HealingWell
Search Close Search
☰

Just started Low Dose Naltrexone (LDN)

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/27/2007 9:58 AM (GMT 0)
4.5 mg, transdermal cream. Applied at 10pm (2 hours ago)

I just wanted to share my experience for what it's worth. Of course I have no reaction to share yet but wanted to give my baseline status:

LRQ/hip/lower back pain has subsided greatly over the past week.

Blurry vision comes and goes (Opthalmologist said no inflammation present)

Constipated.

Really, really tired.

This should be interesting. I may feel changes, I may feel nothing at all. The experiences with the drug are so unique.
Posted 9/27/2007 12:41 PM (GMT 0)
Good luck! I will be anxious to hear of your results!
Posted 9/27/2007 4:42 PM (GMT 0)
Hi killerzoey,

I hope this will work for you too, I started a week ago, and I already feel better. You know I was on prednisone this summer, it was my first med for Crohns, and when I was tapering prednisone, I got more pain the closer I was the date for the last pill. The pain was so typical the same that I had when a flare starts, I had an obstruction, fever, pain and bloating. I was so afraid that the problems would increase, so I was really glad when I could start my first LDN pill. Woke up the morning after - and knock on wood - no pain.
No pain in the morning, the afternoon or the nights for a week now.

I use 3 mg from the start. I may increase to 4.5 mg if I find it nessesary.....:-)

Good luck to you, I'm hoping with all my heart that this will help you!

All the best from Ingrid :-)
Posted 9/27/2007 7:54 PM (GMT 0)
Hi Ingrid

I'm so glad you're still feeling well. I hope you keep posting your progress here too. Yours is so much easier to analyze since you were more symptomatic when you started the LDN.

I didn't have any trouble sleeping after my first dose and no bizarre dreams, either.
Posted 9/27/2007 7:55 PM (GMT 0)
From my experience and what I have heard from others, good results in the first several weeks is just the honeymoon and won't last. The real results will take place sometime in the second month or later. The proof in the pudding will be after the third or fourth month.

Great idea to watch the eyes. My Scleritis of the eye was not caused by the LDN, but the stopping the steroids (Entocort).

Good luck! I hope it works for you.
Dave D
Posted 9/27/2007 8:08 PM (GMT 0)
Dave D, how did your scleritis come on? I KNOW my eye problems are related to my disease and I KNOW the Opthalmologist was wrong in saying I am just getting older and my vision problems are related. Could he have missed scleritis? I looked it up and though my eyes are not as red as the pictures they show, they are redder than usual and more teary. It scares me that his mis-diagnosis may cost me the very good vision I've always enjoyed.
Posted 9/27/2007 10:05 PM (GMT 0)
Thank you DaveD,

good to know that there is a honeymoon including the small boxes of pills, there is always a hook with a new relationship, and as always you have to question the efficacy....
....and as usual it will be a trial and error.....and maybe the relationship will end up like a maintenance drug, being used while waiting for something better...:-)

Anyway thank you,
and all the best
From Ingrid
Posted 9/28/2007 12:22 AM (GMT 0)
good luck!!

Posted 9/28/2007 7:26 PM (GMT 0)
killerzoey,
First it seemed like my bad eye seemed to get tired faster. Then I found myself closing that eye when I read. Next, it felt like there was a winker in it. Finally, it hurt and I just could not see as well in that eye, formerly 20/20. It was sensitive to light but it was never red.
I went to my eye Dr. intending to get the cataract removed I was also forming.
He dilated the eye and said there was a "Mass" in that eye and referred me to a retina specialist. Not good news. 20/200, legally blind
The retina guy said it may be Melonoma until he connected it to my Crohns, appearing in a small percentage of Crohns cases. Maybe it is connected, maybe not. It is an autoimmune disease and people get it who don't have Crohns.
When he said the treatment was Prednisone, I resisted, citing my past experience. "Then you will lose the eye," he said.

After 3 months of 80mg per day, the hole has healed and the retina has attached. 20/70 now. In order to keep from deailing this thread, I have started another Scleritis of the eye.
Dave D
Posted 10/21/2007 11:22 PM (GMT 0)
Thanks for that info, Dave. I am glad to learn you have recovered some of your vision, but sad that you had to dive back into the Prednisone to do it. How are you doing now?

I've been on LDN for nearly a month now and the ONE thing I am absolutely certain of is that my energy is increased. It came on kind of gradually so I hesitated to declare it for sure. But it's now been a few weeks since I've HAD to take my afternoon nap. Sometimes I don't even want to. Also, I believe I am sleeping better at night than before. I still have a hard time waking up in the morning, but once I do, I have a solid energy base. Not that awful draggy feeling.

So that's all good.

Regarding my Crohn's, I have nothing to report. I have a recent increase in rectal fullness and will talk to my doctor tomorrow about that. I have been trying more and more veggies and fibrous foods as permitted on SCD, so it may well be that I am not ready for those yet. I realize in thinking back, that this has been a sensation that has come and gone numerous times over the years. I just thought it was normal.

So I'm just realizing after sorting through my medical records that I must have Crohn's colitis, and that it is at the very least in the rectal area. You'd think the doc who typed that up would have at that moment given me some suppositories, no? I have had this sensation for so long that I am only now realizing it's not normal to often feel full like you are about to have a BM, or need to push hard just to fart (sorry - tmi?) When I had my baby I nearly prolapsed but they called it hemorrhoids. Also, after carefully dissecting my Prometheus IBD 7 Serology report, I realize that I have few markers for Crohn's but all of the indications of UC. So apparently I have Crohn's that manifests in an UC-like way. Not sure if this means that LDN won't help me; I know the Penn State trial was for typical Crohn's. But I am going to try to get something for the rectal inflammation asap, now that I (and apparently only I) have noticed the details of my medical records.

Just wanted to update on my LDN experience so far.
Posted 10/25/2007 8:58 PM (GMT 0)
killerzoey,

I am so glad you are feeling better, with increased energy. So am I, even if I still need a nap some days a week. But there are days that I do take a long nap, and it helps. I have always done that, because I like to stay up at night.

And my intestines are well, I do have normal BM's and the pain is gone. I just feel incredible fine, I am able to be a social being again, have missed that part for a year now. :-)

And by the way, people with U.C, colitis ulcerosa can use LDN too, np. I know a person doing excellent on LDN, he has gained 15 stones, no more D, no more pain, using asacol and LDN all the time. He started to use LDN in july 2007.

With all the best from
Ingrid

Posted 11/4/2007 9:52 PM (GMT 0)
So glad you are doing so well, Ingrid!

I believe my blurry vision is abating. I still have some, so it's hard to say 100%. But it seems like there are fewer times each day when I have to squeeze my eyes shut to clear the cobwebs. Still feeling better than before! I had no idea how fatigued I had been!
Posted 11/5/2007 11:05 PM (GMT 0)
I started LDN at the end of September, so it's been around six weeks. I do feel better, but think I'll wait until it's been at least two months before I pronounce the final judgement on this treatment. So far, I think it may have contributed to my insomnia, but I was afflicted with that anyway due to stress (mostly marriage related). I'll give a thorough report on my progress (or lack thereof) next month.

Hoping for the best,
Robert
✚ New Topic ✚ Reply