Had to stop LDN

[Bluezz]

I am new here and thought I would find out more about LDN from those of you who take it. I have learned alot in the short time I have been on here!
I have been on Cimzia for about 5 months. I had my shots 2 weeks before getting LDN @ 1.5mg to start a 2 week course. The first night I was only expecting loss of sleep and the vivid dreams. What I got was extreme D and abdominal pains, horrible cramps, sweats, nausea and loss of sleep! Yes,
all that I use to experience before my colostomy for Crohn's last year. I decided to go 2 more nights like that, thinking it would wear off. But I was so sick all day yesterday, I had to stop it last night. Today I still have nausea and D but the pain is now dull on my right side. Plus last night I only got up 4 times instead of 10. I guess for me, Cimzia and LDN are not a good mix!
Now I am not sure what to do??? Does anyone have any thoughts? I know it is a personal decision but I just hate the thoughts of being sick again

Thank you for listening...
Karen

 

[BosnianboyCD]

Karen, I'm sorry to hear about your response to LDN. However, Cimizia is an immunospressants where as LDN makes your immune system stronger, or restarts it in a way. You won't get the same effects from LDN while on Cimizia. Just a thought. Perhaps you should try the LDN without the Cimizia. Of course you should ask a Doctor, I'm just giving you my opinion. Good luck.

 

[Bluezz]

Hey BB,
Thank you so much for the input! I went to your threads because I knew something was wrong the night I took it and you were reporting your symptoms. I related
I knew it may not work well with the Cimzia but I didn't expect this to happen.
The doctor is not a GI and is going off the website information I gave him. So not sure he can help with the decision, but I will try. I appreciate your opinion very much

Karen~

 

[JJOM]

Karen, I'm sorry to hear about your response to LDN. However, Cimizia is an immunospressants where as LDN makes your immune system stronger, or restarts it in a way. You won't get the same effects from LDN while on Cimizia. Just a thought. Perhaps you should try the LDN without the Cimizia. Of course you should ask a Doctor, I'm just giving you my opinion. Good luck.

I thought that "we" were now leaning towards the idea that LDN is actually an immune suppressor/regulator; not a 'booster'?

 

[Kev]

Yes, it would appear from anaecdotal info posted here by others who've had contact with experts in LDN that it too is an immuno suppressor, and that the theory postulated by me and others (but primarily me, I was the culprit) that LDN worked differently was in error. Mea culpa! I would suggest trying to contact Dr Jill Smith or other experts in LDN to see if there is any potential issues with Cimzia (isn't that the newest biologic?) and LDN being used in close proximity (timewise). The issues around having diarhea and abdominal pains from LDN doesn't sound like anything anyone has reported about the drug Naltrexone, and one of the reasons I was eager to play guinea pig back in 2007 was that LDN (low dose naltrexone) is considered virtually risk free of side effects. It is conceivable that even as low a dose as 1.5 mg might trigger akin to an allergic reaction in someone who for whatever reason was sensitive to the drug, but I've never heard of anything like that on this forum, in Dr Smith's original write up, in the background info on full dose usage of Naltrexone, or on the lowdosenaltrexone.org forum website. But that doesn't mean it doesn't or can't occur. My kneejerk reaction is that 1.5 mg is too low a dose... but who knows. A two week course? I dunno... it sounds as if this is perhaps a very cautious, perhaps overly cautious to the point of failure approach to LDN therapy.
Again, I think there is a dreadful lack of experience/expertise in LDN, which places both potential patients and the treatment regimen itself in jeopardy to one extent or another.
If it were me, and I wanted to get well AND do it via some method that wouldn't cause me worse issues down the road, then I would experiment. Curtail all drugs to see if my symptoms improved, then re-start the LDN treatment at a dosage and duration like that in Dr Jill Smiths original study. If it works, you're laughing (believe me, life is way better on LDN, at least for me... but it wasn't a cake walk to get there). If it doesn't, you have my deepest condolences PLUS the personal satisfaction that you tried your best to get LDN to work for you. You just may have to pay with some diarhea and cramps to get to that point, but in the overall scheme of things, what is big D and cramps to one of us crohnies? Best of luck whatever you decide.

