Just about to start LDN

Hi everyone, me again. So I now have my prescription for my first lot of LDN. Im not sure why, but my doctor has only prescribed me 3mg? Im not a big person (52kg 170cm tall), but I thought it was supposed to be 4.5mg. I am planning to start taking it at 1mg and working my way up to full dose, but does anyone know if 3mg will be enough to start with ( I have a three month prescription). Im pretty sure I can convince my doctor to increase it to 4.5mg for my next prescription.

Also, Im currently on 40mg of Hydrocortisone. 20mg for Adrenal Insufficiency and 20mg on top of that because I had a bad flare in January and my GI suggested just to double my HC rather than take prednisone. I think Prednisone:hydrocortisone is 5:1 ratio. So 40mg Hydrocortisone is like 8mg of Prednisone (I think?!?!). Even after i taper down, Ill still have to be on 20mg Hydrocortisone for the adrenal Insufficiency (4mg Prednisone). does anyone know if this will be a problem?

Can i reduce the steroids as i increase the LDN. i tried taking the HC down 5mg and the pain was incrediable!

Another question: I work late shifts, some times not finishing until 11pm. I see from other people's posts that they take their dose at 9pm and try to go to sleep within an hour of that (or have side effects/ problems). Would 11pm be too late? And do you have to take it at the same time every night? And what if your sleep gets interrupted, will this disrupt the LDN from working? I have a bag and it is going through a phase of leaking in the night. Im going to try and have this issue addressed before I start the LDN, but yeah, sometimes it does whatever it wants.

and! if there are any other tips/ hints/ advice I would be very grateful.

Im pretty sure that the LDN will help with my stricture as the steroids have helped reduce the pain. So Im guessing the narrowing is mostly due to inflamation

thanks everyone

jo

hi Jo.. i can't comment on the steroid issue regarding LDN, as i've no experience with that, but i have been on LDN and am considering trying it again.

it shouldn't matter what time at night you take it, but it is preferable to do so just before going to bed, so you don't feel the funny affects it can give. try to take the LDN at a similar time each night though.

disruptions to your sleep won't affect it working... but you might feel a little wonky if you get up and walk around in the night after taking LDN - that's normal, just be aware of it, particularly if you're going downstairs.

the dose at which the clinical trial found to be effective for Crohn's was 4.5mg - that's correct. but i err on the side of what you're planning to do, that is to start off at a very low dose, like 1 or 2mg, and slowly creep it up to 4.5mg.... take a few weeks to do this - my schedule was to start at 2mg, stay on it for 10 days, then 2.5mg, stay on it for 10 days etc etc..

obviously, we can't expect any immediate benefit to our symptoms when we're taking it slow to reach the desired dose, and even once you're at 4.5mg, you need to stay at that for at least 3 months before you might feel benefit. however, i noticed (and so did others) that i looked better even on the lower doses, and i certainly felt brighter.

good luck! please let us know how you get on with it.

thanks Dingbat

Um, so did you lower your dose back down to the dose where you felt best? Or did you stay at 4.5mg? I think I might phone my docotr and get her to rewrite the perscription before the pharmacy compounds it. It's too expensive here to make a mistake. Nearly $60 a month.

Three mg may be fine, but some doctors like to ramp up the dose slowly, which may not be a bad idea, particularly in a case like yours.

I do not know the effect of using steroids with LDN. They would seem to work against each other, but your doctor may have reasons for doing it this way.

I would say the goal is to be off of any immune suppressants, at some point and letting the LDN take care of the problem.

LDN should be taken in the evening, usually before you go to bed. There is no exact time, and it can vary a bit without any problem. I work midnight shift and I took it at night even though I was awake all night. No problem.
LDN does not care if you are awake, or not, it works all the same. The results are better with the body when taken in the evening. Although, there are people that use morning or other dosing times, if it bothers their sleep too much. If possible, stick to the evening dosing.

Now, I do not take it on my night shifts. Just to make sure my liver is not accumulating any extra LDN.

Dan

Keep us posted!!! Sue

Hmm, from what little I have read... I think the 20mg of HC I have to take for my adrenal insufficiency will be okay as it is a physiological dose (what a healthy persons body would make, so doesnt suppress the immune system). Im just worried about the 20mg I take on top of that. I think I will try and taper down as much as I can before I start, then continue to taper once Ive started

KiwiJo said:

thanks Dingbat

Um, so did you lower your dose back down to the dose where you felt best? Or did you stay at 4.5mg? I think I might phone my docotr and get her to rewrite the perscription before the pharmacy compounds it. It's too expensive here to make a mistake. Nearly $60 a month.

