When to give up on LDN?

[cowgirlnz]

Ok. It's been nearly five months for our son on LDN now. We've had a couple of weeks that looked really promising, but it's never lasted. He's lost 2 kgs since he started, which is a lot for a skinny five year old, and the crohn's symptoms became so bad recently that his doctor has put him on an elemental diet to try and calm things down. We have another appointment in two weeks and he wants to discuss going on some harder hitting drugs.
I'm interested to hear how long others have waited for LDN to show real results? At five months can we presume it's not going to work for him and move on, or is there still hope??

 

[Dexky]

Hi G, sorry to hear it doesn't seem to be working. I know you had high hopes. What does the GI say?

 

[cowgirlnz]

Our GI was never too keen on LDN to start with - but all credit to him for supporting us to give it a go. The blood tests and general symptoms are all indicating that the Crohn's is not currently under control, and will be doing more internal harm if it isn't managed better. We're looking at 3 to 6 weeks of elemental diet (as long as he can tolerate - first week has been good), to hopefully get him into a degree of remission (the alternate being prednisone to accomplish this), and then he's talking about either Methotrexate, adalimumab or infliximab. We haven't used any of these before and reading about them is of course a bit scary...

 

[slice]

Try not to let the all the scary stuff you read influence your decision about these meds. They can be life altering. I was so mad at myself for spending so much time avoiding serious meds. Once I started Cimzia I couldn't believe what a difference it made in my life. I just wish I could go back and undo the damage to my joints and bowels that doing nothing did but I can't. All I can do is urge you not let your fears get in the way (fears which are totally understandable--I can't imagine the agony of having to make these decisions for my child.) But all of the data shows that the risk of doing nothing is much higher than the risk of any of these meds. I haven't had one bad side effect in 18 months and I can't say that about LDN or almost any over the counter medication I've taken ever.

 

[DMS]

So sorry to hear your son isn't responding to LDN.
I think after 5 months I would move on to something else, if I remember correctly the studies show most improve within the first 4 weeks, with another improvement sometimes at 4 months.
My son is also on LDN and his CRP dropped within the first 5 weeks, it sounds like you've given it a fair shot, but I agree with others who say letting the damage continue is not what you want to happen.

This is just my opinion, and obviously you are making a tough decision, good luck to you and your boy.

 

[Kev]

5 months is longer than the initial trials ran... It took a while to work for me, and it really depends on the strength of one's immune system to turn the tables and fight off crohns. I am assuming that the form of Naltrexone used in the formulation was the correct type, and NOT the slow acting, time delay variety? There is another site (I believe that it goes by the name lowdosenaltrexone.org) where you might find more info or assistance on what if any measures you can take to increase the odds of it working for your son. But it may be that he falls into that 11% ratio for whom LDN doesn't work.

 

[Ms Cordelia]

Have you tried MMS (Miracle Mineral Supplement)? It has done wonders for my husband. He tried LDN and had a bad reaction due to a lactose filler (unbeknown to us). He has been hesitant to re-try LDN with acidopholus in fear of a bad reaction again. I would try MMS and start slow. In addition add a non-dairy probiotic daily. My husband has severe crohn's and after constant suffering for 7 years, he saw a great improvement within a week of starting MMS. Good luck.

 

[Rebecca85]

Please be careful with MMS, and read up on it before making a decision. Our wiki is a good place to start: www.crohnsforum.com/wiki/mms

 

[D Bergy]

For those who are hesitant about using MMS, and I would be with children in particular, there are other better tested alternatives that may help.

Artemisia (wormwood extract) has a pretty good record of helping Crohn's symptoms and has some similar properties to MMS, which are it oxidizing characteristics. It also has other potentially beneficial properties such as reducing TNF alpha levels as shown in studies. It may even work better for this reason. It remains to be seen.

This has been used for thousands of years and its safety is not in question. Some times LDN is not enough on its own, and I do not know if it would keep me well by itself either.
I would try this safe combination on my own children without any hesitation.

Wormwood products should not be used if you are pregnant or are trying to conceive.

http://www.ncbi.nlm.nih.gov/pubmed/19962291

http://www.ncbi.nlm.nih.gov/pubmed/17240130

Dan

 

[Kev]

My LDN is acidophilous based too, as I'm extremely lactose intolerant... How intolerant? I'd elliminated all lactose from my diet (or so I thought) and was still experiencing issues (just for clarity, this was pre LDN... back in the dark days).. when I discovered that my 'brand name vitamins contained lactose as a filler.. switched to a generic that didn't use lactose, problem solved. So, long winded story shortened to a life sentence... it could be that if LDN was compounded using lactose as a filler/binder agent, it might be enough to tip the scales in a bad direction. If acidophlious is used, it actually might help the LDN work as it helps keep candida in check... and for reasons unknown to me, folks have noticed that overabundance of candida can slow/interfere with the use of LDN. It is a fairly common topic of discussion on the lowdosenaltrexone forum. If you tried LDN compounded with lactose filler and it didn't work, you might be missing the opportunity of a lifetime by not re-trying it with acidophilous. I'm a 3 yr testament to how well LDN can work.

 

[cowgirlnz]

Thanks for the continued advice. The filler definitely wasn't lactose, and our son's diet is lactose free. But the filler wasn't acidophilious either, so I should look into it further. Our son has now started on methotrexate injections, plus just coming off six weeks of elemetal diet. As much as I hate the medication, I have to admit he's doing really well - has put on 2 kilos, crohn's symptoms minimal, and no bad side effects yet.
However I still don't want to see him on these kinds of drugs long term. If we can achieve remission for a sustained period I'd like to start up something like LDN again, and see if we can wean him off the harder drugs. Maybe we'll have better luck if we start from a good place??