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Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Imuran and meds in general


12-13-2011, 05:54 PM   #1
ThePriest
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Imuran and meds in general

Hi everyone,
I am new here.
I am a 30 year old male. I was diagnosed with Chrons about 10 months ago after excruciating abdominal pains led me to the Emergency Room and then immediately to the operating room. I had severe inflammation that led to a perforation in the ileum, and they had to remove about 60 cm (24 inches) of my small intestine. I was hospitalized for a week (which was hell), but I did not receive any treatment until this point, for various reasons.
I am generally very skeptical (and perhaps a bit paranoid) about conventional medicine (drugs, vaccinations, etc..), and my instinct is to avoid them as much as possible. (I acknowledge that this may have been to my detriment, since my condition could have been discovered earlier had I been examined more thoroughly in previous years.)
In any case, my only response to the diagnosis to this point was consulting with friends who are knowledgeable in natural healing, alternative medicine, macrobiotics, etc...and I have tried to incorporate some of their suggestions into my lifestyle - mainly in terms of changing my diet and taking some supplements that are supposed to help my digestive system.
This week I had a colonoscopy (for the first time) and the doctor said that my small intestine is still inflamed. He suggested that I begin treatment with Imuran, beginning with a small dosage (50 mg) and then working my way up to about 200mg. As I said above, I am generally not very fond of the idea of drugs, and reading some of the reviews online from some of the people who used Imuran makes me absolutely terrified of it. It seems like the potential dangers - things like cancer, liver disease, skin diseases, hair loss, etc...may far outweigh the benefits.
Of course, the doctor warned me that it is essential to treat my condition, since it can potentially get much worse and effect other places throughout the digestive system. At the same time, I am concerned about the long-term effects of regularly taking a drug like this - as well as all of the vaccinations that I will need - on my overall health. I understand that this drug has helped some of you alleviate the daily discomfort involved with Chrons, but the discomfort is something I can live with if I have to. I am more concerned with my long-term health. (For example, will I will feel better for the next couple of years, but in another 10 or 20 years I am likely to end up with another serious condition that is a byproduct of the drugs?).
So the fundamental question here is whether treating my condition with Imuran is absolutely necessary, or are there natural alternatives that can be just as effective without the added risks that are created by the "side effects" of the drug, or perhaps is there another "safer" drug that is not as damaging to the immune system or the body in general.

I also fear that Chrons - like many other diseases - has a psychological/emotional/spiritual root cause to it, and that medications fail to address these issues - which have a direct impact on our physical well-being.
And I don't want to create dependency on a drug, and not address the root cause (which may be related to family issues, stress, trauma, etc..).

Previous conditions: Asthma.
Current conditions /symptoms (post-surgery): General weakness / loss of energy and stamina, anemia, numerous BMs every day, lost about 20 pounds (mostly while hospitalized, but I haven't been able to put it back on).

I'd appreciate any advice you guys can offer in this matter. I need to make a decision, but I also need the peace of mind that I am making the right decision. Right now I am torn, and it's only stressing me out.

I have a feeling most of you will think I should listen to the doctor, but if that's the case please tell me WHY. Am I being too paranoid? Should I not be worried about the long-term negative effects of this drug that I have seen posted in other forums?

I apologize for being long-winded, but I just needed to get it all out on paper (or on the screen :-) ).
If you read this far, then I am sure you have something to say.
So go ahead. Hit me.
12-13-2011, 06:18 PM   #2
rygon
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Ive never been one to take drugs (paracetamols etc) but ive given all these drugs a go as I know if i didnt I would be in a lot worse shape. Unfortunately people still dont fully understand why Crohns disease happens, why some people get it, or why people just flare up. What has happened is that a lot of research has taken place and these drugs are the best we've got. I doubt any trials have been taken on "alternative" approaches as detailed as this (not to say they dont work though)

As with everything in life (not just drugs) there can be side effects, its weighing up the risks v benefits (nuts can kill you, but would you say the chances of an allergic reaction stopped you from trying them?).

Personally i'll give them a go as I want to lead a normal life now, and then take the reprocussions later (if any)
12-22-2011, 10:37 PM   #3
toml99
 
Join Date: Apr 2011
Location: Georgia
Your concerns are very valid. I've never liked taking "pills" -- any kind -- and I never subscribed to the "better living through chemistry" viewpoint that pushes people to take medications. Now I find myself taking groups of pills at various times during the day, including the large blue "Smurf" Pentasa pills and the "be sure to wash your hands after handling these hazardous meds" Azathioprine (Imuran) pills (I guess it's okay to swallow them but not touch them?).

