Getting on Imuran, need advice

[BlackLotus]

I have been originally diagnosed with CD in 2000. I was taking Prednisone for a month or so and then Pentasa for about 6 months before I stopped and decided to go to a naturopath that was recommended by my family. The naturopath put me on Moducare and other herbal supplements. I stopped taking Pentasa and took the Moducare and other things she recommended for about 1 year. Afterwards, I stopped taking all of them completely. I had believed that the CD was a false diagnosis and moved on with my life. Until 2013, I had no issues whatsoever.
In 2013, I had a stomach virus and stress which seemed to have triggered my CD again. I was hospitalized and informed that I do in fact have symptoms that are CD symptoms.
I had my first colonoscopy done and it confirmed inflammation in the terminal ileum. They assigned a GI doc to me which recommended I start on Prednisone and Imuran. I wanted relief so I agreed. My family again told me that I should talk to the same naturopath. After taking Imuran for about 4 months, I had a CT scan which showed that inflammation has decreased but was still there. I was not having many symptoms after the Prednisone though, so I was not sure whether Imuran was helping and to what extent. I had a lot of fear about taking it for a long time because of increased risks and also because I was not sure if I could drink alcohol, etc.
While on Imuran, I got tested for H.Pylori and they found I had it so I took some stuff to get rid of the H.Pylori.
I decided to talk to the naturopath and since I've had good experience with that in the past, I decided to stop taking Imuran (4 months into it) and get back on a natural/herbal treatment w/ Moducare and Vitamin D3 as well as L-Glutamine and other things. This was to be done for 6 months and then re-evaluate.
During the 6 months, I was having no issues and very minor discomfort at all. I was also on a no dairy, no wheat diet the entire time since I quit taking Imuran.
After 6 months passed, I started taking only Moducare and Vitamin D3 5000 IU daily (which were both things I took during the 6 months naturopath treatment).
However, my naturopath passed away and I was not able to find out what to do once I am done with the 6 months treatment.
So, I found another naturopath which recommended that I do a fecal matter exam and figure out what bacteria in my gut is not balanced.
After the exam results came in, she recommended some probiotics and herbal biotics for me to take for 30 days and others for 60 days. After I started taking them, I felt some pains in my gut. After 25 days, I stopped taking them because I had more pains.
I was scared and I did not want to live w/ the pain and fear of pain returning.
I went back to my GI and asked if I should get back on Imuran.
He said yes and now I am faced w/ the anxiety of getting back on Imuran (125mg). I am mainly scared/anxious because it feels like such a "life changing decision". I stopped feeling any major pain or discomfort after I stopped taking the herbal biotics so I am kind of in a bind now, should I take the Imuran or go on with Moducare.
To give you more context, I do not have typical crohns problems like diarrhea, so I guess it's a pretty mild CD.

TL;DR -- Scared to take Imuran (indefinitely) and want to know what you think.

 

[7vNH]

The "stuff" you took to get rid of H. Pylori probably did a lot of damage to your micribiome...what was it, exactly? Did you have stomach ulcers? H. Pylori lives happily in many people without inducing symptoms. In fact, there is a case to be made that it should be left alone as long as your stomach acid is strong enough because it can work in a positive way with your immune system. But the standard of care is to eradicate it, even if that damages your gut microbiome. This will probably change, but will take years for the dogma to lessen.

I don't have any advice about your question concerning Imuran since I have no experience with it.

 

[hawkeye]

I was on it for the better part of 23 years without any issues. I have been off all meds since my surgery in February.

 

[DJW]

Hi and welcome

I've been on imuran for a year. I start Remicade in a month. Inflammation needs to be treated. It can be there without symptoms causing damage.

BTW: not having issues with Imuran.

 

[Orchid]

Azathioprine/6-MP is a very safe drug with the proper blood testing for liver and kidney function and many people take it for their entire lives with minimal side effects. You barely gave the Azathioprine/6-MP anytime to help you - it can take anywhere from three to six months to build up to clinically useful levels in your body. The side effect list represents possibilities, not guarantees, you still have a better chance of winning the lottery or getting struck my lighting than getting cancer while on Azathioprine/6-MP, especially if you're afab.

 

[BlackLotus]

7vNH:
I believe I took Lansoprazole (Prevacid) for it. I was having symptoms like nausea in my throat but not actually having to throw up, just a funky feeling. I told my doctor and he got me tested for H.Pylori and when it came back positive, he prescribed Prevacid, which was disgusting to take but after 14 days I think the H.Pylori was gone. I had to take another breath test to make sure it was gone afterwards. It's possible that it damaged my microbiome, you're right. I have tried restoring it after getting a fecal matter test by a naturopath and trying to balance my gut bacteria, but I stopped that treatment after 25 days (recommended for 30 days) because I was getting some pains.

