Ldn love love love

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Joined
Aug 22, 2012
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5
Location
Nebraska
I just wanted to post my love for LDN. I have tried many medications for my crohn's. I eventually landed in the chair for remicade.... I have to say that I wasn't happy about this rat poison in my blood. I had a total of 7 infusions. and with each one I felt worse and worse. I eventually landed in the E.R. with extream headaches and chest pain. After a battery of tests, the drs told me they had no reason other than the remicade to blame. I have since started LDN. I take 3 mg a night. I have only had one slight flare in the 7 months that I have been taking it. I didn't have pain with the flare, just some bloody stools. I will take that any day over the aliens in my tummy feeling. :thumright: HIGH FIVE! I just wanted to share this with other people in case they were on the fence about trying it. I did have some sleepless nights at first, but with time it has gotten better.
Good luck
 
Hi, I've been taking LDN for a couple of months now--I take 4.5mg before bedtime. I think it helps a bit in the morning but by afternoon I seem to need it again. I am trying a new pharmacy, Irmat, in NYCity. Do you go to any special pharmacy, or just your local one? Are you able to get off all other meds? I am taking Llialda and Entocort (9mg for about 10 years now). I would really like to get off Entocort as my liver enzymes are slightly elevated and don't want to add on another issue. Happy for you that it is working!!! I was hoping for a little better reaction from it...
 
BelllaB
I'm sorry to hear its not working so well for you. I am off all other medication. But I should say, that my crohns is not the worst case ever. I always heard others stories and mine was never that bad. Just lots of tummy pain, and nausea, and blood in my stools.
I do still have cronic nausea, but I have medical marijuana to help me with that... (FOR THOSE PEOPLE THAT ARE GOING TO JUDGE ME< KEEP IT TO YOurSELF)
I hope that it starts working better for you soon. I go to a compounding pharmacy here in my local town.
 
Janica-

How long did it take for LDN to kick in? My son just started 5 days ago.

Thanks!
-xmdmom
 
It took me about two weeks.. and the worst part was all the sleepless nights at first. I would even take some tylenol pm or magnesium some nights. I wouldn't sleep but I would have so much energy in the am. it was weird. Good luck. I hope it helps him. :)
 
I started on LDN 9 days ago, after 5 bowel resections of my small intestines and over 100 hospital stays. All the the TNF biologic drugs just added another medical problem for me after being on them for awhile. 36 yrs of Prednisone has caused many health problems also, but I would probably be dead without it when I've obstructed suddenly. In Nov, I was hospitalized for Sepsis, a deadly bacterial infection that almost killed me. I decided at that time to get off immune suppressant drugs and try a gluten and dairy free diet. I'm lactose intolerant anyway, and had to take Lactaid pills to eat dairy which still didn't completely keep symptoms at bay. I read about LDN and had 3 local GI doctors plus one at Vanderbilt tell me my case was too serious for LDN, and wouldn't prescribe it. I took the info to my Pain Management Doctor, and she read it all, and called me in the LDN in cream form, so I would absorb it better. My compounding Pharmacist has 37 yrs experience in compounding, and made it easy for my husband and I to understand how to go from 1.5 mg to 3mg starting on day 10, and on day 20 to go to 4.5 mg. After ONLY 5 days I had my 1st solid BM in 36 yrs!! Granted it's small because of the narrowing from the Crohn's and from scar tissue but it was solid! I thought this can't be, but since then I go to the bathroom once per day always at the same time just as I'm getting ready to go to bed!! This is amazing. I also no longer have the joint pain I had before. This is unbelievable! I give God the Glory! I recommend giving it a try. It's so much safer than the other drugs available. :thumright:
 
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I am glad you found something that worked for you. Everyone is different and everyone's disease is different. Keep us updated on how things go. Heyjude if you feel comfortable and have some free time I would like to hear your story over in the "My story" section I think after having the disease so long and everything you have been through you would really be doing everyone a favor spreading the knowledge, I hope things continue to go well for you on LDN.

http://www.crohnsforum.com/forumdisplay.php?f=5
 
I would be happy to share my story. It's been a long and complicated journey, but I have experienced many things that might be of help to others. I'll start putting it together. Thanks for asking me to share.
 
