When I went on LDN I felt like absolute hell for the first couple of weeks. I was bleeding, in a lot of pain and could not get out the bathroom. I wanted to give it up and go back to my painkillers but my husband made me keep going.Julies
I have just started so i dont know. Just been on it for a week and may have gotten worse just a tad. I had went 15 days with no signs of bleeding and today saw a small trace. I am on cortenema and proctofoam as i only have rectal involvement. The bleeding could have come from a small fissure i have been dealing with and not my crohns. I wish i could tell you more and offer some help. I just decided to try this before starting the big guns or surgery and thought it could not hurt. I am very depressed today as it appears i have taken a step back. I am sure Jdtm, kev and joyce can help you more.
Good news! I feel better and have lower calprotectin scores on 3mg LDN than on 50mg prednisolone! Crazy. It is not a miracle drug but it's been pretty amazing for me. I especially notice the increase in energy For the first time in years I am holding my weight, don't have to worry about having an accident in public..! Hope it works for your son.Hi guys,
My son has FINALLY started LDN !!!!!! Yippee after pushing for a long Time his new specialist has agreed to let him start 3 mg . My son has just been hospitalized for 2 and a half weeks with a 10 cm abscess in his abdomen which has not budged at all after being on triple antibiotics this whole time we were getting pretty desperate and I have been researching this drug for a long time. He has only been on it since Tuesday but does seem to have a lot more energy ( not sure if this is because of the LDN or just happy to be home we have been through hell the last couple of weeks now hoping this drug I have dreamed of giving my son gives him some remission so he can put some weight on and finally grow. Please everyone cross your fingers and toes for us.
I never bothered to ask - I paid to see a naturopath and he prescribed it for me.I'm going to be trying to get my GI to prescribe LDN instead of escalating to biologics, how hard was the fight for you guys? In my experience getting what you want out of a doctor can be like pulling teeth, especially when their way gets them a kickback for getting you hooked.
What painkillers were you given? LDN's action on opioid receptors messes with them quite a bit.Hmmmm I am on 3mg, I am not going any higher at the moment as I previously have experienced nausea at higher doses. It may be coincidence but I need a break before I try again cause it was pretty horrible.
Anyway, do you think anything that disrupts the immune system can cause a flare? Don't get me wrong I use the term 'flare' loosely! Still nothing like what I experienced before.
I went to the dentist last week for a few fillings (and resulting toothache) and that night was unwell during the night. I wonder if my immune system kicking into gear has messed with the LDN's function a little, almost in the same way as if I caught a bug.
It's a novelty to me that for the first time I'm having to put in effort to lose weight! haha!
I've only been taking paracetamol.What painkillers were you given? LDN's action on opioid receptors messes with them quite a bit.
My pain is at a level that can be controlled by infrequent paracetamol. Dihydrocodeine didn't even touch it before, I may as well have been eating sugar pills. Doc said pain was too severe for OTC painkillers to work?Ive heard that I cannot give him codeine we haven't needed any pain relief lately and hopefully we don't I will probably just give him Panadol liquid ( the kids medicine) this seems to work . Any idea on the codeine? Thanks for your posts in here I know we still have to watch things on LDN but I would say since we were first diagnosed in may things are going well. I am hoping this is the long term solution for Trent and I appreciate all the posts on LDN good and bad it is all information which I cannot get enough of. He went out bike riding today, mowed the lawns and didn't stay in bed playing computer games so today has been a great day. Good luck with the " weight gain" and stay well best wishes Wendy
I definitely got worse. This was not helped by coming off dihydrocodeine at the same time. I felt like hell for probably a maximum of 2 weeks. I wanted to stop taking the LDN and go back to painkillers, but my husband would probably have divorced me if I gave up, so I persisted. I bled more than ever, visited the toilet more than ever, and was in agony.Hi Guys! I just started LDN a couple of weeks ago and, as expected, have gotten a little bit worse. I'm sure it's different for everyone but I'm curious to know: for you all who felt worse for a while, how long did that last before you started to feel better?
I'm on 3mg. I'm sure I would benefit from a higher dose but I'm feeling well enough. I was on 4.5mg and had a horrific episode of nausea. I am pretty sure I had a bug but it's left me a bit apprehensive about upping my dose again. I feel well enough, so there's no point in increasing the dose for meHa! Then I want my doctor to hate me too! Thank you so much lsgs... I need the reassurance and encouragement to stick it out. I'll keep you updated. What is your LDN dose? I'm taking 3 mgs now and haven't decided whether to try to work up to 4.5 or not.
Such a great feeling isn't it? I remember realising I no longer needed painkillers (or imodium!) anymore. Pretty awesome feeling.Hello All! Thank you for your advice and support! Great news! I'm doing great! I'm totally off Cimzia and slowly tapering off Entocort and my guts are doing well. I had a week and a half of feeling slightly worse but I'm now feeling shockingly good thanks to LDN and medical marijuana. The even better news is that I've been ingesting less and less marijuana oil because the LDN seems to be doing the trick on its own.
I watched a really interesting video of Dr. Bernard Bihari (the doc who pioneered the use of LDN) on youtube (https://www.youtube.com/watch?v=x54Jccr8GT8). I was looking for answers because although the LDN was working, I was hardly sleeping and was feeling agitated on 3 mgs. He said that if LDN is causing insomnia it simply means that you're taking too high of a dose because some people are much more sensitive to naltrexone than others. He said you could lower your dose as low as 1.75 mgs--and that 1.75 was the lowest dose that was therapeutic. He felt like 3 mgs was an adequate dose for most people and that 5 mgs was the maximum people should take. I took a couple of days off from taking the LDN and I've started back at 1.5 mgs. I'm going to raise my dose to 1.75 in a couple of days. I'm hoping to work up to 2 mgs and stay there. I tend to be super sensitive to drugs so it's a relief to know that LDN can work at lower doses. Just to be clear, I'm not trying to say that 4.5 mgs is too high of a dose, just that people who can't tolerate 4.5 can get the same benefits on a lower dose.
lsgs: thank you so much for your support and for sharing your story.
SallyJane: that is very wise advice!
Kev: thank you for sharing your wisdom and experience!