 

[Bluezz]

Kev,
Yes Cimzia is the new one. It gets delivered to the system differently than Humira and Remicade. It goes by a PEG system. Where the other two are delievered into your entire system. I was on Remicade for 8 years and after my colostomy, I developed Lupus symptoms. I had a 50/50 chance it would go away if I stopped the drug. So far it has.
So after the surgery, I did not have Crohn's symptoms. I went on Cimzia after not tolerating Methotrexate, for the Lupus.
As for the dose...I was only starting at 1.5mg for 2 weeks then up to 3mg for 2 weeks and finally to 4.5mg. He was following the website guide lines. He had hoped he may get good proof from my experiences to try it on his arthritis and other patients. He did sound hopeful.
I am the one in the crowd who seems to react negatively to most drugs as well... unfortunately!!
Crohn's symptoms for me always= surgery, this is why I worry to let them go on for any time length.
Funny not much intestines left to gamble with more blockages and surgery.
But on the otherside, the rest of my body is suffering from the "big drugs" Oh what a tangled web we weave....
I have read your posts and respect your writings
There are two things I did not take into account with regards to LDN.. Candida and diet. This may be where the problem came from.
Thank you for your time and responding
I will have to backtrack and look over things again. LDN would be my choice though

Karen

 

[Kev]

Karen

I stumbled upon the info about candida while researching LDN on the lowdosenaltrexone.org forum before I started taking it (LDN). When I questioned both my GI and my GP about candida, essentially both dismissed it as anything they would or could help me with... I have since heard that most mainstream physicians don't consider it worth attempting to deal with, akin to being asked to cure the common cold.
However, I DID have the telltale long strands within my saliva that indicated I had some form of candida in a flourishing state (anaedotal info from the LDN forum). This caused me to fear that LDN wouldn't work for me. Regardless of my fears, LDN did work, and, as a sidenote, those telltale long saliva strands dissappeared too. For what that's worth. I wish I knew the rationale or reason behind the variation of doses for LDN. I've seen 1.5, 3.0 and 4.5 mg figures tossed around before, but never the info behind why?
Is it caution? Ramping up like steroids or AZA? Is it based on a persons size/weight? Is it a carry-over from the original trial, and if so, does anyone know why they stepped it like that? (it would seem evident that, if the trial started everyone at 1.5 mg, then it is not size/weight considerations, but mostly caution.) I mean, there they were, trying LDN for the 1st time, playing guinea pigs with patients... but if eventually all patients went up to 4.5 mg, then doesn't that indicate that is the effective dose? Problem with all of this is that it is purely conjecture, speculation. The only hard fact I can offer is that I've taken 4.5 mg of Naltrexone daily (eeer, nightly) since November of 2007 and so far, no side effects... except for that prehensile tail I've grown, but that comes in soo handy, especially for a crohnie. One can wipe their bum without putting down the novel they're reading in the loo. OK, kidding bout that last part... As if I could read a novel.

 

[D Bergy]

Often, I have heard similar reports of problems with LDN and it turns out it was compounded wrong with a Lactose filler. Make sure yours does not contain lactose.

Only buy it from one of the pharmacies listed on the www.lowdosenaltrexone.org web site.
It is often compounded wrong, and there is no reason not to use the approved pharmacies.

It is hard to know how LDN would interact with another medication.

Good Luck

Dan

 

[JJOM]

Kev,

I agree with your point about the dose. It is another 'unanswered' question about LDN.

LDN has helped me, but I still don't know why. As for dosing an interesting thing happened recently; My original script (LDN) was filled in 1.5mg capsules for the 1.5-4.5 ramp-up.

One night, a couple of weeks ago, I was popping my night pills, and had one of those 'brain' moments and I couldn't remember if I had already took the LDN? After some thought, and not wanting to miss a dose altogether, I decided to take a 1.5mg cap left over from my previous script. If I did take the 4.5mg pill, I would have added 1.5 on top (I preferred knowing I either took 1.5 or 6mg, instead of the possibility of 0 or 4.5).

Later that night it hit me (the memory) that I did take the 4.5 pill; so I infact took 6mg that night.

The next day was one of the best days I had in years. I went back to taking the 'prescribed' 4.5 for about a week, and then again took 6mg for a few nights in a row. I think I respond better to the 6mg (could be a simple metabolism/absorption issue).

It would be nice if we had more information...

 

[D Bergy]

I would go with what dosage works for you. There are probably a hundred reasons one person would need a different dose than another.

We are all different, and we need to tailor our treatment to account for the differences.

Good Luck

Dan

 

[Dekar]

JJOM, I would encourage you to play around with it. Just do blood tests to make sure its not causing any bad side effects doing 6 mg. Remember the dose given to alcoholics is 50mg and the liver damaging dose is 300mg.