Click to expand...

mine was in liquid form so it was easy for me to decide how much to take and when to up it.

i felt fine on all the doses, from the lowest to 4.5... i only stopped because of mix-up via the pharmacy and the postal system and i got out of sync with the LDN.. i should've gone straight back on it - am seriously thinking of getting back on it now.

Okay, I just talked to the compounding company and they are going to make me some 1mg capsules so i can take it at 1mg, the 2mg, then 3mg. eek, now I just have to save up for a couple of weeks so I can afford it. i worked out today that my drugs cost me, on average, $46 per week! Mainly for my adrenal insufficiency, but still, cant wait until I can wean off a few off them!

Wow, Jo, that's quite a bit! Though all of my supplements from the naturopath cost me a little more than that and I still feel rubbish! Do you not get any of the adrenal ones on funded prescription?

The optimal dosage per my recent research for what is classed as "low dose" is 1.5 mg to 4.5mg...the most common for IBD and Crohn's has been the 3-4.5mg range, so you're within a normal range. The biggest study for Crohn's recently with LDN was at 4.5 mg, though.

I agree with what Dan said, that they would technically, on paper, seem to be opposing forces, steroids and LDN, since one upregulates the immune system and one suppresses it. Some of the stuff I read said prednisone shouldn't be taken with it, but if your doctor is aware of how to handle or what to watch for, or has a rationale behind his instructions, I'd stick with them (but question them still for a legitimate and sound answer). Good luck.

Okay, Ive been doing some research and it wold seem that the 20mg of Hydrocortisone i take daily for my adrenal insufficiency should be okay because it is only a physiological dose (what a normal person would make on a daily basis, but that my bod doesnt make on it's own). I will need to taper down on the extra 20mg that Im taking for the crohn's inflamation. Im thinking I will taper down as much as I can before I start, then continue to taper as I start the LDN. Kind of see-saw the two drugs.

Crazy thing is that my doctor doesnt actually know much about LDN. She is just willing to let me give it a try based on a conversation we had and some information I gave her. She does know abot high/ normal dose naltrexone and surmised that if it is safe to give people such high doses, it should be equally safe to prescribe me such a low does. She did know a bit about LDN for children with autism. i think I could be one of the first Crohn's patients to try it in New zealand.

Im excited though! Start in two weeks, after my taper and when I can afford to buy it!

I'd suggest you check the lowdosenaltrexone forum to see if anyone there (for any illness) had successfully taken LDN while on HC. My personal guess is that they will work against one another... so (if it were me, and this is my rational behind saying this) I'd opt to lower my HC to as low as possible, and increase the LDN to 3 - 4.5 mg as soon as possible, for as long as possible, BECAUSE I'd want to give the LDN the best possible chance of working... and your HC may interfere or delay it.. If its just a case of the HC causing the LDN to delay doing its thing... well, the longer on it at the optimum dosage, the better your chance it will work (even if only moderately). The thing of it is, naltrexone at higher doses has a long pedigree, doctors know and can weigh the risk of using it at those higher doses... At the incredibly low doses used for crohns, the risk we face is minute... not impossible (I'm sure your doc will periodically do bloodwork to check liver function, etc). When you compare the risks of LDN against any of the other traditional treatments, its akin to comparing the Girl Guides to Hell's Angels. Factor in that LDN has the best results (on a percentage basis) then its almost a no brainer to prefer risking LDN than risking any other treatment.

Hmmm, I would say though that this may be a different circimstance as Jo has adrenal fatigue and without the cortisone whe'd be really unwell. What she is taking is just to bring her up to a normal person's level - is that right?

Thanks ken,

yip, Im aware that HC (same as the bodies natural cortisol) can have immune suppressant properties. But the reasearch i have done is that 20mg of HC (which is the same as 4mg Prednisone, but has a shorter half life and you take it 10mg twice daily to mimic what your body would normally do) should be okay because my body doesnt make enough of it's own cortisol (same as some one with Addisons Disease), so it is just a Physiological dose (actually it's less that what a normal set of adrenal glands would make). I would be taking orally what your body would make all on it's own. without it I can go into adrenal crisis and die. Im guessing that if people with fuctioning adrenal glands can take LDN, then I should be able to even if I have to take the cortisol orally. Otherwise it would work for no one who makes the normal amount of cortisol. From what I now have looked into 10mg of prednisone and above has an immunosupressant action, anything below that is fine. So i should be okay on the 20mg HC for the adrenal insufficiency (sorry cant find where I read that info), but I will taper down the other 20mg HC that I am on for crohn's. Fun fun.

