Using CBD Oil For IPF

[peppermom]

Hi Charlene.  I have tried it. It made me feel very peaceful and relaxed.  However, my friend who is in the medical field, has stated that I need my lungs to be tough and also ready to fight – not relaxed.  Hope you have better luck with it. As I said, I did feel really good, but coughed a lot and was somewhat short of breath and puffing more.  So, guess I can’t use it.

 

[Charlene Marshall]

Hi Joyce,

Thank you for sharing your experience with CBD oil. I find it so interesting that each person’s experience with it is so different than the next!

Someone suggested I take it before bed to help me relax and sleep (I am having major issues with sleeping right now) although I do worry about what your friend said. Especially when I am asleep, I don’t want my lungs to become too relaxed and potentially not intake as much oxygen. So, I think if I did try this it wouldn’t be at night but instead during the day and while someone else is around as well. I have heard another forum member say they coughed significantly as well, which is also a side effect that I really don’t want to endure. This hurts my chest and chest muscles when I go into coughing fits.

Thanks again for sharing and I hope you are doing well.

Warm regards,
Charlene.

[dianne]

May i ask how do you get CBD oil?  I am very interested in trying it for my fibromyalgia and osteo-arthritis pain.  Can this be purchased on-line?

Thank you,

Dianne

[Charlene Marshall]

Hi Dianne,

This is an excellent question and unfortunately not one I can answer yet, as I’ve never obtained CBD oil for the management of my IPF-related symptoms, it is just something I am considering. With the legalization of medicinal marijuana here in Canada as of July 1st, I would suspect CBD oil will become available at certain pharmacies but I am not sure. Truth be told, if I choose to proceed with this I’ll likely talk to my doctor about it as we have a good relationship and he wouldn’t be opposed to my exploring this option for pain management I don’t think.

I suspect you probably could get it online but I would certainly be wary of where it comes from, and ensuring it is someone or a credible site you can trust. Sorry that I can’t share any more details than that, but if I do find out more I will report back and let you know. Perhaps another forum member will come forward and share where they obtained theirs in the meantime?

Take care and thanks for joining us!
Charlene.

[margaux-espinosa]

Hi, I am one of the people who used the CBD as a medicine for my illness I’ve been suffering MS for about 5 months now and I know it’s not that kind of illness that everybody wants to have and unfortunately I’m one of those who has this. One of my friends told me to try this CBD and she also gives me some advice on how I will use this. Then I read this article that CBD can use as a medicine https://www.greenmed.io/blog/declares-cbd-safe-medical-use/

[lorin]

My husband was curious about CBD and other canibis products for managing the anxiety that has become a regular thing for him since his IPF diagnosis. Last fall we attended a transplant seminar at UCLA where a pharmacist spoke to this very issue. She said they strongly advise against canibis use because the affect or interaction with meds has not been investigated at all. So until that happens, it is their position that it should not be used. I’ve also read that the use of any canibis based products could disqualify you from getting a transplant. Based on that, for now he’s going to pass on it…for now.

[chuck-landon]

Dianne, I began experimenting with CBD oil about two weeks ago and I want to believe that it is beneficial to our overall health and feeling of well being.  Turns out this is a great week to take advantage of a sale I found here: https://discovercbd.com/

I ordered ten of the 25% gold 1g syringes – got 30% off plus 10% off for subscribing to their email.  Net cost was $184.13 which is the best price I’ve found anywhere. (typically cost around $30 to $45 per syringe) also I’ve found that this is the easiest and least complicated way to ingest the oil (none is wasted or spilled etc.)

Trying .1g (about 3 drops) sublingual once a day or half that twice a day.

It’s worth a shot.  BTW did you see where the FDA has approved CBD and the World Health Organization is discussing it’s approval?  These are exciting developments.

[Charlene Marshall]

Hi Chuck,

Thank you so much for sharing this resource for myself, Dianne and others to investigate. I’m really grateful when other members have come across a good resource that would benefit others. I appreciate your taking the time to share.

