LDN Video Interviews and Presentations

Rebecca Mass-Krajewski NP, talks about the trifecta of HEDS, POTS, MCAS from LDN Research Trust on Vimeo.

Claudia talks about MCAS and POTS from LDN Research Trust on Vimeo.

Laura from the US shares her LDN, SIBO and MCAS journey with all the struggles that went along the way until she had better quality of life.

Michelle and her husband Matt from the US share with us her quest of many years to finally get an MCAS diagnosis and then to have the correct treatment to help her, which included LDN.

Alissa shares her personal journey dealing with symptoms, diagnosis, and treatment of MCAS and POTS. She describes the frustration of being initially misdiagnosed and not being taken seriously by medical professionals. However, she expresses hope and optimism as she discusses finding stability and improvement in her symptoms after receiving proper diagnosis and treatment. Additionally, she highlights the documentary project to raise awareness about conditions such as MCAS and POTS, emphasizing the importance of increasing understanding and recognition of these health challenges.

Belita from the USA is a retired MD, she shares her amazing LDN Story for Chronic Pain 

Erin Panian, PharmD, BCPS - LDN Radio Show November 2023 (LDN; low dose naltrexone)

Have you always wanted to be a pharmacist? 

I wanted to be a doctor first and foremost but when I got into college, I did an internship in the ER and figured out quickly that I tend to pass out when there's blood.  It wasn't the right path for me.
A non-hands-on approach would be a little bit better. My mom was a pharmacist and I shadowed her a few times. I thought it was neat, the knowledge of medications and what they were doing and I thought it was a fun field to get into. So, that's when I went to pharmacy school. I had a compounding rotation in my sixth year of pharmacy school. I just thought it was so fun. It's something new every day.
We get to figure out problems. Helping somebody figure something out was a lot of fun for me. To this day, it's still something I enjoy the most about the job. We always get the patients who have trouble finding help anywhere else, we're always able to try and help them. It's a very rewarding and fun job. I've been doing it now for 17 years.
Could you explain to our listeners what it is you do in pharmacy school and how many years? I know you said in your sixth year I believe seven isn't it now?
When I went to school it was six years, it's seven now. Each school is a little bit different. When I went to a pharmacy school you could start from day one and just finish, whereas a lot of other places have you do like a pre-pharm program. You might do two or four years in pre-pharm and then actually enter pharmacy school for three or four years. Mine was six years and then I did a residency training afterwards. That was at the VA. I switched over to compounding but did some more residency training after school. Some people do a year or two. I did one year and then I just entered straight into compounding from there.

What kind of things do you learn in pharmacy school? Walk us through it so we can understand what training a pharmacist has to have to become a compounding pharmacist.

It's not a lot of compounding. You get a class on compounding. One class out of those six or seven years and you learn the basics. I think the pharmacy school here has a couple of newer machines and technology that we use currently, but back when I went to school it was all very antiquated in terms of what they taught you for compounding because they didn't teach you much. It was still using an old ointment slab, a very sort of old-school Pharmacy. I always talk about compounding being an old-school Pharmacy, but with new inventions and fancier machines to help us make it more accurate, and a little faster. A lot of pharmacy school is going through all these other medications that you would see anywhere, whether it be at the hospital, Walgreens, or  CVS. It’s going through different medical conditions and learning about those, learning how the drugs work for those conditions, learning how the drugs work in the body and how they break down and get to the different tissue levels. It doesn't prepare you fully for compounding.

I always say when somebody comes to work for us it's about 75% on-the-job training because with compounding there's a lot of stuff out there that people haven't done before. A lot of what I depend on is kind of a network of compounders that you can communicate with.
I'm part of a list of Compounders from across the world and people would send an email out to everybody:” I have a patient that needs this, I can't find any data on it. What have people done? “
You kind of take your background information of conditions and different disease states, then you take your information of the drugs that you're able to utilize or the bulk chemical powders that you're able to get. Through that information, sometimes you have to figure out a unique way to give the medication to the patient or a unique dosage. It's a lot of on-the-job training and it's one of those jobs that the longer you do it the better you are. You've done a lot more. As experience goes along you get used to some of the questions, a little bit faster at being able to figure out some of the problems.

What about drug interactions? I mean that must be part of your course.