However! From the research I have done, I might even be able to taper the 20mg HC even further because LDN has been shown to help people with adrenal insufficiency as well.

thanks everyone for the advice. i look forward to seeing what happens.

KiwiJo,

From your research and what your telling us, sounds like you're on the right path. My best advice is patience. I was on about 8mg of prednisone when I started LDN and had a few set backs. Good thing was they didn't last long and I started to notice small improvements week by week. I also follow SCD diet in conjunction. On LDN since May/09 and off of prednisone since July/09....nothing even close to a flare since.

RobK

Found this online, not sure if it'll be helpful or not...

http://www.lowdosenaltrexone.org/index.htm

Thanks Nyx

That's the website I sent to my doctor to give her some information about LDN, lol. took my first 1mg last night, so far just really tired, no change in the crohns. i did have the random dreams though, so it must be reaching my brain!

I am likely starting LDN but after discussing it with my doctor I will likely wait until I am at 40 mg prednisone (I am currently at 55 mg prednisone). When I looked at possible interactions/side effects one suggestion a prednisone dose below 10 mg as acceptable to be using LDN. The problem with this is that I can't get down to 10 mg without a major flare (20 BMs daily). So I guess I will have to ride the wave and live with whatever side effects might occur from being on too much prednisone. Jill Smith's research looked like the only drug someone had to be off for a long period (8 weeks) was Remacaide.

There are various supplements that have anti inflammatory properties and I take small amonts of some of them, but have taken higher doses to control inflammation when needed.

Turmeric, Ginger, Pycnogenol, Magnesium, Fish or Krill Oil, Serrapeptase and many others.

Here is just some uses for Serrapeptase.

Post Operative Swelling and Pain: In Germany and other European countries, Serrapeptase is a common treatment for inflammatory and traumatic swellings. One double-blind study was conducted by German researchers to determine the effect of Serrapeptase on post-operative swelling and pain. This study involved sixty-six patients who were treated surgically for fresh rupture of the lateral collateral ligament of the knee. On the third post-operative day, the group receiving Serrapeptase exhibited a 50 percent reduction of swelling, compared to the controls. The patients receiving Serrapeptase also became pain-free more rapidly than the controls, and by the tenth day, the pain had disappeared completely.

Fibro-Cystic Breast Disease: Serrapeptase has been used in the successful treatment of fibrocystic breast disease. In a double-blind study, Serrapeptase was superior to the placebo for improvement of breast pain, breast swelling and induration (firmness). 85.7 percent of the patients receiving Serrapeptase reported moderate to marked improvement. No adverse reactions to Serrapeptase were reported. Researchers concluded that Serrapeptase is a safe and effective method for the treatment of breast engorgement.

Serrapeptase and Sinusitis: Due to its anti-inflammatory properties, Serrapeptase has been shown in clinical studies to benefit chronic sinusitis sufferers. In this condition, the mucus in patients' nasal cavities is thickened and hypersecreted. This thickening causes mucus to be expelled less frequently. Japanese researchers evaluated the effects of Serrapeptase (30 mg/day orally for four weeks) on the elasticity and viscosity of the nasal mucus in adult patients with chronic sinusitis. Serrapeptase reduced the viscosity of the mucus, improving the elimination of bronchopulmonary secretions.

Ear, Nose and Throat, etc: Other clinical trials support Serrapeptase's ability to relieve the problems associated with ear, nose, and throat infection, anosmia (loss of smell), nasal obstruction, laryngitis, difficulty in swallowing, often in just 3-4 days. Physicians assessed efficacy of treatment as excellent or good for 97.3 percent of patients treated with Serrapeptase compared with only 21.9 percent of those treated with a placebo. One anecdotal report indicated that Serrapeptase ended years of snoring literally overnight.


Here is a link to the effects of Magnesium on the immune system and inflammation.

http://www.nature.com/ejcn/journal/v57/n10/full/1601689a.html

Just a few ideas on how to get where you want to go.

