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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Low dose naltrexone website

I am just hearing about LDN even though it seems to have been around for awhile. It has been a little frustrating that I have seen “specialists” for 18 years and had never heard of Vanco or LDN until recently joining this group. These are things I could have possibly been prescribed. There is a website specifically for prescribing LDN and I am curious if anyone has used it??? (Here is the link - https://ldndoctor.com) You basically sign up for an online 30-minute consultation with a prescribing doctor and then he/she may provide a prescription for you to get the medication at your local pharmacy. The consultation costs $$ of course. I don’t see my hepatologist until July and thought this might be a good way to get started on it. Just seems weird to me to do this online. Thoughts?

http://www.lowdosenaltrexone.org

Go to this website and read…

You should be able to ask your primary care to call you in a prescription to one of the compounding pharmacies that compound LDN.

There is no reason to pay that much money for a “consultation” for a six month prescription. This makes absolutely no sense to me and doesn’t feel right.

My local alternative oriented doctor prescribed LDN for me about ten years ago now. I’m sad to say PSC has progressed nonetheless although I stay on it because who knows what I would be experiencing otherwise and I have had PSC for almost thirty years and am still at stage three, with no life threatening complications thus far (although I do feel sick 24/7). I also began Vancomycin two months ago but still too soon to know if it is helping.

You cannot get LDN at your local pharmacy, only at compounding pharmacies. There are a couple known for compounding LDN.

Thank you for your response and for the good info. I know it felt weird to me too. I just saw my PCP yesterday but learned about this medicine just today. Ugh! I haven’t been seeing her very long since I just go for routine things but I get the feeling she’s not super comfortable with doing anything for my PSC because she is very unfamiliar with the disease. She’s a wonderful Dr. so I may ask anyway. I do see a Hepatologist but I really don’t care for her and that is not a good thing. She is not proactive at all and pretty much just monitors my labs. Just waiting until it gets to a point where something has to be done. Unless numbers are bad there is no need to see me. So I am in the process of trying to get in to see another Hepatologist in another city that I know has a lot of experience with PSC so another option is waiting to see him. I have some options so I’ll figure something out. My thinking is there is no harm in trying these meds so hopefully I can find a Dr. that agrees with me. :wink: That is awesome that you have gone 30 years. Good for you! I’m sorry you feel sick all the time though. I was diagnosed 17 years ago (but I think I had it a few years before diagnosis) and am starting to have days here and there of feeling sick. Is the type of doctor you see a naturopath? Is it beneficial to see an alternative oriented doctor when you have this disease?

I think many of us look for solutions to our problems and understandably so. However, not all that glitters is gold. Yes, these drugs and numerous others have been around for some time. Usually though there is a good reason why they are not prescribed. Usually, its because there is limited or little value in doing so or there just isn’t enough evidence to support their use. So far there is little evidence supporting the use of LDN for PSC. Indeed, if you look at research for other diseases with similar debilitated symptoms, you will see that it isn’t effective at all for relieving the likes of fatigue and sickness. There’s certainly no evidence so far of its ability to halt or reduce the progression of PSC.
Vancomycin is a little different, in that some promising results have come from trials. But that too may not be the panacea. There are always concerns about rendering antibiotics ineffective as a result of long term use. So once again care is needed. Unless your doctor is part of a specific trial is is unlikely they will recommend it for you until all those risks and efficacies are known.
As a final point, I wouldn’t recommend you “just try” anything without your own specialists input. In many cases you may end up doing more damage than good.

I just started LDN 9 days ago. I don’t expect it make a huge difference with the progression of my PSC, however, due to many other ailments that I have that it has shown in some to make a difference, I decided to go for it.
It has shown to have great benefits to too many with IBS/IBD/UC issues and my goal is to be proactive as best I can as PSC is not my worst concern. All the other faster moving diseases that come with autoimmune issues are.

I will get my hepatologists input on it in April. Fingers crossed she is open to alternative therapies when there are really NO man made options that show any better results besides prolonging the inevitable. It is Natural too so less of an issue of putting unnecessary synthetics and fillers in my body that our livers also cannot process and store in our tissues thinking maybe one day it will have a use for such things.

Due to LDN being readily available, no studies by big pharma will ever be done as there is no profit in it for them. Bottom line, I cannot just sit back and wait for PSC, UC and other issues to just return and then fight. My diet is great as is my exercise as I get more energy, so I’m all for seeing if I can assist my body in the interim via both natural and if and when necessary pharmaceuticals avenues prior to PSC and other autoimmune diseases arise / progress.

Good article here too - just food for thought
http://www.fiikus.net/?ldn

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Excellent article. Thank you.

Yes, an alternatively oriented physician was the first I’d heard of LDN. She recommended and prescribed it.

Why don’t you print out a slew of information and articles for your doctor. Really liking one’s physician is a big plus and hopefully she will want to learn about PSC.