It definitely is, and it's one of the trickier parts, to be honest. As a cash-only pharmacy, we do have to make sure to take a good medication history with the patients. With people that bill Insurance, a lot of times insurance does that drug utilization review and that interaction review for you automatically.  So, when you bill the insurance company it will see even if the patient didn't get that drug at your pharmacy, it will see they got it at another pharmacy and it will alert you to the fact that it's going to interact.  Here, we don't have that because we're cash only and we don't bill insurance on that, but we're able to take a thorough medication history of the patients and there's a lot of stuff that are your common interactors that will interact with a lot of drugs.  So, anytime we see that we always make sure to be even more thorough and make sure that they give us everything they're on so we know to be able to check through those interactions and make sure it's not something that's not going to work out for the patient. 
In your pharmacy, just go through the different options that a patient can have for LDN.  
Our most common form is tablets because a lot of times patients are going to begin on a lower dose and then work up.  Tablets make it very convenient because you can split them in half.   I even have some patients that split them in quarters. Therefore, they can start with one tablet or a half tablet and then increase up as gradually as they need to, to reach their target dose.  I do find the tablets are the easiest and they are the most common with us. We also do capsules.  The only downfall with that is you can't split them. You're kind of stuck with doing one or two or three multiples or something like that. 
We can make different liquids. Liquids are nice in terms of being able to dose them because with liquids the options are endless.  If you have a 1 milligram per 1 milliliter, you could use 1 mil to get the 1 milligram dose.  If you wanted to start at 0.1 milligrams, you'd only have to use 0.1 ml. If you wanted to go up to a target dose of 4.5 then you could go up to 4.5 MLS.  You could do all your doses with just one liquid.  The only downfall is the taste.  It's not the worst-tasting medicine.  It's not the best-tasting medicine. Everybody is different in their palatability tolerances.  You've got excipients. If somebody is sensitive to the excipients. Storage it's not as convenient. Some of them are room temperature but still just keeping a liquid around can also be a little messy.  If you spill some it can be sticky. A lot of times people just prefer taking a tablet or a capsule over a liquid. We've also done cream, so any sort of topical.  We can do gels and creams. 
There is an LDN eyedrop.  That is something we were looking into providing to patients.  Being an eye drop, it comes with a little more stringent rules and testing. We do have a sterile room that we can make it in.  It's about getting the formula down and getting the testing done on it and getting that out to patients. Suppositories. I mean LDN I've seen done in almost every single dosage form we have available. We've done a sublingual, something that you can dissolve underneath your tongue.  Some patients get some GI side effects from Naltrexone so the sublingual dosing under the tongue is a good way to help mitigate those side effects.

What about fillers that you use in your preparations? 

Our most common filler is cellulose.  We do have some patients that are allergic to cellulose and from there if they need something else done, we work with them.  Generally, if just a lone script comes across, we're going to default to cellulose unless the doctor or the patient has alerted us that the patient needs to be worked with and they don't want a cellulose filler. Many times, we'll work with the patient and see what they want or need.  Whether it be with a capsule, the possibilities are pretty much endless.  We can choose something of their liking. 
Probably the second most common filler would be rice flour.  We see that a lot, but we can also do tapioca.  I've done inulin before, crushed salt, arrowroot, all sorts of different fillers, oat flour, the possibilities are endless with capsules. Fillers for liquids get a little trickier. Naltrexone is water soluble so theoretically you can just put the Naltrexone in water and dispense it to the patient. However, when it's just in water without a preservative, it can only be good for 14 days and it has to be refrigerated.  Not only do they have to get it refilled every 14 days, but they have to pay for it every 14 days. That can get a little cost-prohibitive, considering a lot of times we're dispensing up to three months for a patient and not just 14 days at a time. 
Fillers for non-water liquids. We can do oil, if they're tolerant of different oils. Again, we just come across different palatability and tolerances.  Some people just don't like that oil feel. Another liquid's available that has data on it and it's a little bit better mouth feel, but it does have different excipients in it that people may not be able to tolerate. 
So, there are lots of different options that we can work with patients to try to figure out what's going to work best with them.
We want them to get the advantage of the medicine without reacting to the excipients. We want to make sure that they're going to get the advantage of the medication. 

What disease states would you say your patients are using LDN for? 

The most common we see is any sort of autoimmune disease and that can kind of run the gamut. We have some doctors that if their patient has any sort of autoimmune condition, Low Dose Naltrexone is one of the first lines for them. GI diseases, so anything from all sorts of colitis to Crohn's, IBS, IBD.  We see a lot of Naltrexone for that. Restless leg syndrome is another common one. 
Fertility. We see a lot in women's health and we have some doctors that will prescribe it for patients having trouble conceiving or having trouble keeping pregnancies, or having a lot of miscarriages.
Depression. We see it from some different psychiatrists around town. Those are probably the most common ones that we see and then you'll have random ones thrown out there because it can be used for so many different things.  Pain is another one. We see it a lot for anything from fibromyalgia to nerve pain, to CRPS (chronic regional pain syndrome). 
We do see it a lot for pain too. I think those are the main things.  That doesn't encompass everything it can be used for.
When you talk to patients, what do you tell them about LDN and the expectations? Some people are so desperate to find an answer, they want it to work on day one. 
Oh, I know. I feel so bad for them when I tell them it's probably not going to be day one, this can take several weeks to work.  You know it is working, it's not just a Band-Aid, it's helping to work in the underlying mechanisms with inflammation and modulating the immune system.  I have had some patients call me after one day and they're like:” This stuff is miraculous!” but that is not the norm. 
Normally it's going to take a little bit to work and some patients get frustrated, because like you said, they're so ready to have an answer and they want to feel better and they've already been through so many other things. Generally, I always tell patients to give it a good three-month trial at their full dose.  Don't just give the one milligram a shot for two weeks, make sure to work up if you're able to tolerate it.  Make sure to work up and then give it a good shot at the full dose. I tell them it's not going to work for everybody but it is a great option that we've seen change lives.  It's not expensive, and the side effects are minimal and mild, generally.  I always tell them it's worth a shot. Especially with some of these patients that have just been through the gamut of doctors and treatments.  Many of them do give it a shot.
We see it very successful in a lot of patients and then I have some patients that will stop it just to say, “Oh I think I can come off of it now.”  Once they are off it for a while they are like:” Oh no I can't, I need that back.  I feel much better on it.”  It kind of helps confirm and reaffirm to them that it is actually helping them.  Well, I've been taking LDN nearly 20 years and people are worried about the long-term effect of taking LDN, but LDN generally is in your system for like four hours.  So, every day you're getting like a 20-hour break.  

