307
      Paul met Debbie
      Participant

      I have read that CBD, like grapefruit, uses the same liver enzyme (CYP450) that is needed to break down Trikafta in the body. So there is a chance that by using CBD the serum level of Trikafta will be higher than normal.

      I don’t know of any research that explains how strong these effects of CBD are and/or how much CBD is needed to produce this effect.

    • #17315
      Steff
      Participant

      Hi Bailey, thanks for your reply. If you find out any more info please post . Thanks Steff

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