It Worked: Low Dose Naltrexone (LDN) and Pentasa

I haven't been on HW for some time, now, but wanted to post the latest information about what we found works for my daughter: 4.5 mg daily of LDN plus 4 grams daily of Pentasa (divided up into 4 doses).

She used to need monthly B12 shots but now those are a thing of the past. She used to take iron supplements but still had trouble keeping iron high enough - that isn't a problem anymore. Her iron is fine though she stopped taking iron supplements. All her labs are normal and there are no signs of inflammation: sed rate is 1 and CRP is .65. She used to have a stricture but it is gone, now. She has no Crohn's symptoms.  

I have no doubt that if she were off the meds Crohn's symptoms and bad labs would come roaring back as they have so many times, before. I sincerely doubt that Crohn's EVER goes into remission without meds and/or dietary intervention. We found the LDN worked, but only up to a point - it is the combination of LDN with Pentasa that appears to have put her into full remission (and I don't use the word "remission" lightly).

She eats anything she wants. (Though she was on SCD or modified SCD for years, previously, which probably helped her get more traction than other patients have had with both LDN and Entocort.)

I'm grateful to everyone on HW who shared their experiences, helping our family find its own path to remission.  

 

That's great news, but don't discount the possibility that she could have gone into remission even without meds. It very well may be the LDN, but it also could be something else entirely (which some may call luck).

Seriously? Not again.

Seriously? Not again.

Deja vu big time.
And I am outta here.

That is simply not fair. If NJmom shares with us a treatment that has personally worked for her then you have absolutely no right to show disrespect. Especially if you haven't tried it yourself and have no idea what you are talking about.

I should clarify that my "seriously? not again" comment was not directed at NJMom.

I believe that is also the case for NiceCupofTea's reply.

I'm sorry you feel I was attacking a success story. That is not my intent at all. I'm very pleased her daughter is in remission. I am simply questioning how anyone can claim with certainty that they know what brought that remission on.

beave said...
I should clarify that my "seriously? not again" comment was not directed at NJMom.

I believe that is also the case for NiceCupofTea's reply.

That!

Didn't even realise it would be taken that way.

I should have congratulated njmom on her daughter's remission, though. Bit rude of me to post in her thread without saying anything about it, but I was a bit scared of saying something I would regret, so I scarpered before I could - as it were. The saying something I might regret had nothing to do with njmom or her daughter, I should add.

PS: njmom - happy for you and your daughter that she is in remission. A fully symptomatic one too, which is even better.

Congratulations! I hope your daughter has continued success. Thanks for sharing.

I didn't have time to check back til just now - to read my post as simply a yay or nay for LDN is to miss the point. 

LDN did not work well enough by itself, accomplishing symptomatic relief but not good enough labs and she still had to get that monthly B12 shot because she couldn't seem to absorb it no matter how high the oral dose (she has been on LDN since 2009). It was only when Pentasa was added to LDN in 2011 that we saw not only continued symptomatic relief but also labs that immediately improved and now are completely normal. 

Given the horrors experienced every time my daughter tried to go off any med including LDN and after the hundreds, maybe thousands, of hours I've spent looking for signs of true remission in clinical trials or from HW comments I suspect true spontaneous remission without meds or diet might be a fairytale...it has been six years, now, since she was diagnosed, and not once could she go off a med. Right now, she's not just on one, but two, meds so in this case, spontaneous remission is highly questionable, to say the least.       

It could, however, be pointed out that because she didn't try the Pentasa without the LDN, maybe the remission is all Pentasa...although it's a weak med that many docs won't even bother prescribing. She could try going off LDN to see what happens but won't, particularly because the LDN also seems to act as a prophylactic, at least for her, in warding off viral and bacterial infections.

lucky you - just checking: remissions meaning absolutely NO symptoms and normal labs? "Normal" meaning, for example, CRP of .7 or less? Or are you just going by symptoms?

No symptoms, normal bloodwork, normal CRP and ESR (my CRP and ESR have never been elevated, even when I was sick enough to be in the hospital). Normal colonoscopy, normal endoscopy, MR enterography that looked the same (or slightly better) compared with one from a few years earlier. That is what I mean by remission.

I could attribute it all to my special diet, write a book, and make $$, but I know all too well there's nothing special *I* am doing. And I also know all too well that, given my history, I'll get hit with a sudden onset of major symptoms again sometime (it seems to hit me hard for a couple months, then disappear for 5-7 years, then hit me hard again). Been that way for 20+ years.

And as I said, no meds.

Now, would I recommend no meds for others? No. I'm allergic to Flagyl, allergic to cipro, allergic to levaquin. Imuran made me sick, as did 6mp. I tried 5-ASAs for a while just for the heck of it, tolerated them fine, but found they did nothing, then saw the research that backed that up. And I'm not a candidate for Remicade or Humira because I have a chronic sinus infection.

Even people like me do tend to eventually develop stricturing and/or fistulas (but not always). I'd feel a little more comfortable thinking I was keeping that at bay by taking a maintenance med, but there's nothing agreeable to me.

I don't have it on me (I'm at work, and I don't get online at home). It was never above the reference range from LabCorp. I'm thinking it never went above 0.5.

However, I get the impression (and have gotten it before from your posts) that you have, and continue, to put too much emphasis on CRP. There have been studies done to find the correlation between CRP and disease activity. One would think as disease activity increases, CRP increases, and you could make a fairly nice straight line. But that is not the case. Whether comparing CRP to symptom questionnaires or to colonoscopy/radiology findings, there was nothing even close to a clean correlation. There have been many people with CRPs in the several hundreds who had no active disease found (even with very thorough workups). There have been people with severe active disease easily seen on colonoscopy and yet CRPs of <0.5.

There are people who are thought to be genetically incapable of even producing CRP. So no matter what, it's not elevated.