just started low dose naltrexone...anyone else taking this?

That's wonderful that your GI was open to prescribing it for you. I asked my GI about it and she didn't seem too familiar. Unfortunately, I haven't seen too many people with UC using LDN, more people talking about it on the Chron's board. As with every medication, it seems like some do great and others have bad side effects and have to stop it, others don't see any results.

Figured I would update this periodically, in case anyone is considering this treatment. No noticeable pro or cons re: crohns/colits this week, but something interesting did happen. I have had a weird rash on the back of my arms for about 6 months, not eczema or psoriasis exactly, but it never went away. After less than a week of ldn it's gone. Weird. Not sure if it's the cause, but it is interesting. In general my energy level is high, and I feel good. Fistula pressure is minimal.

I'm going to do a candida cleanse in conjunction with this, as I have read it assists the ldn.

thank you for the info j_liz, please keep me posted on your progress...hope it helps you this time!

I seem to be going in remission. Yay! I think it was the coconut oil I started though, not the LDN. It was right after I started the coconut oil that I started having formed stool. Coconut oil is supposed to be very beneficial for many things, UC and candida being on the list.

I just upped my LDN to 3 mg a few nights ago. So, it's just been over a month that I have been on LDN.

I am usually very frustrated, or should I say angry, when the people in the medical field drop the ball. This time it was my GI, he never got back to me about the blood test results for the 6-MP. However, this time it was a blessing. If they ever call me I can tell them that I appear to be going into in remission. I do need to schedule the colonoscopy to remove that polyp, it sure would be a blessing if everything looked good.

I am up to 2 t. I herxed with it, so am increasing slowly. On the bottle it says you can take 3-4 T. I have read many testimonials, many take it right off the spoon like I am, some cook with it, and some use it as a moisturizer, some do a combo. I am using it as a moisturizer, too. I have really dry skin and hope it helps.

I don't cook much at all due to fatigue, but I will replace the vegetable oils when I do. I need to learn how to do that. I am going to start using it when I make my granola. For that I found you measure it then melt it (it is a solid when it is below 76*).

Will research on the Crohn's board as well,but read that LDN will counteract NSAIDs, which Mesalamine/5ASAs I beleive fall under the category of... astar/j_liz- did your doctors mention this?

thanks!

My LLMD and the info on LDN I read said what astar said, you can't take narcotics with it. I hope to get off the Lialda in the near future anyway.

Astar,

So glad your GI doctor prescribed the LDN. My gastro told me "it's not standard of care" bs line. He wasn't even open to it.

But I did finally get it prescribed by an osteopath. I took the 4.5mg dose right away, as is suggested by the Jill Smith studies.

I found I had an allergic reaction to the avicel filler and had to stop after 2 weeks and be put on the hypo-allergenic formulation.

It's been 3 weeks now and I am still heavily bleeding with my UC.

I spoke with the pharmacist at the compounding pharmacy, and they told me that some people have an absorption issue with oral LDN, and do better with the Transdermal application, so I will be starting the transdermal LDN today.

I hope it starts to work.

Do you also have the reactive arthritis with the ulcerative colitis?

Because, from what I understand, in time it will also help with that and any other joint and fibromyalgia related pains.

Good luck to you, and please keep us informed as to your progress.

 

Thanks Insofla, good information! how did you know the avicel was an issue? interesting about the transdermal, can they do that at any compounding pharmacy? And thanks for clarifying about the opiate/alcohol.

I have in the past had issues with arthritis, but it would randomly spring into one knee, or my ankels, wrist, etc, and than move, but I haven't had that in a long time.

Good luck to you too, and please also keep us posted on your experience!

I just wanted to say I am starting on the LDN today.  I mentioned it to my doctor and he gave it to me.  I really hope it works.  Seems hopeful.

How long does it take to work? I took my first pill last night and felt worse?

Peace and Harmony, so glad it is working for you too! Thanks for posting, I was hoping you would follow up.

Sally, I was in a really bad flare when I started than made it worse with a candida cleanse, so it took me a few weeks to see any progress, though I did have a skin rash that had been there a long time that went away within days. When it started working for me, it was such tiny increments that I was skeptical. A little less blood. 10 trips to the bathroom instead of 12 etc. I slept well, but had major fatigue really until about last week (so first month and a half) I assumed it was the ldn making my immune system do some heavy lifting. This week my energy level is coming back to a normal plateau. I am now going to the bathroom about 3 times, mostly solid (ish) no more blood...and without prednisone. Wow.

People say it can kick up viruses/allergies etc at first. I did get a weird cough and a rattle in my chest (not anything major, but I noticed it because I was hyper aware) that has mostly backed off (but comes back some days. Again, I think my body is fighting things that were dormant. It's like the ldn starts uncovering layers of underlying illness and addressing them as far as I can tell)

For some people, they say they feel good right away, others it can take 3 months or even more. Commit to it for at least 2 to 3 months before you rule anything out. Just take it along with your other meds and supplements, and give it some time. Best, Amy