Want to start LDN

[jpsj]

Hello there

Over the past few weeks me and my girlfriend who was diagnosed with crohns July this year but has suffered and been fobbed off by doctors for 4 years have been reading all there is to know about LDN and we are very excited at what we're seeing. Her symptoms play a big part of our life at times and it is starting to affect her job badly. Kev if you're reading this your 5 year LDN story is just fantastic.

We still have a few questions. My girlfriend was prescribed prednisolone which did help and gave her lots of energy, she is currently taking budesonide and azathioprine (for roughly 4 weeks) neither appear to be doing anything to help.

NHS have said she needs another colonoscopy as the last was inconclusive, this is fine by us as it can't hurt. What we really want to do is come off the aza completely and start LDN. Do you have to ween aza or can she just stop?

Thanks for reading and i'll continue to update once she has started LDN.

 

[Kev]

Here's hoping your quest for LDN in the UK is successful. I know others have tried to get it, but I can't remember any success stories (in obtaining LDN). Let us know how you make out. As for AZA, I was taken off it cold turkey by ER doctors after a severe reaction to it.
I don't know if that is the appropriate action when one just wants to come off it. That you will have to determine from your physician. If you do get it, my advice is to make sure it is the correct type of Naltrexone, it is compounded properly and ensure it is relatively fresh compound. Unless there is strong info to indicate otherwise, go with the established dosage AND delivery method. If those don't work, check for candida, then experiment (if you consider it worth another try) with dosages or other than oral pill form. I suggest that, simply because it was how the trials were staged, and I "know" it worked for me.... and a majority of those who've tried those tested methods N dosages.

 

[jpsj]

Thanks for info there Kev.

Once a prescription has been obtained we were looking at dealing with one of the 'recommended' pharmacies listed on the LDN information website, looks like there is a reputable one in Glasgow which isn't too far from us. Plan was to start taking it in 1.5mg in liquid form, as I understand it can only be taken in such small quantities in liquid form? and then slowly moving up to 3 or 4.5mg capsules.

 

[Kev]

OK, stupid question time. Why start at 1.5? Why not start at 4.5mg (as per the studies) and see what happens over the course of the next 8 - 12 weeks? I don't know (but am willing to look at any evidence/data from any of the successful trials) that a dose below 4.5mg will trigger the 'rebound' effect that seems to be key to getting LDN to stop Crohns.
Even at the 4.5mg dosage, it isn't a one time, immediate benefit response that is typical. More a very slow, gradual upturn ... so slow and gradual that you may overlook it, even dismiss it. Then (and whatever it may be is different from person to person) I'm guessing you will see something... something concrete... something positive.. that you will 'know' is the first solid sign it is working. Could be a solid BM, or at least the Big D stops... whatever. Then once things do turn around, the speed of the improvement ramps up. At least, that is what happened in my case... others too (I think.. I simply don't trust my memory of anecdotal info I've read on here). If it happens to you, and I happen to think it will... the odds are in favour of anyone trying this method.. you will KNOW. Every day you will wake up feeling better, and better. It took me a long time to get used to that, and to stop worrying it would somehow stop (like all the meds before). Now I feel pretty complacent... (maybe not so smart a thing to do with this disease), but even if tomorrow... for reasons completely off my radar... it did stop working, welllll I've had 5 years living like a normal person... and that is something I never really thought would happen. Hey, like I said in another post, there are no guarrantees in life.

 

[Jmrogers4]

You can keep taking Aza while the LDN "kicks" in. Due to a miscommunication with my sons doctor he was supposed to keep taking the aza and stop after 2 months. We stopped with the first dose of LDN which is okay you do not have to ween off the aza. Best of luck - it has been a wonder drug for us so far