Thinking of a trial of Naltrexone (LDH)
Just wondering about the LDH and appetite. One thing about the 6mp is my daughter never gets hungry and has to make herself eat, 6mp does greatly suppress appetite. I have read that Crohns attacks your gut, an autoimmune disorder and sees food as an invader since part of being an autoimmune disorder. One thing the 6mp has done is helped her with her cramps somewhat when she eats. I was just wondering if you have to follow a more strict diet with LDH than if you are maybe on other meds since it is not an immune suppressant. Caitie is 18 and when she goes out with her friends, which is rare nowadays, but she pretty much eats within reach whatever she wants, but no popcorn, salads, milk products. Before the 6mp most everything she ate would cramp her but we did find she was impacted due to the swelling from an X-ray later so now I really am not sure if it was the food that caused it or just the fact that she her digestive tract was so slowed down due to inflammation.
Sorry guys, just lots of questions. My mind races at night and then I can't wait to get to the board and check out other's experiences. I would love to try the LDH, along with something else probably. From all I've gathered, it doesn't seem the LDH alone will keep Caitie's symptoms in check.
First off its LDN (low dose naltrexone). Some have had luck with this, but not all. I have heard you need to start at a lower dose and work your way up. I would assume once they get feeling better their appetitite improves,
If your daughter is doing well on 6mp, why rock the boat?? In other words, why fix what isn't broken. I think the cramps were from the inflammation and impaction. When the stool gets backed up like that, it hurts!! But sounds like she has had some improvement then on the 6mp. Good luck!
Response from margie:
She's had improvement from her cramping with 6mp but she has no energy and no appetite and the side effects of hair loss scare her. She has had to drop out of college and quit her part time job because of having no energy. Some of this may be attributed to being anemic though and she takes Ferrous Sulfate, two a day, but I am not sure how well her small intestines are absorbing it. They are now talking about IV iron or iron shots. This may help the energy. Crohns is sure a balancing act to say the least.
Margie the fatigue is from the anemia and just having the disease itself. I am in remission, but fatigue is with me daily. I always take a nap before I go to bed everyday. For the hairloss have her add in Folic Acid to her med mix. I take Asacol and it causes hairshedding too, and the Folic Acid has slowed it down a ton.
As for lack of appetite I have a VERY SMALL appetite too. I eat at 5:30 am and then at 10:30 am and can go the rest of the day without eating anything. I think its just part of the disease and for me, having this disease so long, I think part of it is the fear of what food can sometimes cause me to feel.
How long has she been on the 6mp? I think you need to give this med a chance. Its working for her. No guarantee the LDN will work too. Also, one other suggestion, not sure when she is taking the 6mp, but I did better taking it at night. I slept thru most of the side effects. Hugs!
Like Nanners, I'm wondering how long your daughter has been on 6 mp. It might need more time to work.
LDN did great things for my daughter and eliminated all her symptoms, but it certainly did not increase her appetite...in fact, just the opposite. I'm not sure how effective LDN would be with an immunosuppresant like 6mp. Will try to find time to look into this question - or maybe somebody else on HW has the answer.
If they are considering iron infusions, she must be anemic, so they might have her bouncing back in no time! I hope the iron does the trick.
Have they checked out her B12? If so, what is the number? The reason I ask is because labs tend to display even a low number like 239 as within the "normal" range, but "normal" doesn't mean healthy. Anybody with B12 lower than 300 can be assumed to be deficient, and the fastest, most effective way to supplement is via a B12 shot.
If they haven't checked out her serum folate level, then it can be checked, to see whether she needs folic acid.
Thanks for all the tips, really helpful.