My attitude is that I have some physical problems that I can't fix by myself. I've been through some very tough times physically in the past several years, and I've had to pull myself up emotionally more than once. As much as I dislike meds in general, I'm finally getting some help. Sure, there are potential side effects. Take Azathioprine (Imuran) and the increased risk of lymphoma for example -- there is a fourfold risk of lymphoma, increasing from a "normal" level of 1 in 10,000 to 4 in 10,000. So 9,996 people won't develop lymphoma but 4 will? Not bad odds.

Turn the coin over and look at the other side. What's your alternative? Left untreated, Crohn's is going to tear you apart. Literally. Your best play is to drive it as far into remission as you can, and deal with the side effects of your medications as best you can. With the proper medication, your overall state of health is going to be better, even though you may have some side effects. And while at some point in the future you may have to deal with something very bad that was caused by your meds, the overwhelming probability is you won't. You'll just get better.

I like the odds.
__________________
DX March, 2011 - Symptoms 5 years
Azathioprine (Imuran) - 200mg
Vitamin B12 - 1500mg
Slow Fe - 180mg
12-23-2011, 12:48 AM   #4
DustyKat
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I agree with the medication side of things but not because the doctor says so but of what I know, and you do, untreated Crohn's can do to you. My children also have Fistulising Ileal Crohn's and left untreated, for them it is a death sentence. So Although I hate the thought of them putting Imuran into their mouths every single day the alternative is far worse. You have obviously read the side effects and yes, they are bloody scary but you need to look at things objectively and also acknowledge that the side effects of your untreated Crohn's are just as scary, if not more so.

I also urge you to look to the effects that your resection is having on you. With the amount of bowel you have had removed you should be having B12 injections. Also be sure and have your blood tested for B12, Iron Stores, Folate and Vitamin D. Addressing these issues may go some way to alleviating your weakness/fatigue problems. Also perhaps have Questran prescribed or use psyllium husks as a way of dealing with your diarrhoea.

Good luck and let us know what you decide!

Dusty. xxx
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12-23-2011, 03:44 AM   #5
ThePriest
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Thanks guys for your advice. It has been REALLY helpful, hearing it from people who have personal experience with this.
I started getting B-12 injections - which are literally a PAIN IN THE BUTT (Is there no other way to for them to be administered?!)...as well as my vaccinations.
And as of next week I will probably start taking Imuran. I will also try to add some natural remedies to my diet, which may help counter the effects of the drug.
I will keep you posted as I continue on this journey.
12-23-2011, 08:51 AM   #6
toml99
 
Join Date: Apr 2011
Location: Georgia
B12 injections can also be given in the outside of the thigh or the upper arm. Either place will work. Good luck on your journey -- it isn't easy, but you have a very engaged, caring community on this forum that will pitch in to help.
12-24-2011, 07:17 AM   #7
ErikaHouston
 
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Your concerns are completely valid. If you go on the main board and hear all the regrets of those that went un-medicated for years it will likely change your sentiment. Imuran has been on the market since the 60's which is about 30-40 years longer than most Crohn's drugs (except the dreaded prednisone). I felt safe going on it and was recommended to do so by MD Anderson Cancer Ctr docs (#1 in US). I have a history of Melanoma. I have been on it for 12 months now and some days I forget about Crohn's completely. First month on drug I felt horrible but that subsided as my body got used to it.
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3 Hemorhages (July '10, Sept '10, Oct '10) - no other Crohn's symptoms

Diagnosed Oct'10

Currently on Entocort and Apriso and starting Imuran in December '10

History of Melanoma ('08) so avoiding TNF blockers.
12-27-2011, 05:38 PM   #8
Snap
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Hey--it's always a toss up between what can scare you the most---the disease, the drugs, or the general cost of the disease and that associated with it. It feels unpleasant to feel "backed into a corner" at times, but then we just suck it up, shake our fists, appreciate the good things and those we love in life---and keep on truckin. I have taken Azathioprine for many years without any significant problems. Frequent blood tests will monitor your blood count and liver enzymes. (I no longer take it as I just had major abdominal surgery). Anyway, Imuran has been around forever--and it is less risky than most. It is administered to kidney transplant patients in hopes that their bodies will not reject the new organ---so they give it to us so our immune systems will quit trying to reject the bowel. Imuran does have it's advantages: less toxic than a lot of immune modulating drugs, easy to take, and it is cheap. Best of luck to you. OH, while on Azathioprine I took green tea capsules for extra anti-oxidant support. Every little bit helps for sure! Snap
02-14-2012, 10:34 AM   #9
stratford
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Join Date: Jul 2011
Location: 30 min train ride to London 2012