Have you found that your use of CBD oil has been beneficial in alleviating some of your IPF-related symptoms? I agree with you, I think it is certainly worth a shot. It is interesting to hear as well about the FDA approval of this as well as the WHO having the approval potentially on the horizon as well.

Thanks again for sharing and wishing you the best!

Charlene.

[dianne]

Dear Chuck and Charlene, Thank you.  Chuck I have gone ahead and ordered the exact same order as you.  I will update you at a later date as to how effective it was for me.  I so appreciate you sharing this information with me.  I have Pulmonary Fibrosis, Fibromyalgia and Osteo-Arthritis so pain relief would be such a blessing to me.  I am especially interested as it is a more organic approach to pain management.  Once again thanks, Dianne

[Charlene Marshall]

Hi Dianne,

Thanks for letting both Chuck and I know that you have ordered the same thing. If you’re comfortable, do you mind sharing with me how you make out with it? I’m curious to hear as more and more I am hearing positive experiences that people are having with CBD oil. Even a few members of a group I am part of at the hospital said this has helped them with pain management, so I certainly hope it gives you some relief Dianne. Will be thinking of you and hoping it works! I look forward to hearing 🙂

Warm regards,
Charlene.

[peppermom]

Hi Charlene,  I have enjoyed reading your and other participants views re CBD oil.  I was told to take 20 drops under my tongue twice a day and that is what I did.  As I mentioned I did find it helped me, but was told to not use it as my lungs may become too relaxed.  I am wondering if I was taking too much to begin with?  I read that Chuck was going to try 1 gram or just one or two drops.  I maybe should have tried a smaller dose???  Wonder???  Anyway, let us know Chuck how you make out with it and if it does indeed help you. I am willing to try it again. It does seem to help many so possibly I started with too big a dose at first. Who knows.

[Charlene Marshall]

Hi Joyce,

Thanks for sharing – I have also found others’ experiences helpful and think I am a bit more inclined to try CBD oil after reading their comments. I know you mentioned the relaxed breathing before, which was one of my hesitations so I do appreciate hearing this experience as well. Maybe the initial dose of 20 drops was too much as you say and having a smaller dose to begin with is something worth trying again?

I hope Chuck and Dianne share their experiences as well and let us know how it goes for them. If I do end up trying it, I will also let you know. Right now, my biggest hope for it is to relieve pain in my joints and the muscles in my back and chest from this pesky cough!

Take care,
Charlene.

[peppermom]

Yes, do keep in touch and let me know how it goes for you.  I just did a Public Speaking bit for Manitoba Lung Assoc. at their Respiratory Conference for Health Providers.  It was on ‘A patient’s words on how this disease has impacted their life.’   I really enjoyed doing it and certainly enjoyed all the other speakers at the Conference also.  Apparently I did a good job so they said. Hope the CBD Oil helps with the pain you are having.

 

 

[Charlene Marshall]

Hi Joyce,

Wow, that sounds amazing – way to go! Thank you for doing this, as any opportunity our voices as patients are heard from medical professionals is a bonus I believe. Did your team ask you to do this for the conference? Such a great opportunity 🙂

I went to UCLA in February to talk a bit about this disease for young adults, and I loved meeting other patient advocates while there. These types of engagements I find really lift my spirits, and I hope this was the case for you as well.

I will keep you posted re: the CBD oil for sure. I haven’t obtained it yet, but am leaning more towards trying it than not. I will let you know.

I hope you had a great weekend and that this note finds you doing well.

Warmly,
Charlene.

[dianne]

Hi All,

Received my CBD oil today, trying to work out dosage, the company I purchased from that Chuck recommended Discover CBD oil is great to deal with and gladly answers all your questions.  I will keep you updated.

[Charlene Marshall]

Hi Dianne,

Great, I’m glad you received it successfully. Have you given it a try yet? I’ll keep that in mind that the place Chuck recommended has been good to deal with. I think this is important as many of us still have questions before we’re comfortable trying it out. I look forward to hearing how it goes for you.

Regards,

Charlene.

