Post Edited (GregB777) : 12/27/2007 7:31:02 PM (GMT-7)
I stopped the naltrexone because I hit a plateau with the curative results. It cut my average daily bathroom trips from 15 or 20 down to 5 or 6. I stopped bleeding daily but still showed signs of clots at least once a week. The big “D” tightened up and I started a solid output…all very positive results….but that is where it stopped. My blood work still showed major deficiencies in key areas (thus even though things had solidified my absorption was still low) I did continue to lose weight, but at a little slower pace. I still had major cramps and pains with each trip to the bathroom....and that has not stopped even now with Humira.
I have been out of remission with my crohns for over two years now, and I am getting dangerously close to being in crisis on my weight. I am 6’1” and some days go as low as 170. For me 170 is terrible…hips show, collar bones and sunken cheeks make me look like I belong in one of those fright movies. The arthritis is worse now than two years ago. The Humira has done a good job of stopping my weight decline and I hope to level out at 180. It has also helped my absorption….I am no longer in the anemic zone.
I think I am one of those exceptions for medicine….so far the only thing that has worked for me is Tysabri.
I do not knock Naltrexone….it just didn’t do enough for me….
Hi jellybean -
My 12 year old son is now participating in his second clincial trial in 2 years, this time of Humira for kids.
Many clinical trials now do not use placebos when testing new meds for serious illnesses like Crohn's and AIDS. Instead they may pit two different meds against each other or two different doses of the same med. Not always of course so it is important to be clear about this when considering whether to participate in a trial.
It's also important to be clear about what the protocol is if you fail to respond to the med: how long it takes before they decide you have failed, whether they will increase the frequency or dose at that point, etc.
I would second the recommendation that anyone who has failed remicade and humira strongly consider elemental nutrition as a treatment option. It can be combined with other meds and, while expensive, can be done with OTC products now like ensure and boost so you do not have to have a doctor's prescription. In children improvement in symptoms is usually seen in as little as 2 weeks if a strict regimen is followed. This means no solid food at all - only water and the formula. Some doctors allow a small amount of chewing gum, one 8 oz serving of clear soda and a few pieces of hard candy but if you are in serious trouble with extensive bleeding and weight loss then the strict regimen is most likely the one to be recommended. It should not be undertaken without medical supervision, especially if you are severely underweight/malnourished. A few children are able to attain and maintain remission on partial elemental feeding but they have usually started on complete elemental and then gradually added foods back in, avoiding foods that appeared to make symptoms worse.
My son has done 2 rounds of elemental feeding in the past 2 years via NG tube. Both times his CD improved but he got sick again as soon as he started solid food so we have ended up on both 6-MP and Humira.
Post Edited (rlsnights) : 12/28/2007 10:00:46 PM (GMT-7)