Heyjune. So glad to hear your story!!! That is great that you are doing better. I too HATE the prednisone. as unnecessary as it is sometimes.... it can be killer.

No guts no glory- I started on a lower dose, you can always move up if you have to. the higher does will increase the odds that you might have sleep disturbances. :( Good luck
 
I'm glad to hear yet another 'success' story from someone on LDN. I'd like to share some thoughts that came up in another conversation I had about LDN. One of the potential issues when dealing with a specially compounded substance like LDN is shelf life. How long it retains its ability to cause the rebound effect that makes it work on our disease. Some compounding pharmacies take extra steps to ensure the product they offer is as fresh as can be. I think these are the exception, rather than the rule. Here is the problem as I've seen first hand. The equipment used to make these custom pills do so in batches of 100. (or at least the pharmacies/pharmacists I've dealt with tell me). But doctors typically prescribe in increments of months... 30 days, 60 days, 90 days. My script is like that.. a 90 day supply. so the pharmacy makes me a batch.. of 100. What happens to the 10 I don't use. Pharmacies aren't about to toss them... So the next guy who wants LDN gets my 10 leftovers, plus another 80 fresh pills... then the pharmacy now has 20 leftovers... So, there is a real chance that one can get a supply of pills that have pills that are close to or beyond their best before dates... and that can cause problems. And, although I feel so idiotic admitting it has taken me almost 5 years to see a simple solution, there is a simple solution. If you are dealing with a typical pharmacy, and not a 'devouted' one, ask your doctor to write your prescription for 100 pills. If we all did this, there'd be no leftovers in the supply chain to cause anyone any issues ever.

One last thing to add. I try not to bend peoples arms to try LDN. That is strictly a choice they have to make on their own... weighing all the pros and cons. But, if you do, there is one thing I would ask that you do..... not for my sake, not even for yours; but for everyone else who might follow in the LDN path. Stick to the exact same regimen as described in the studies... same dosage, same delivery method, same trial period. Why.
Well, that way, if it works, when it works, you will be another positive example of what it can do. If you change it, and it does not work, is it because you fell into the 11% for whom it does not work; or because you changed the experiment. There. Down off of the soap box. I mean, if you try it at the prescribed dosage, and there are issues... then try a lower dose... or a different delivery method... but do not change the bona fide treatment in anticipation of issues. Doing so puts a lot more than just you at risk.
 
Kev- Very good info. Thank you for sharing that. I have a pretty good pharmacist, but have never asked him about this. I guess I had better. He only makes me 30 day supplies and I have had no problems yet. But this is great to know. Thanks again.
:)
 
Thank you for the well wishes. Now to answering your questions. The reason I had to start at a lower dose is because I'm tapering off my Fentanyl pain patches. This is an opiate drug, and opiates are one of the few drugs that are not advised to be used with LDN. It would take me too long to explain why, but would be happy to send you documentation if you want to know, or if you are currently on any opiates.

My Dr that called my RX in, used a Pharmacist that has been compounding drugs for over 37 yrs. She has a great reputation here in Chattanooga. She actually ordered mine fresh, because as Kev mentioned above you don't want to get some that were left over from months ago. She had some available but suggested I wait another day to start using it, so she could get me some fresh LDN. She feels one of the reasons ppl don't have as good of an experience with LDN is because some Pharmacist used "leftover" pills to fill their prescriptions.

The reason I'm using the LDN transdermal cream is because most of my small intestines have been removed, and without them I don't absorb medications by mouth effectively. I have done extensive research on LDN and would be happy to e-mail links to any of the articles, studies, and documentations that I have in my LDN folder.

I would also like to reiterate what Thermo said above. Everyone is not going to get the same results from LDN. I only shared my short time results because I feel this should be an option for those of us with auto-immune diseases. I'm frustrated that I had to go to 4 GI doctors since November, to no avail. I finally got my Pain Management Doctor who specializes in treating Crohn's patients, and has a son with Crohn's to listen to me, and read all the documentation I had gathered. BTW, her 30 yr old son is on Remicade for his Crohn's, so it's not because she is against Biologic drugs for the treatment of Crohn's, but was open to learning all she could about LDN, and eventually called in my RX, again at a lower starting dose than most, but if I continue to do well with it, I'll be up to the normal 4.5 in 10 days. Take care~Judy
 
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