Yes, it sounds like a more proactive hepatologist might be a good idea. I remember the very first hepatologist I went to shortly after I was diagnosed in 1991, a famous Boston doctor and “expert” then in primary biliary cirrhosis (the sibling disease to ours and what I was initially misdiagnosed with having), said to me: “Just sit tight until symptoms begin to emerge.” Needless to say, that was the end of my working with him.

I am, truly, unaware of any possible harm in taking LDN. It helps many people with a lot of diseases. So why not?

Vancomycin is another much more complex story and you would need a hepatologist to prescribe and follow you on Vanco.

Let me know if you have any other questions.

Best of care,

Susan

Hi Susan,
So tell me if you are comfortable, what do you feel that maybe LDN has brought to you?
I stopped taking sleeping meds (gabapentin 600 mg was my best option to take an edge off and sleep most the night, and not hard on the liver - bonus!). My LDN is liquid compound of sleepy herbs: wild oats, melissa, valerian and passion flower. I still wake up 3-4 times as I’ve always done, but find my energy throughout the day is greater as I’m like wow, I actually am still going 12 hours later. Forgotten what that was like to feel like not sleeping at 6pm instead of 10pm.

I also have found thus far that my mood is lighter. I take 10mg prozac for last few months as 2013 - 2017 just about took me out and even at a small dose like this, I responded by feeling more light and actually finishing tasks. So, I’ll stay on it for now but who knows, maybe I’ll get to delete another med in the future.

I am noticing also less brain fog. Could be that I’m final taking a lot less antivirals, which I know can cause brain fog in some, but it’s so very cool to actually feel like I don’t have to blink my eyes constantly to see clearly.

I’m not giving LDN full credit - but I know my 53 year old body well and I’m excited to be making some forward, positive movement in other areas. I do plan to ask about vanco when I see my hep in April again… especially if 6 months later my ALP is still high - hate the thought of stressing my liver over thick bile if easy to thin without a lot of negative side effects.

Thanks so much and you too continue to take care!

I really have no idea what it has brought to me… I imagine things might be much worse without it.

Why did you start it? And you noticed no changes in anything?
I appreciate your feedback, just really curious as very few with PSC are trying LDN whether it be for PSC issues or those that are related and come with that LDN has shown to help.

Thanks SusanG and hoping greater days of feeling better. Sick 24/7 sounds harsh. Just wanted you to know.

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My intuition is that it is right for my body. I began about ten years ago. Thanks for your compassion.
I only rarely get extremely sick but I always feel unwell.

Hi There -
Thank you again, I’ll keep you posted on how LDN goes for me in the coming months.
Take care,
Jennifer

Hi Jennifer,
If you don’t mind my asking, I was wondering if you have continued with LDN and how you are doing?

Hi There!
Absolutely no problem checking back… as apparently I did not.
I did not stay on LDN. I do plan to look into it again when my life stabilizes a bit more. I will also take the pill form. My ND was making a solution and I did not enjoy it. :slight_smile: I also had some push back from docs on it and didn’t have it in me to push back.
How about you? Are you thinking to take it or for another?

Thank you for circling back… March 2018 seems so long ago…
Jennifer

Hi again,
Sorry I misunderstood; now that I look back I see what you meant. I also know what you mean about doctors. They say you shouldn’t try alternative medicine without discussing it with your doctor but at the same time, they don’t really seem very open to talking about it. My daughter has PSC and UC. We were thinking of trying LDN for her UC but ran out of time. She was just worn down…sick of being sick and tired of being in and out of the hospital so she chose to have her colon removed. She has been through a lot; even lost her eyesight in one eye from vasculitis. After her surgery the PSC was very quiet for two years but her most recent MRCP showed progression, so they started her on Ursodiol. I would love to try LDN but it’s scary to make that leap without her Hepatologists blessing. She doesn’t really want to deal with this disease and lets me do the research, diet planning, and worrying…which her therapist said was fine. I try very hard to let her feel normal and not worry about it. She graduates from college in May after having to drop out several times due to flare ups. I am keeping my fingers crossed but other than needing an iron infusion she has been feeling pretty good. Sorry for rambling, it’s just nice to be among people who understand. I know I don’t have it and I am sorry for all of you. It breaks my heart that my daughter has it and I wish it was me. I hope you are feeling well and I will say a prayer for you (if you don’t mind)
Erica

So sorry Erica! I know as a mom how you feel. I’m the one with UC (in remission although having my colon removed in a few weeks) and PSC and it scares me that I may pass this on to my kids. For myself personally my hepatologist is not on board with any alternative medication and it’s frustrating. I had to push to get her to agree to let me take vancomycin. I would like to try LDN but I know she won’t be on board with it and the task of finding an alternative Dr that will prescribe it seems daunting right now. If it was something I could easily get my hands on I would take it. If one of my kids were in my shoes I would probably have them take it as well. I have learned after years of dealing with chronic issues (my daughter has another medical issue as well) that even though I have the utmost respect for the many doctors I’ve come across that my health and my daughters health is what’s most important and I am learning to be very proactive when it comes to what we need. Please update us if you end up getting her on LDN. Good luck and I will say a prayer for you and your daughter.