[dianne]

Hi All, it has been 5 days since I started using the CBD oil.  Honestly I have not noticed that much of a difference in pain.  I still am hanging on to the hope that I need to be on it at least 2 weeks more before I make my decision.  The other factor is getting the dosage correct which I am still working on.  Perhaps my expectations were too high?  Regardless I will follow up with you again to see if there have been any changes.  I am still appreciative to Chuck for suggesting this supplier I know this is a high quality product. (No pun intended)  Till then be well breath well.

[Charlene Marshall]

Hi Dianne,

Thanks for getting back in touch with us, and letting us know how it is going. Hmm.. yes, I wonder if it does need to be the full 14 days before you notice a difference in pain / symptom management. Has it made any difference for you in your sleep, would you say? This is one of the things I’d be considering it for.

Yes, I’ve heard dosing make such a difference, and I think it was Joyce who said she struggled with this a bit the first time she tried CBD oil as well. Goodluck with this, and if there is a trick you find to managing this, please let us know. I’m eager to hear if you find it helpful after a few more days…

Hope you’re doing well otherwise Dianne. Thanks for connecting 🙂

Warm regards,
Charlene.

[dianne]

Hi Charlene, sorry I have not noticed any changes at all, with pain, sleep, or anxiety.  I will give it another week because it cost a ot of money.  I have taken a large dose to see if that made a difference, it didn’t.?

[Charlene Marshall]

Ah bummer, I am so sorry to hear this Dianne – I was really hoping it would provide you with some relief!
I wonder if the company could offer you some advice and/or suggestions on how it might be more effective, if you called and explained the situation? Maybe others have had a similar experience as you and there is something they could suggest? Worth a try maybe, if you’d be comfortable connecting with the company. I think its the least they could do, seeing as you say, it costs a lot of money.

Hang in there, and I do hope it starts working for you soon!

Take care & thinking of you.
Charlene.

[timothy-middleton]

I don’t understand why doctors want to prescribe us these highly addictive medicines when they know all we want is our pain relieved and some sleep. Why do I need to take an addictive substance for that, I take probably 23 pills a day. They only offered me the codeine cough syrup that you barely get because everyone is abusing it. I need to try something different. I see people saying their lungs can get too relaxed but I my doctor told me to make sure my lungs rest at night and that’s what the supplemental O2 is for so they don’t have to work as hard at night as they do during the day becuase I still work full time and my lung capacity is 31%.

[Charlene Marshall]

Hi Timothy,

Your questions are good ones, and I often ask (and really advocate) for clarification on why I am on certain pain medications. I know a close friend of mine who is post his second double lung transplant, and he became addicted to morphine, and really struggled being weaned off it… not only physically but mentally as well! Usually on pain medications, I don’t find it helps me sleep so it is like a catch-22: pain is under control, but my sleep isn’t improved. I don’t like having to juggle that and think your question about why some of these meds are prescribed are good ones for sure.

It’s worth an exploration of CBD oil I’d think? If I remember correctly, the person who mentioned her lungs become too relaxed with CBD oil, may have not taken the right dose for her. Therefore, this might not be a symptom for everyone. Do you use other sleep aids to try and help improve your sleep, combined with a less addictive pain medication, like tylonal or benedryl? I know this isn’t for everyone, and is dependent on each person’s pain tolerance, just thought I’d ask and see.

Hope you find some relief soon!
Charlene.

[george-clayton]

I grew up in the 60s. What would you like to know about marijuana LOL 🙂

Just a short synopsis of my experience with it.

I live in NH where medical MJ is legal and I have been using it for the past year for an unrelated illness, with excellent result on my RA, anxiety, sleep, muscle aches, lung pain and PF. I had an appointment yesterday with my Pulmo and he showed me a side by side comparison of my lungs a year and a half ago and now, Great news is my infusion therapy (Rituxin) appears to be working there has been no progression of any significance. So I am also tolerating the MJ well with good results.

