the picture Camille sent in:)
Meet Camille:
Diagnosis of UC didn’t come until I was 40. I took two rounds of Accutane in my 20s, and my system hasn’t been the same since. I believe this is one of the main causes of my UC. I had a bad flare 3 years ago that took away my energy and fitness. I can’t wait to feel strong again! My goal is to be off all meds with the exception of low-dose naltrexone. I have had UC for many years and taken a great variety of meds, but I really believe prevention is the best cure through diet and lifestyle for me.
Some more about her:
I love to ski, which is a bit of a problem when you live in the western suburbs of Chicago. I grew up in Colorado.
I have two boys and a husband who love sports, so we have an active household. Football is currently the focus of the season, and we have the tv on with games a lot. I am focusing on getting back into shape, so I try to find time to workout. Watching my athletic kids and all those athletes on tv is inspirational!
Symptoms:
In remission, thanks to a paleo diet and low dose naltrexone.
Help Finding Imuran
I was in the process of being weaned off imuran/azathioprine, when I went to refill a prescription and found that the supplier hadn’t “supplied”. This was 1 1/2 weeks ago. I was going refilling through Walgreens pharmacy. The pharmacy still has none of this drug. Does anyone know of a pharmacy that does? I live in the western suburbs of Chicago.
I was down to 150 mg/day from 400 a while ago. Has anyone else had experience getting off immune suppressants?
When I was first diagnose, I had a horrible GI doctor. After a colonoscopy, he told me I had ulcerative colitis and to take the meds he had prescribed, which was Asacol. I asked him to tell me more about what I had, and he said “you have ulcerative colitis,” and he walked out of the room. I never went back. After eliminating my symptoms with Asacol in about 4 months, I stopped taking the medication. Three or four years later I started experiencing symptoms again. I told my OB/GYN about my dilema and he recommended a different GI to me. That was the best recommendation ever. I still see him to this day. He put me on Colazal and I cannot remember what else. I did well, but eventually stopped taking that medication.
Then, 3 years ago, my symptoms came back and for months I tried controlling them with diet alone. When I finally went to my GI he was stunned at my condition and said that 95% of my colon was diseased. It had never been more than 25% before.
What I didn’t know was that the longer you let the symptoms go, the further up your colon the disease travels.
I have often thought of how helpful a little info like this would be to other sufferers. There is very little explanatory info out there that isn’t produced by a pharmaceutical company. Anyway, I was on predizone, cort enemas, Azulfadine, then they added a synthetic steroid, which made me blow up like a balloon. They also added imuran.
About this time, I went to visit my sister’s physician in Colorado, who also had UC. He added low dose naltrexone to the mix. Since taking this, I have noticed that I am more resistant to illness and my rotten hayfever that required antihistamines 5 months of the year is almost non-existent. It resets the immune system while you sleep, working with the lymphatic system. For anyone with an autoimmune condition, this is a fabulous solution to a difficult problem. It must be compounded, but it is cheap (which is why many doctors know nothing about it and why no pharmaceutical companies are researching it or promoting it). I pay $30 per month at my local pharmacy for it. If you search on low-dose naltrexone, you will find lots of information.
This physician is now in Oregon at Ventana Wellness, but I still “see” him through phone consults. On a side note, my GI is convinced that the imuran put me in remission, but my Oregon physician and I both KNOW it was the low-dose naltrexone. We’ll let my GI think it was the imuran, though, because it makes him feel better and he is a wonderful man.:)
Medications / Supplements:
Currently on Azulfadine, folic acid
, low dose (4.5 mg) naltrexone (LDN)
written by Camille
submitted in the colitis venting area
Diagnosis of UC didn’t come until I was 40. I took two rounds of Accutane in my 20s, and my system hasn’t been the same since.
I just got a prescription filled for 50 mg and had no issue. Regardless of cause glad you are doing better.
Ditto what Tim said about glad you’re getting relief. Pretty interesting too that there’s been a couple of stories recently on LDN from other UC’ers with positive results. Great to hear.
FYI too, there’s a webpage for reviews on LDN, I just checked it and didn’t see a review from you there yet, so when you get a minute, please add your thoughts on it to that page. here’s the link: https://ihaveuc.com/low-dose-naltrexone-ldn-reviews/
Best to you, and keep us posted.
i thought it wasn’t possible to take ldn with Imuran because one suppresses the immune system and one kicks it in. i am on 6mp plus trying to wean off of pred (again), but i would love to try the ldn and get off of all this mess!
I live in Michigan and pick up my prescriptions at Walmart. I am on Asacol and Imuran (I was diagnosed in my 40s too) and I have never had a problem getting my meds. I manage my ulcerative colitis with diet but it is my understanding that meds are not optional. I do not get on and off of them depending on whether or not I am flaring. I asked that specific question before I started taking Imuran and I asked it again at my last appt because I feel great. I will be on them for the rest of my life unless I have my colon removed.
Hope you find what you need in the med dept. The fitness will follow.
Fitness has been my escape and helped me at my lowest points so I get that. I stay in the gym even if I have to pop a squat between sets…:-)
Thank you fso much for your post – I have been prescribed Azathioprine and 40 mg Prednisone ( to taper off in 8 to 10 weeks), along with 2 antibiotics for CDif and CMV ( picked up while hospitalized). Doctors want to add Remicade or Humira (tried Humira before alone -but it failed). Two friends did Remicade infusions for Rhuematoid Arthritus – both got shingles and had to stop.
I have an appt. at Mayo clinic and will ask about low dose Naltrexone.
CVS pharmacey in Illinois has been able to get all the meds I have needed for UC for the last 3 years. They also have a specialty pharmacy- via phone that handled the Humira . I am not sure about Naltrexone. I know that it is not used by many docotors because I had a client who was prescribed this and has to get it from a compounding pharmacy in Chicago via the mail.
Al the best to you and your family as you continue to do what os right for your health.