This week I had a [wiki2="Colonoscopy"
said:
colonoscopy[/wiki2] (for the first time) and the doctor said that my small intestine is still inflamed. He suggested that I begin treatment with Imuran, beginning with a small dosage (50 mg) and then working my way up to about 200mg. As I said above, I am generally not very fond of the idea of drugs, and reading some of the reviews online from some of the people who used Imuran makes me absolutely terrified of it. It seems like the potential dangers - things like cancer, liver disease, skin diseases, hair loss, etc...may far outweigh the benefits.
Of course, the doctor warned me that it is essential to treat my condition, since it can potentially get much worse and effect other places throughout the digestive system. At the same time, I am concerned about the long-term effects of regularly taking a drug like this - as well as all of the vaccinations that I will need - on my overall health. I understand that this drug has helped some of you alleviate the daily discomfort involved with Chrons, but the discomfort is something I can live with if I have to. I am more concerned with my long-term health. (For example, will I will feel better for the next couple of years, but in another 10 or 20 years I am likely to end up with another serious condition that is a byproduct of the drugs?).
So the fundamental question here is whether treating my condition with Imuran is absolutely necessary, or are there natural alternatives that can be just as effective without the added risks that are created by the "side effects" of the drug, or perhaps is there another "safer" drug that is not as damaging to the immune system or the body in general.
I tried all the immune system suppresing chemo drugs but they all gave me side affects which were horrible.
14 months ago i started taking AMP (Aloe Mucilaginous Polysaccarides).It has worked better for me than any of the drugs the Dr's ever prescribed.It has been the best treatment i've ever taken for Crohn's.I'm in total remission and i've never had one side affect.
What percentage of Crohn's patients it helps i have no idea but i am so,so glad i tried it.
02-29-2012, 09:16 AM   #10
Equestrian Girl
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Join Date: Jan 2012
Location: near Ottawa, Ontario
I have only been on this Forum for a couple of months now........since I was recently diagnosed with Crohns in Jan/2012. For 18 mths. prior to that........both my G.P., Internal Medicine doctor and 2 other G.I.'s said I had the worse case of Irritable Bowel Syndrome they had ever seen (.......well, now we know that was all WRONG).

Since I am still trying to get this "flare-up" under control........I am still taking Prednisone......and Mezavant...(and some other Anti-Spasmotic drugs).......and I was started on Imuran (50 mg.) on Feb. 9, 2012.

So, after approx. 3 weeks on Imuran........the only thing I notice is that I am getting some nasty headaches (when I never really had any headaches before). The Imuran does not seem to be doing anything else in helping the pain in my intestines.

My intestines are still on fire and I have horrible fatigue and I still have a number of B/M's each day. I have been told that Imuran can take 2 to 3 months to work.....(as I said earlier.......I am only on the 50 mg. dose).......and I see my G.I. again on March 9th.

I'm not sure if I need a stronger dose - or if what I am going through is "normal" ?? Did this happen to anyone else when you started on Imuran ?? Any information you feel like sharing - would be greatly appreciated.

Thanks very much

..........from Equestrian Girl in Ottawa -Ontario, Canada.
02-29-2012, 11:47 AM   #11
michellew
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Join Date: Nov 2011
Location: Halifax, Nova Scotia
HI Equestrian Girl,
I don't have a whole lot of knowledge regarding Imuran (was on it two weeks when I had an allergic reaction). I was however started on 50mg with instruction for take 50mg/day for 4 week, then up to 100mg/day for two weeks and then up to 150mg/day as my permananet dosing.

I hope you get relief soon!

Michelle
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Me:
45 years old
UC diagnosed Dec/07
Crohn's diagnosed Nov/11
Meds:
Methotrexate 25mg/weekly
Prevacid twice a day
Buscopan as needed
starting MLN002 soon
02-29-2012, 12:13 PM   #12
CLynn
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I was on imuran about 15 years ago and just started it again a month or so ago. It worked extremely well for me the first time, a better remission than prednisone had ever given me. So am hoping it will be the same this time, however, I am also 15 years older now, and have had a resection, so I realize the effects of the medicine can be different this time. I had no issues with side effects the first time, and none this time round with exception of being so tired, which can be the med, or a combo of Crohn's and the med, etc...I do know I have to have blood work done regularly to check on liver levels.
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Cheryl
Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
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