Two significant components in MJ are THC and CBD. THC is the psychoactive component and CBD  can help with pain and inflammation. I have tried CBD alone with no noticeable results. When I use both THC and CBD together in the MJ the results are outstanding. I am not advocating for MJ but for the relief it provides.

With MJ you can still get the benefits without getting stoned. Propper dosage helps moderate. Of significant importance is the method you use to ingest it. With PF its obviously not a good idea to smoke it as the cure would be worse than the disease. I tried vaping as there is no combustion in that process but my lungs couldn’t tolerate it either.  there are many other methods of ingesting. I prefer sublingual drops under my tongue or the ever favorite CHOCOLATE CHIP COOOOOKIES WITH HAGENDAZ ICE CREAM!!

My results caused my muscle and joint pain to quietly evaporate and all of a sudden you realize Wow it disappeared. My lung pain and anxiety both disappear.

With the changes in public opinion on medical MJ, hopefully, it will be accessible to everyone.

[Charlene Marshall]

Hi George,

Thank you so much for writing and sharing your experience with medical marijuana. You’re certainly not the only person who I’ve heard from that says they’re having good results with it, or just MJ in general. It’s interesting to learn that it is helping your primary illness (the unrelated one that you referenced) as well as secondary symptoms, this is excellent news for you 🙂

May I ask: do you generally take it at nighttime to help with sleep and anxiety? I suspect this would help me, as I wrote to Timothy, that or just the CBD oil option. I appreciate your clarification on THC and CBD as well, I’d read into the differences but your explanation is clear and concise! The MJ with THC in it, would not be considered the medicinal stuff, correct? Just thinking that for others who want to try this for pain relief (seeing as I’ve heard a few folks, including yourself now, say that CBD oil doesn’t work alone), getting MJ with THC might not be as easy as the medicinal stuff, correct? Can you tell this isn’t an area I am familiar with haha…

I am so curious to try it as pain relief!!! It would be wonderful to have my joint and muscle pain disappear, even temporarily!!!

Glad it has been so helpful for you and yes, I too hope that the changes in legalizing it makes it an option for more folks to at least try for pain relief. Thanks again for your post, very informative 🙂

Regards,
Charlene.

[timothy-middleton]

@GeorgeClayton, very encouraging! I also plan to take edibles or the liquid form. There needs to be an open mind approach from our doctors. They are hypocrites st times because they need a million studies for anything related to MJ but will prescribe pharmaceuticals off label meaning these medicines haven’t been proven to do what they’re prescribing them to you for

 

[Charlene Marshall]

Well said Timothy!
I think the hardest part for trying the options of MJ with THC, which as George mentioned is most beneficial, for me would be figuring out how to obtain it….

Let me know if you do try and it how it works for your symptom management Timothy! Goodluck!
Charlene.

[george-clayton]

Hi Charlene

I do hope this information can help others.

The CBD oil offered online is typically from the hemp plant, a cousin of MJ but not from MJ. That is why it can be sold online without any problems. Medical MJ contains both CBD as well as THC. I have heard that CBD can help but didn’t for me. So I use the medical MJ that has both.

I usually take it around 5 PM and it last for about 5 hours after which the anti anxiety and gentle sleep continues into the night. A key as I mentioned is dose management beginning very low gradually increasing until you are comfortable. It takes about 1 1/2 hrs to take full effect.

It will definatly help to significantly reduce you pain and other symptoms. I am happy to answer any questions you or others may have.

Breath Deep and God Bless

[Charlene Marshall]

Hi George,

Thank you so much for sharing all of your knowledge with us regarding this subject. Indeed I have found it helpful, and I am confident that others have or will as well!

I didn’t understand how some CBD oil was available so readily online, when purchasing MJ is oftentimes so difficult. I suspected that somehow the quality may be a bit different for it to be able to be purchased online. I suppose everyone’s response to CBD is a little different, but I’m glad to hear your experience of needing the MJ with both CBD and THC in it. Is it the MJ with the THC that is illegal to purchase (for now)? Canadian laws are changing and legalizing marijuana on July 1st of this year.