Dan

Lesthemess,

One thing I found out when tapering off prednisone is I was doing it too quickly and at the wrong amounts. Most GI's don't know this but you really should be cutting down by 1mg at a time. I originally was cutting down by 5mg and usually by the time I got to 10mg I would have a flare up. So ask your pharmacist to prescribe you 1mg tablets which are available.

My key to successfully staying off prednisone is LDN!! It has been 9 months since I went off prednisone and I've had nothing even close to a flare up.

I also follow SCD diet.

RobK

Hey you LDN users and knowers...I thought that you could not be on Prednisone and such for LDN to work? Just curious....

Awesome! One week of LDN and Im down to 30mg Hydrocortisone (equiv. 6mg Prednisone). Still got 10mg to go, but I think I should be fine. I think Im noticing changes?? I have more energy and less pain, and my output (into my ileostomy bag) has sped up (I have been having problems with narrowing/ possibly stricture). So far so good!

Good news.....

great - keep it up, Jo

Still no pain! And, had a barium xray today which usually causes me agony, but! No pain! Hope this lasts

I love good news, keep it up!

Yeah...that is great news!

Kiwi!!!! Yahoo!!! Such good news....!!!!! Wonderful!!!! Are you taking anything besides the LDN and a little bit of Prednisone? Please share!!! Sue

Thank you for the report, and enjoy your improved health.

Dan

I went off pred, then waited (I believe it was a week, but I can't remember) before starting LDN. (I did a crude day by day diary at the time, it's here in the forum someplace).. The link for the www.lowdosenaltrexone.org is a good one, but if you really want to impress your GI, esp. if you live in the United States, show them this one... or just print off the abstract (you need to be a member to see it all... hey, maybe your GI is a member).. anyway, the link to show is:

http://www.nature.com/ajg/journal/v102/n4/full/ajg2007152a.html

That was the link that changed my life... I hope it does the same for others.

BTW.. my name is Kev... it isn't a typo, it's short for Kevin (an old Gaelic name)

Hey Kev, great to see ya!!!! Are you still on LDN? If so how are you doing now? Hope you are ok, haven't seen you in ages!

Hey, JL... Yup, still on LDN... and going strong. I just had complete bloodwork as a follow-up (man, they tested me for everything)... like, I've been on this stuff for years (well, 2+) AND no one knows for sure what long term exposure to this drug may do... Anyway, I'm glad to be a test subject, or guinea pig, or sacrificial lamb..
whatever you want to consider it, and my bloodwork is rock solid. It is all good...

I am so happy Kev, gotta Gi appt on Monday and my options are running out... on 40mg of pred and taper Saturday. I recently had a sigmoid scope and biopsy and landed it the hospital with some bleeding and he found some colitis now, because of the bleeding I had. So I am OUT of options now, Cimzia isnt here and now with Crohns and colitis in large bowel, I may try to talk again about. We was about to prescribe it but we went the Humira route. I am lost now and I need some imput from ya. Can you be on LDN whilst being on Pred or any other drug??? Much appreciate your thoughts, thanks.

Penny

Sue-2009 said:

Kiwi!!!! Yahoo!!! Such good news....!!!!! Wonderful!!!! Are you taking anything besides the LDN and a little bit of Prednisone? Please share!!! Sue

Click to expand...

hey Sue,

Im also doing the Specific Carbohydrate Diet, although Im not at a place where I can have the yoghurt or probiotics yet (hopefully soon). I take a whole lot of meds for Adrenal Insufficiency and Hypothyroid, including 20mg of Hydrocortisone (equiv. 4mg Prednisone), which i will likely need to take for the rest of my life.

i also supplement 300mg Magnesium, and 3x 1000mg Omega 3 Fish oil.

YesterdaY I had a barium xray to see if i have a narrowing/ stricture. So depending on how that goes there might be some surgery in the future?? Otherwise Im reluctant to take any other medication as i get such bad side effects from the immunosuppresants and anti inflamatories.

thats me!

Kev! Im so sorry for getting your name wrong! Totally accidental, I promise.

It was actually your diary that I first came accross when i googled LDN. I really wanted to read about a first hand experience of taking LDN and i found your diary very useful. It is also how i came accross this forum. So! thank you so much for bothering to put it all down in words

LDN works pretty darn good, when it works.

I can work two jobs and live a normal life. It is not all from LDN but a lot of it is.

Over two years and going strong. It is not a miracle cure, but it is as close to one as I have found.

