Hi I've had crohns for more than half of my life. I want off the medicine and that's why I'm here.
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Mercaptopurine and wanting to go natural
- Thread starter michellenwalker
- Start date
Hi there!
What are your reasons for wanting to be off the 6MP? How is your Crohn's currently?
If you're interesting in a holistic alternative, try looking at our Diet, Fitness and Supplements sub-forum: (http://www.crohnsforum.com/forumdisplay.php?f=17) which has plenty of information on IBD related diets, as well as other holistic approaches.
What are your reasons for wanting to be off the 6MP? How is your Crohn's currently?
If you're interesting in a holistic alternative, try looking at our Diet, Fitness and Supplements sub-forum: (http://www.crohnsforum.com/forumdisplay.php?f=17) which has plenty of information on IBD related diets, as well as other holistic approaches.
CrohnsChicago
Super Moderator
Welcome Michelle (nice name by the way...we share something in common 
)
I'm also curious to know your reasons for coming off?
First and foremost you should make sure you discuss all of your concerns with your doctor and ask him what your options are based on your specific condition/the severity of your disease.
What is the status of your disease? Is it still active, how much internal/external damage do you have from crohn's? Are you being regularly monitored and had any recent scopes or reduction in symptoms that make you feel you want to get off or is it that you are concerned about immediate and long-term side effects?
I am also on mercaptopurine (started a little over a month ago). It was necessary for me. Nothing milder was helping and prednisone can't always be my go-to. Something had to give. I had many reservations and put it off probably longer than I should have, but I finally just had to be courageous and try out the medication to see if it would keep me from flaring so frequently.
Yes, there are many other treatments available to you too. Are there any that you have started to consider in place of 6-MP?
)I'm also curious to know your reasons for coming off?
First and foremost you should make sure you discuss all of your concerns with your doctor and ask him what your options are based on your specific condition/the severity of your disease.
What is the status of your disease? Is it still active, how much internal/external damage do you have from crohn's? Are you being regularly monitored and had any recent scopes or reduction in symptoms that make you feel you want to get off or is it that you are concerned about immediate and long-term side effects?
I am also on mercaptopurine (started a little over a month ago). It was necessary for me. Nothing milder was helping and prednisone can't always be my go-to. Something had to give. I had many reservations and put it off probably longer than I should have, but I finally just had to be courageous and try out the medication to see if it would keep me from flaring so frequently.
Yes, there are many other treatments available to you too. Are there any that you have started to consider in place of 6-MP?
Hi guys. Thanks for responding so quickly to my short post. I went in for a refill of my 6-mp and they said it's on a "national back order". Taking a medicine with so many risks scares me already, but I'm afraid the FDA may be investigating the medicine and calling it a back order. I feel that I should question everything especially when it comes to what I put in my body.
I've had crohns since I was 9 and I'm 26 now. A mix of Balsalizide and 6-mp got me over my last flare about 3 years ago and I'm fine now, but my doctor doesn't want to taper me off of anything. This is my first time reaching out online. I usually do my investigating by myself but there are too many options now and I definitely don't want to take anything that can give me cancer, because it's not worth it. I never really considered what could happen to me by taking 6-mp and now that I thought it through there is just no way I'm staying on it.
Let me know if you guys have any tips please
I've had crohns since I was 9 and I'm 26 now. A mix of Balsalizide and 6-mp got me over my last flare about 3 years ago and I'm fine now, but my doctor doesn't want to taper me off of anything. This is my first time reaching out online. I usually do my investigating by myself but there are too many options now and I definitely don't want to take anything that can give me cancer, because it's not worth it. I never really considered what could happen to me by taking 6-mp and now that I thought it through there is just no way I'm staying on it.
Let me know if you guys have any tips please
CrohnsChicago
Super Moderator
Yeah I've been having lots of trouble getting my hands on the medication as well. No Walgreens or local pharmacies have it. In fact they admitted theyve been having some similar issues with Imuran lately as well. It seems like Aza is the only one they have supplies of.
As it is because no one has it, I happened upon a local HIV clinic that has a supply that I get it from for the time being until the "manufacturer" approves shipment. I have researched and the FDA does not have it listed on its medication shortage list. And the Pharmacists association web site says that all manufacturers have it on hold and that the manufacturers gave them no information.
Here's a link to a thread some of us have/ are discussing this matter:
http://www.crohnsforum.com/showthread.php?t=48211
Very frustrating. If this continues my GI is going to put me on Humira I am certain.
As it is because no one has it, I happened upon a local HIV clinic that has a supply that I get it from for the time being until the "manufacturer" approves shipment. I have researched and the FDA does not have it listed on its medication shortage list. And the Pharmacists association web site says that all manufacturers have it on hold and that the manufacturers gave them no information.
Here's a link to a thread some of us have/ are discussing this matter:
http://www.crohnsforum.com/showthread.php?t=48211
Very frustrating. If this continues my GI is going to put me on Humira I am certain.
CrohnsChicago
Super Moderator
The best practice at the moment is to keep people on medication long term to maintain remission. Some of the reasons being that some people find that they go back into flares once taken off the medication. Another reason being that say you do go off the med....if for some reason you flare again, your body may not be as accepting of the mediation you were on previously and have no treatment effect anymore.
So its safer to stay on as maintenance than to get off and risk having to figure things out all over again.
The choice is always yours and there are alternatives such as holistic practices and dietary practices that people choose. Examine your risks vs. Benefits and Just make sure that your decision is informed and caters to your specific condition as no two people experience IBD exactly the same.
So its safer to stay on as maintenance than to get off and risk having to figure things out all over again.
The choice is always yours and there are alternatives such as holistic practices and dietary practices that people choose. Examine your risks vs. Benefits and Just make sure that your decision is informed and caters to your specific condition as no two people experience IBD exactly the same.
Many people are frightened of drugs causing cancer, but there is a higher risk of cancer from immunosuppressants in those who have to take them to avoid organ transplant rejection as they have to take much higher doses. The fact is that if they didn't have the transplant then they would be dead - the immunosuppressants are just a necessity of that treatment and if they don't take them they could reject the organ and die too.
For many people with IBD the end outcome could be the same, but we can take lower doses of the drug and so the risk is lower. Having watched two people go through the absolute worst that this disease can torture them with, I know that I would rather keep taking the tablets rather than risk their fate.
I understand how you feel, and it is only by following this forum and trying to think rationally about these issues when writing posts that I keep my own mind in check about these things. I would love to come off Azathioprine sometime as the thought of taking it for the rest of my life is not a good one, but I'm not sure if I dare risk the potential consequences of that. I'm sure you will find others on here who have stopped medication without any problems, but many also relapse too and end up back at square one.
Please also remember that chronic inflammation, even if it is sub-clinical and doesn't cause obvious symptoms, can be a causal factor in bowel cancer.
We're damned if we do and damned if we don't with this disease!
For many people with IBD the end outcome could be the same, but we can take lower doses of the drug and so the risk is lower. Having watched two people go through the absolute worst that this disease can torture them with, I know that I would rather keep taking the tablets rather than risk their fate.
I understand how you feel, and it is only by following this forum and trying to think rationally about these issues when writing posts that I keep my own mind in check about these things. I would love to come off Azathioprine sometime as the thought of taking it for the rest of my life is not a good one, but I'm not sure if I dare risk the potential consequences of that. I'm sure you will find others on here who have stopped medication without any problems, but many also relapse too and end up back at square one.
Please also remember that chronic inflammation, even if it is sub-clinical and doesn't cause obvious symptoms, can be a causal factor in bowel cancer.
We're damned if we do and damned if we don't with this disease!