Hawkeye:
Why did you stop taking it after surgery?

DJW:
Thanks and good luck on remicade. Why are you starting it, is Imuran not enough for you?

Orchid:
I did do a ton of blood tests initially when I took Imuran 1 year ago. My dr prescribed the final dose (125mg) to me today and first blood test in 1 month because he said I was not having issues w/ it the first time around.
What is "afab"?

 

[DJW]

Typically they are used together for aggressive treatment. Imuran alone wasn't enough - uunfortunately.

 

[Orchid]

Assigned (physically) female at birth. People born physically female are less prone to immune system related cancers for unknown reasons.

 

[BlackLotus]

Assigned (physically) female at birth. People born physically female are less prone to immune system related cancers for unknown reasons.

I am a male :tongue:

 

[BlackLotus]

Typically they are used together for aggressive treatment. Imuran alone wasn't enough - uunfortunately.

How did you know it was not enough, were you having symptoms?

 

[hawkeye]

Hawkeye:
Why did you stop taking it after surgery?

Surgeon told me to stop taking it until I had a follow up with my Gastroenterologist who told me to stay off of it until my scope in November.

Following surgery I have no symptoms so we are waiting until November to see what the scope finds.

 

[Orchid]

I am a male :tongue:

Than you have an admittedly higher risk of cancer from azathioprine/6-MP if you're amab but still very low. The most common cancers from it are skin cancers anyway, which usually just involve a dermatologist taking a belt sander to the thing.

 

[DJW]

How did you know it was not enough, were you having symptoms?

Scope in Feburay. My surgery in may delt with my chronic weekly obstructions.

 

[Solster]

Hi,

Just wanted to say that I was tested for H. Pylori as well a couple of years ago and treated with antibiotics (also Lanzoprazole I think). It triggered my first major flare-up and I've always thought it could be linked to the Crohns. I did already suffer with frequent BMs before that as well (it's the reason I went to the doctor in the first place) but that was mild compared I how it's been pretty much ever since.

 

[Orchid]

CD involves many genes implicated immunodeficiency, so it could be your H. Plyori infection was worse because of your genetic history.

 

[BlackLotus]

Took my first dose, straight away as GI recommended 125mg since I already was on it a year ago. Felt a bit warm and kind of difficult to focus. Mild side effects which I do not remember the first time around when I started taking Imuran a year ago (for 4 months) but it was a gradual increase before and this time it was right away 125mg. Maybe that's the difference. Anyone remember their side effects when first starting?

 

[DJW]

I felt like I had the flu. But it only lasted a few days. I felt fatigued. There were some other effects but nothing that stands out.

It took a few months to completely adjust. I get monthly blood work.

 

[Orchid]

Yeah, flu like symptoms are common when dosing is started. If they persist you need to talk to your doctor.

 

[BlackLotus]

I just got home from work and ate some baked apples/pears that my wife made. About 5 mins after I got nauseous and had to throw up once. Is it common to have this with Imuran? I never had that happen before.

 

[Orchid]

Imuran's most common adjustment period side effect is extreme nausea. It's listed in your patient information page.

 

[BlackLotus]

Question regarding the blood tests, can they tell that you may be at risk of skin cancer w/ them?
I've scared myself now reading about some people that developed skin cancer after taking Imuran for a long time.

 

[Orchid]

No, but thankfully you can see skin cancer. And skin cancer is among the best understood and mostly easily treated kinds of cancer, simply cutting it surgically off is usually enough. The two most common kinds of skin cancer, Basal cell carcinomas and Squamous cell carcinomas, have a 90% and 70% cure rate via Mohs Surgery. Melanoma is much more dangerous, but much more rare also.

 

[7vNH]

7vNH:
I believe I took Lansoprazole (Prevacid) for it. I was having symptoms like nausea in my throat but not actually having to throw up, just a funky feeling. I told my doctor and he got me tested for H.Pylori and when it came back positive, he prescribed Prevacid, which was disgusting to take but after 14 days I think the H.Pylori was gone. I had to take another breath test to make sure it was gone afterwards. It's possible that it damaged my microbiome, you're right. I have tried restoring it after getting a fecal matter test by a naturopath and trying to balance my gut bacteria, but I stopped that treatment after 25 days (recommended for 30 days) because I was getting some pain

Antibiotic treatment regimens use a medication called metronidazole (Flagyl) or clarithromycin (Biaxin). Those are the ones that kill off your gut microbiome. If you didn't get those, or some variation of antibiotics, you probably didn't get a lot of damage to your microbiome. But you also probably still habor H. Pylori, just in lower counts. That is not necessarily bad, though; if it is not causing symptoms, it can be beneficial to your immune system.