Do you find any changes with your breathing in particular when you take it? Since I am most often home on my own, I think I’d prefer to take it when someone else is around, just in case it does impact my breathing. That being said, it probably wouldn’t if I started with a small dose and gradually increased. I definitely would like it to help with my sleep and pain though!

Thank you for being so open to answering our questions…. wishing you well.

Warmest regards,
Charlene.

[george-clayton]

Hi Tim

Or they will give you oxycodone. With the rapid pace of test results showing its application to a wide range of illnesses, I think it will positively impact far more than we can imagine.

[Charlene Marshall]

Hi George,

Unfortunately I have been prescribed oxycodone on more than one occasion for pain management, and the side effects of this med are difficult and unpleasant to deal with. Talk about a potentially addicting medication!

[dianne]

So glad to read this.  I am 63 yrs old and am have cookies with mj, I take CBD 2 x a day.  Still working on dosage so only feel the benefit of pain relief but not stoned.  Have done a ot of research and opt for more natural, organic medicine than pharmaceuicals.  Thanks for sharing your experience.

[Charlene Marshall]

Hi Dianne,

Does this mean that you’ve sorted out the dosage enough to notice a difference in your pain management? I hope so, as I know you were struggling with this before. If so, that is great news 🙂

[george-clayton]

Its amazing they continue to prescribe drugs that are proven to be very detrimental but MJ continues on schedule 1 claiming it has no beneficial value. With the changes in state laws they are discovering it has amazing properties but some Drs are very pro and others say we dont know enough yet. Thats because  until now they have been unable to track its effectiveness.

Im not sure if there is a pain level it cant help with, but I have RA and PF and it knocks it down VERY well and is an anti-inflammatory.

[Charlene Marshall]

This is so good to hear George, as I know many people have RA associated with the IPF, or even Lupus. I would imagine as an anti-inflammatory response too, that it would be helpful for these diseases also. I still haven’t done a brief literature search to see the benefits of medial marijuana or even CBD oil to respiratory disorders, and am interested in doing this just for my own curiosity. I think I’ll add this to my task list for the weekend, and I’ll share any findings of particular interest. That said, hearing others’ experiences with it is almost more beneficial for me, as I find I am a lot more comfortable in exploring or trying something based on other patients’ experiences.

Thanks again George!
Charlene.

[dianne]

I still have not had any pain relief from CBD oil, but i spent alot of money on it, I will continue to take it because I believe it is beneficial for my body in other ways.

[Charlene Marshall]

Hi Dianne,

I am so sorry to hear that you still haven’t gotten any relief from your pain, despite the CBD oil. What a bummer for you – dealing with pain on a long-term basis is so physically and emotionally exhausting. I had a bit of a meltdown at work the other day and the only thing I could “chalk it upto”, meaning I had no other reason to be upset, was that I was tired of dealing with pain on a regular basis! I wish for you that the CBD oil was helpful.

Did you read George’s helpful explanation above about CBD and THC? I didn’t know much of the difference, but George did mention that CBD hasn’t been overly helpful for him but the medical marijuana with THC has been for his pain. Would this be something you’d try? Perhaps it could be tried in collaboration with the CBD oil, as I know you want to use it given the money paid for it. Just something to consider maybe?

Take care and thanks, as always, for getting in touch.

Regards,
Charlene.

[peppermom]

You are saying it has helped your IPF? I was told my kungs would relaxed and they needed to be ready to fight the PF. Was that not really correct? If not I’ll go back on it.

[george-clayton]

Hi Joyce

I’m not a Dr so I can only tell you my experience and the information I’ve gathered.

It seems strange that while ILD is a scarring fibrosis disease and you were told it would be bad for your lungs to relax. If that were the case we shouldn’t take anti-anxiety meds or treat depression or inflammation as that also helps to relax. We wouldn’t treat the symptoms of ILD for fear of having it ease the stress. No more O2 either

Obviously, our lungs work harder to get O2 than healthy lungs plus we exercise to the extent possible as well as pulmonary exercises as compared to someone who doesn’t have ILD. I know that my lungs continue to work hard and I welcome the respite that the MJ provides.