What do you say to people when they ask you how long can you take LDN?

It's been studied in Low Doses now for probably about 40 years.  I always tell them that we do have data over 40 years now and that it's still not showing any long-term adverse effects. The benefits of it should outweigh any potential effects. I can't even really think of any long-term effects that they've seen from patients being on it for a long time.  You may get side effects at the beginning.  Whenever you're on it you might have some of those as you're working up, however, generally, I'm not seeing any and I don't think there's any data out there on the long term that there is any harm to taking it long term. after 40 years of studies. I always refer them to the LDN Research Trust because it kind of shows all the different studies that have been done. They love that source because a lot of my patients want to look this up, they haven't heard of it before.  So they'll see the studies for themselves and see what’s all being done and see no adverse effects of it.  It helps give them a little peace of mind also. I think that does help. They are also used to, here in America, all those commercials on TV and these drugs that come up and all the side effects are like death and brain tumors. We haven't seen any of that with this over 40-plus year study. You can feel a little better with that also. 

Well, being English, when I come to America, you have a lot of commercials on your stations and there's a really nice advert promoting some drug.  Then very quickly at the end they're saying:” Possible side effects could be heart attack, stroke, cancers.” 

I know it's terrible, possible death! You think:” Why would anybody, after such a lovely advert that makes you think you’re to feel so much better, add that you could die?
I know. I know. People just remember that jingle or something that was at the beginning.

With LDN, when you said that you could potentially have some side effects while you're titrating up when you first start, what do you tell people those side effects could possibly be? 

I see vivid dreams the most. A lot of times I warn them about the vivid dreams right off the bat and a lot of times the doctors have done that warning too.  It seems to be the most common one that the doctors warn them about, too.  We have seen that it works as well in the morning, so a lot of doctors will just proactively write for it in the morning rather than having a patient take it at bedtime. It does work on those endorphins that come at night so it does make sense that the dreams would be more vivid because those endorphins are coming out then.    I tell them that's the most common. 
The majority that I see might be dizziness, jitteriness, constipation, or diarrhea.  General stomach upset is one is one of the main ones. I tell them it's fairly mild if they do experience it, give it a couple of days before they increase their dose.  Hopefully, those side effects will kind of disappear.  If they don't and if they're up at a dose like three to four milligrams, that might be the dose they stay on. We don't have everybody that gets up to the target dose of the 4.5 but that may just be something they have to do lower than that.  I’ve seen a couple of people with anxiety, but I don't see that as much. The vivid dreams that come out probably more than anything but usually that can be mitigated by taking it in the morning. 
I never had vivid dreams, but some say these dreams are so fantastic they don't want them to end.
I have had a couple of people that enjoy them so well. I'm sure that your body gets used to it and the vivid dreams stop anyway.  Good if you can enjoy it while you can. I can't really remember dreaming. I can probably remember one dream every three years.  I'm sure I dream but I just can't remember.

Could you tell us what you think is the most common dose when somebody is stabilized on LDN? 

Four point five (4.5)  is the most common we see. Many of our patients can get up to 4.5.  It is by far the most common that we do.  The one milligram and the 4.5 are probably the two most common doses that we do. The one milligram is for when they're just starting to work up and they need that smaller dose to be able to tailor their work up. We do have a majority of patients who tolerate and can stay on the 4.5.  The two to the four milligrams anywhere in there, whether it be 2, 2.5, 3, 3.5, 4.  We do have some patients that stay on there and they're probably all about the same, to be honest.  It seems like our majority of patients are at 4.5 and then after that, it's anywhere from two to four, and those are all about the same in terms of quantities and where patients are stable. So, 4.5 is generally the most common. 

Now there are a few doctors that prescribe a higher dose than 4.5. Do any of your doctors do that?

They do, but not as much.  I do see it occasionally, like a 4.5 twice daily. Every once in a while, we do have some doctors that will go up to a five or a six. I do see the five or the six in some doctors and patients feel they're so close on the 4.5, they have faith that five or that six is going to really push them to feel they're optimal.  When they get put on the five or the six, they find it works better for them so they do stay on that. So, we do see that occasionally.  I don't know that there's much data on going above 4.5 but we do see every once in a while, for patients or doctors who think that extra little push will help. 
 

Yusuf (JP)) Saleeby, MD - LDN Radio Show November 2023 (LDN; low dose naltrexone)