Azathioprine or LDN

[keriberry]

Hi I am new to the forum and would like to tell my story and get some advice. I am currently a 19 year old female sophomore in college and was diagnosed with Crohn's Disease this past summer of 2012. I began coming down with my symptoms my senior year of high school and finally gave up and saw a doctor. I went through a colonoscopy and was told I had crohn's and chronic anemia. I was put on 6 tablets of Asacol and my symptoms quickly got better and was down to 3-5 stools a day. My doctor wanted to get it down further and increased my dose to 12 Asacol a day but that made my symptoms worse and i was dropped to 9 tablets which I am currently taking per day. I was put on prednisone for a small flare and just recently finished my taper. My symptoms have started to come back and I just had a blood test taken and it came back with my SED levels still really high. My doctor has mentioned putting me on Azathioprine. However, my dad has been researching LDN and it seems like a wonder drug. My parents want me to make the decision but I'm having a really hard time deciding between sticking with my doctor or exploring LDN. I would really appreciate your opinions as I am still very new to Crohn's. Please help!!

 

[ctrl z]

Hi, keriberry!

I understand it being difficult to choose. I've never been on aza but am currently taking LDN and I feel that it is helping me. My symptoms were mild prior to starting LDN but there are others here who were in worse shape than me when they started LDN and are doing better.

The LDN subforum has lots of great information.

I hope you stick around and keep us updated with how you are doing :smile:

 

[David]

Hi Keri and welcome to the community I'm glad you joined.

There's a 3rd option. How about both? From what I've read, they can be taken together. And when it comes to Crohn's disease, I'm a big fan of throwing the kitchen sink at it. Traditional western medications, alternative medications, dietary changes, lifestyle changes, etc.

Get the inflammation under control and then into deep, stable remission (not just clinical remission). Get to the point where they can't find a single thing wrong with you even on colonoscopy. That should be the goal of every Crohnie.

We're here for you.

 

[Jmrogers4]

Yes, I'm with David, my son is 13.5 and on LDN now but his doctor recommended he stay on aza while transitioning to LDN although both of them take some time to work. Aza takes a few months to reach theraputic levels and you will need to have your liver checked frequently for toxicity but it had my son feeling really well. LDN can be really difficult to obtain, not that many GI's are willing to prescribe it so it would not hurt to take aza while pursuing LDN. My son just had a colonoscopy last week after 7 months on LDN and it showed healthy tissue! No pain, normal BM's. GI said it did not look anything like a Crohn's patient.
Just remember to try and keep your options open so many things that work for one person do not for another and it takes a little while to find the right combination but the number 1 goal is to get the disease under control.
Welcome to the forum and I hope you find what works and what you are comfortable with soon.

 

[keriberry]

Thanks for all your advice. However I have read that you should not take Aza and LDN together because they are both immunosuppressors and can react with each other. Has any one else heard this?

 

[David]

I haven't read that. I haven't read that LDN is an immunosuppressant either. My understand is it is an opiate antagonist and also reduces inflammatory cytokines. But if you have reputable data showcasing otherwise, I'd love to read it please!

 

[Jmrogers4]

Haven't heard of anyone having problems and I have not seen in any of my research the biggest issue with LDN as there just has not been a lot of research done but I did find this site that says what drugs not to take with LDN http://www.webring.org/hub?ring=col...90oY%23%00%FC%D6%BA%D9pU9%1A%D9%ED%8D%7CG+;go
I could be completely wrong but LDN is not an immunosuppresor like Aza/Remicade/Humira etc. but makes your immune system work better for lack of any better way to describe it.
I'm sure someone else will be along shortly who can understand the trials that have been done better then I.

 

[keriberry]

You are right, I just reread it and it is not an immuno supressor! I do not remember where I read that you could not take it together, maybe my mind just read a different word similar to AZA and thought it was AZA. Again, I really appreciate all your input and support!

 

[keriberry]

WAIT! I found it!
"Because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS [and other conditions] further suppress the immune system, LDN cannot be used in company with Steroids, Beta Interferon, Methotrexate, Azathioprine or Mitozantrone or any other immune suppressant drug. If there is any doubt, please submit [to your doctor] a full list of the drugs you are presently taking so that their compatibility may be assessed."
This came off of a word document that was sent to my Dad from a women who helps people find doctors who prescribe LDN in their area. This was on a document named "What NOT to take with LDN."

 

[Jmrogers4]

I think a majority of people are taking the combo and weaning off aza while waiting for the LDN to kick in but look through this link, http://www.crohnsforum.com/showthread.php?t=19495 there have been a couple people who contacted the doctors involved in the trials about taking either 6mp or aza with LDN and were told it was okay.
In the end though you have to do what you are comfortable with. I think it is great you are studying all your options and taking control. When my son was first diagnosed all I wanted was for the doctor to give him a "magic" pill and fix him.

 

[David]

I don't really trust that word document. In my opinion, there is no evidence (that I have read) that LDN STIMULATES the immune system. Normalize it? Sure. But I don't think that is the mechanism is action. Of course, they don't know the true mechanism of action as of yet so who knows for sure. As Jill Smith or her team said in one of their studieshttp://www.crohnsforum.com/showthread.php?t=31142:

We hypothesize that the endogenous opioid system is involved in inflammatory bowel disease, and antagonism of the opioid–opioid receptor will lead to reversal of inflammation.

With everything said, if I was in your shoes I would probably try LDN alone without azathioprine first. But I would make sure all my blood and fecal calprotectin levels were monitored VERY closely to make sure it was working.

 

[keriberry]

I just took some blood tests and a c-diff test and then I will be put on AZA and prednisone and then later this summer once I am under control I will be looking into LDN, my doctor has even said he may consider trying it. Thanks for all your help!

 

[Jmrogers4]

Keep us posted with how you are doing. I recommend keeping a copy of your blood test results for yourself. It was easier to look back and see where everything was as just last week Jack's GI was suggesting putting him back on Aza and I looked at all his previous blood tests and the latest on LDN and they look the best they ever have so I told him I wanted to keep him on the LDN for the time being.

 

[David]

As azathioprine can take a few months to kick in, are they putting you on any sort of bridge therapy? Maybe enteral nutrition?

 

[keriberry]

Yes, I am staying on my Asacol until it starts to work and will be put on prednisone as well. And my mom keeps all my medical records so I definitely have all my blood test results!

 

[keriberry]

It turns out my c-diff test came back positive and I am now being put on Antibiotics.

 

[Jmrogers4]

Sorry to hear that unfortunately having crohn's can make you more susceptible. Hope you can get it cleared up quickly

 

[missylock42]

OK i started takin aza in jan and as long as ur doctor does blood work before u start is not bad, i feel alot better then before , and i read up on it and was scared but everyones body is different, i support u, u can write on my wall anytime

 

[Kev]

Hi, I've had both. Kept a diary here on both drugs. The AZA, despite regular blood tests to guard against it, put me in Emergency Room, and gave me side effects that last nearly a full year. Plus possibly some other issues I won't go into. The LDN? Well, it just literally saved my life. Everyone is different... the side effects don't affect everyone. But you owe it to yourself to review all the side effects, risks, benefits, before you make your decision.

 

[stevej54]

I just started Azathioprine this week after my remicade and lialda were not working well enough. I'm now back on prednisone, no taper, for two weeks and then a series of blood tests to see if the Azathioprine can be increased to 50 mg. My doc also said it may take a few months for this to help but he thinks its a good teatment option seeing that the others arent working as well as he would like. We'll see what happens.