Dan

Couple of things.. Kiwijo... I was kidding... no apologies necessary. I'm really glad that my diary helped.. you can't imagine the feeling it gives me to know someone else with this disease benefitted from my experiences. I second what Dan says... LDN isn't a miracle cure, but it is a wonder drug (like, as in I 'wonder' what kind of hell I'd be going thru if I hadn't found it, or its been a wonderful life since I went on it),,,, anyway, kidding aside for the moment... I'd go so far as to say that LDN might be to crohns what insulin is to diabetes... it doesn't make the disease go away, but it makes it liveable.

Hey JL, or Pen, or Penny... you change names as often as I change drawers.. about once or twice a year, even if it ain't necessary. ;-) The study only ruled out a specific drug (check the study link to see which one) BUT I went off pred... and it wasn't nice at first... for a couple of reasons.
1st, I knew I might suffer for it, BUT I was willing to risk that because I didn't want to do anything that might interfere with the LDN doing its thing, and it seems like suppressing your immune system whilst LDN is trying to get it to work 'right' for you is contra-indicated... the LDN and the Pred would both be working at cross purposes. 2nd reason is ... well, pred always made me feel better, but it didn't last... and I kept having to up the dose, then taper off, and I knew I couldn't stay on pred forever... anyway, I wanted to feel absolutely 'certain' that if I did feel better, it was because of the LDN, and not the pred.. That is one of the risks you have to be ready, willing N able to take... going off the immune suppressors and taking your chances that LDN will turn things around for you. It is a gamble, but boy oh boy, the payoff...

Thanks Kev... can just feel as soon as I taper I am in trouble, so time will tell. BTW you really should change your drawers more often LOL.

No need.. the old ones were birds eye maple, the new ones quarter sawn oak.

Bother! Back to feeling crap, but not because of side effects, so that is good.. Still going to hang in there hough. Still early days. thinking I might talk to my doc about taking some diflucan or somethign just in case I have some candida going on down there.

ah crap. had to stop the LDN. I think I went up to 3mg too soon and was having a lot of side effects (wierdly they were side effects most experienced by people with MS). Unfortunately my 3mg LDN comes in capsules so it's too inaccurate for me to halve/ quarter my dose. So its back to the doctors to get another perscription. think Ill start at 0.5mg for a couple of weeks, before going up again. the stink thing was that my intestines were getting better. Im gutted in every sense of the word!

Jo, rather than stop it, can you not just revert back to the lower dose you were on before 3mg? how long are you leaving it between hoiking up the dosage?

I did not have any trouble taking a full dose, but I only take it 75% of the time.

I take mine six out of eight days, just to make sure I am not building up anything in my Liver. Maybe you can do something like that, if you cannot break it down to a smaller dose?

I am sure 4.5 dose is not ideal for everyone. I weigh 200 lbs and I would think the ideal dosage would have some relationship to your body weight.

Dan

Ive only got 3mg capsules at the moment. I tried halving them, but still got the side effects, so I really want to go lower for a while. it's just not practical and probably not wise for me to try and get the dosage right every night by breaking open the capsules.

Ive definately not given up on the LDN, but I need to get some smaller dose capsules first. I started on 1mg for 1 week, 2mg for 1 week, then up to 3mg. I felt fine on 1mg, so think I'll go back to that (or 0.5mg) and stay on it for a few weeks, then up to 2mg for a few weeks.

Im about 50kg, so I think 3mg is probably my ideal dose any way. Ive also learned a lot about the other side effects of LDN that dont seem to be documented on official sites, but are talked about all over MS sites

Hey, here's an idea... unless its too personal. Could you describe your side effects so that others taking LDN, or considering it, know what they might lookout for?

I would also suggest that you stop the LDN (mind you, I'm not a doctor nor am I trained in anything related)... cold turkey... for 5 days to a week. If your side effects stop, then it is definitely the LDN... and you will probably need to see your doctor (If the LDN is doing it, then you may have to go way down in dose and slowly ramp up, OR your body may have a heightened sensitivity to LDN, and you may have to avoid it totally... either for a while, or permanently). But it is a decision you need to make in consult with a trained professional, not willy nilly based on pseudo information garnered from the web. Everybody is just so different, what works for one might not work for another... no matter how closely similar the cases might appear. I went toxic on AZA, (it wasn't pretty), but within 2 days of stopping it, the crippling pain went away.... however, the rash covering the majority of my body (part of the toxicity) lasted 5+ months.