Wish you the very best in finding what works best for you.

 

[peppermom]

I know George. Thanks for the info. Even my Dr. wanted me to cut back on my depression and anti-anxiety meds. I did cut back, but it didn’t help my breathing any, also my anxiety became worse. Think I’ll give the CBD oil another try and see if it helps, or I’ll go back to the former med dose. I know my lungs are working hard now anyway.

[Charlene Marshall]

Hi Joyce,

Thanks for re-connecting about this issue, and I hope if you do try it again that you find some benefit from it. If you’re comfortable sharing, would you mind letting us know how it goes? I like hearing several different experiences, although I do think I am going to give it a try and will ‘report’ back on my own experience as well.

I hope you’re doing well!
Charlene.

[peppermom]

Ok Charlene will keep you posted. My body isn’t doing great. I am having A Fib problems now. Don’t have High blood pressure but was put on the pills. The rate still fluctuates a lot but recovers more quickly. Takes 2 wks I am t8ld for themnto really work well…so far its only been 4 days.

[Charlene Marshall]

Thanks Joyce for letting us know you’ll follow up when you can.

Oh no! I am so sorry to hear of your A Fib problems, when did this start? I hope it is nothing too serious or an indication of another illness/ailment for you. Sometimes I know heart troubles can be associated with PF due to the heart overworking and compensating for the work our lungs are not doing. Do they have any suspicion the two are linked for you?

I’ll be sending you good thoughts and am hopeful that your medications can adjust and resolve the A Fib issues. That must be really scary!

I am thinking of you Joyce. Hang in there! <3

Charlene.

[delores-overby]

My husband order me the CBD oil. I didn’t see any improvement in my condition. He paid $265 for the oil.

[Charlene Marshall]

Hi Delores,

So sorry to hear of your experience with CBD oil being ineffective for you. $265 can seem like a reasonable price IF it brings relief, but sure feels pricey when you didn’t see any improvement in your condition. Such a bummer! Did you try different doses too? I know this was something another member of our forums had to try out, and I believe she ended up giving the CBD oil another chance.

Also, if you’re interested, be sure to read the thread from a few more educated members of our forum about CBD and THC oils as more effective relief. Hope the latter option might work a bit better for you and sorry again to hear the CBD oil didn’t… I know that can be frustrating!

Hang in there and feel free to connect any time!
Kind regards,
Charlene.

[dianne]

Have faithfully taken CBD oil for weeks…..NOTHING CHANGED?  Started CO, felt like something might work, tried various doses, still fairly new at it.  STILL HAVE CHRONIC PAIN.  Driving myself crazy trying to figure this amount dosage out.  I will continue  as in all fairness it has only been a few weeks.  Thanks, Dianne

[Charlene Marshall]

Hi Dianne,

I’m so glad you connected back with us, I’ve been wondering how you’re doing although I wish you could share that the CBD oil was helping you. That must be so frustrating for you, and I’m sorry results aren’t better. What a bummer! Can I ask what the “CO” is that you started? I should know this but my mind is drawing a blank…if it is another treatment option for you, I do hope that is helps alleviate some of your pain and discomfort. Have been thinking of you, and hope you find some relief soon my friend.

Kind regards,
Charlene.

[cortez-distefano]

 

This is a very nice article. Cbd is truly the next best thing in medical advancement.  Why is it very popular? This is primarily because of it’s health benefits  and effectiveness it can offer. I’ve watch a lot of video about how CBD works it’s magic  in a snap. Marijuana  strains can give you different effect like http://www.ilovegrowingmarijuana.com/amnesia-haze/.

[Charlene Marshall]

Hi Cortez,

Thanks for your reply and contributing to this thread. Yes, CBD is definitely a popular topic right now in terms of medical advancements, and symptom relief for a number of chronic illnesses, I definitely agree with you. I’ll take a look at the link you left, and I am sure others who are interested in the use of CBD oil will as well. Thanks for sharing it and I hope you’re keeping well!

Regards,
Charlene.