User loginNavigationActive forum topicsRecent blog postsWho's onlineThere are currently 0 users and 0 guests online.
Feeds your need
|
GM-CSF for CGD Colitis? My son, now 4, was diagnosed with CGD related Colitis over the summer. He has been on Prednosolone for a while now (30mg). His GI feels we need to taper off the Pred and ramp up on GM-CSF. Has anyone heard of this tx? what is the success rate? side effects? The dr. tells me he has had great success with getting the Colitis in remission with this option. We are supposed to start the therapy next week. It will consist of daily injections for the first 2 months and then go to injections 3X/week (similar to acctimune). Any info would be much appreciated. I'm very nervous about putting my little guy through this, but if it increases his chances of being healthy, i'm willing to try anything. Kiron
Submitted by kiron on Wed, 2007-10-10 00:53. categories [ Medication and Treatment ]
login or register to post comments
I tried the Luekine injections 3 times a week for a month and a half to treat my colitis. It didn't work and the injections made me feel like I had been hit by a truck. When I told my doctor how bad the injections made my bones and joints hurt, he prescribed Vicadin. The large doses of prednisone were the only things that helped my colitis. Unfortunately I know am one step away from osteoperosis, my adrenal glands never came back online as good as before, I get daily headaches, I have not been able to lose all of my weight I gained, and my blood pressure is a little high. Oh, and I now have cataracts starting in both eyes. I don't mean to scare you, but you NEED to stay away from long term use of prednisone. I was on 60mg a day for 2 1/2 years and they destroyed my body. I am only 33. I ended up getting a colostomy so I could attemp to enjoy life again and not be a hermit. The colostomy isn't the funnest thing in the world, but I am now having a decent life again. Plus I can tell my boss and friends that I am so full of crap that the doctors had to add an overflow bag :) I hope this helps. Ben Mary/Sue, I'm so sorry for the delayed response I have been busy trying to keep Jaden healthy and so haven't had a chance to check the site in ages. We started Jaden with Leukine (GM-CSF's brand name) shots 3X/week end of last year or first of this year (i can't recall). I don't know how much they have helped because Jaden has also had to be on Prednosone. Once the steriods are stopped, he seems to relapse. We also tried Entocort, which is a steriod which is in capsule form and when swallowed allows for a much more localized response and is supposedly only absorped in the gut so you don't see the normal steriod side-effects. In Jaden's case, his body did absorb a lot and he did have the bloated face and irratability that goes with steroid use. However, Entocort did keep him healthy (although when we stopped Jaden developed high fever from the steriod withdrawal and we had to put him back on prednosone and slowly taper it off). Jaden was also hospitalized twice this year with high fevers--we never figured out whether it was a colitis episode or a CGD episode. He is once again having a bout with high fevers and had undergone all the blood and stool/urine tests. We're waiting to see what the results point to. For the long term, I am actively pursuing a bmt for Jaden and just trying to figure out the right facility. We have had consults at Stanford, Children's LA and UCSF here in CA. We were leaning towards UCSF, but I've heard so many good things about Texas Children's, i figured it didn't hurt to check them out as well. It is very stressful seeing Jaden sick all the time and not able to do all the fun summer things his older brother can do. I'm hoping with the bmt, Jaden will have a greater quality of life and can resume being a "normal" little boy.
 My son is in the hospital for ulcerative colitis and I asked about the GM-CSF that you had mentioned. I am anxious to hear if you started it and how it is going, the length of time it takes to "kick in", etc. The doctor here in NYS said it is experimental and he doesn't know of any trials going on. Any input would be most appreciated. Sue Van Ness Hi Kiron, I hope that your son is doing well and that his colitis is gone. Quite a few CGD patients have tried Gm-CSF for colitis and I'm curious to know if it has helped Jaden? How is he handling the injections? Please let us know how he's doing. I hope he's doing fine. Mary Hurley |
|
I tried the Luekine injections 3 times a week for a month and a half to treat my colitis. It didn't work and the injections made me feel like I had been hit by a truck. When I told my doctor how bad the injections made my bones and joints hurt, he prescribed Vicadin.
The large doses of prednisone were the only things that helped my colitis. Unfortunately I know am one step away from osteoperosis, my adrenal glands never came back online as good as before, I get daily headaches, I have not been able to lose all of my weight I gained, and my blood pressure is a little high. Oh, and I now have cataracts starting in both eyes.
I don't mean to scare you, but you NEED to stay away from long term use of prednisone. I was on 60mg a day for 2 1/2 years and they destroyed my body. I am only 33.
I ended up getting a colostomy so I could attemp to enjoy life again and not be a hermit. The colostomy isn't the funnest thing in the world, but I am now having a decent life again. Plus I can tell my boss and friends that I am so full of crap that the doctors had to add an overflow bag :)
I hope this helps.
Ben