Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
I went and saw my doctor today and he decided that the Asacol is for sure not working for me to control all my symptoms. Unfortunately it is only helping me about 60% now. So they have given me three options. All of which I don't like.. or am not sure about. I've given myself a fourth option as well.
1. Remicade. So my first question is for those who are using remicade.. what can you tell me about it? Side effects? Cost (Canada if possible as it is not approved by Health Canada so it's not covered)? Also, I read that there aren't many studies that are geared towards fertility in women and the ability to have children. I would like to have children in the coming years and will not use it if it will affect my chances of being able to have a family. So any ladies using remicade for an extended period of time and still able to have children?
2. Humira. It is not approved by Health Canada so it is being used in clinical trials. I've read all of the side effects and also am aware that you take it by giving yourself injections. Any experience with it? Side effects? Do you do your injections in your abdomen? Pain? The side effects of this one scare me quite a bit. Cancers, neurological side effects.. etc.
3. I can't even ask you about it because the drug is just a few letters and a bunch of numbers. It is another that is in a clinical trial and has not been tested on humans yet. Worldwide there is only 255 people that will be involved in the study. So that's not happening. This one is an oral medication and it is a double blind study where you have an 80% chance of getting one of the doses of medication and a 20% chance of getting the placebo.
4. And my most favorite (because of the scary side effects of all the others and the crazy cost and possible side effects of the remicade) is changing my diet and continuing using the asacol. On a previous post of mine "Truthy" sent me the link to a website about a diet that I would like to try and see if I can control my symptoms with diet and the use of Asacol. I was lucky enough for 11 years to be able to take asacol and eat whatever I want and it just doesn't look that way to me anymore.
Any help you can give me would be awesome! =)
Rachel
1. Remicade. So my first question is for those who are using remicade.. what can you tell me about it? Side effects? Cost (Canada if possible as it is not approved by Health Canada so it's not covered)? Also, I read that there aren't many studies that are geared towards fertility in women and the ability to have children. I would like to have children in the coming years and will not use it if it will affect my chances of being able to have a family. So any ladies using remicade for an extended period of time and still able to have children?
2. Humira. It is not approved by Health Canada so it is being used in clinical trials. I've read all of the side effects and also am aware that you take it by giving yourself injections. Any experience with it? Side effects? Do you do your injections in your abdomen? Pain? The side effects of this one scare me quite a bit. Cancers, neurological side effects.. etc.
3. I can't even ask you about it because the drug is just a few letters and a bunch of numbers. It is another that is in a clinical trial and has not been tested on humans yet. Worldwide there is only 255 people that will be involved in the study. So that's not happening. This one is an oral medication and it is a double blind study where you have an 80% chance of getting one of the doses of medication and a 20% chance of getting the placebo.
4. And my most favorite (because of the scary side effects of all the others and the crazy cost and possible side effects of the remicade) is changing my diet and continuing using the asacol. On a previous post of mine "Truthy" sent me the link to a website about a diet that I would like to try and see if I can control my symptoms with diet and the use of Asacol. I was lucky enough for 11 years to be able to take asacol and eat whatever I want and it just doesn't look that way to me anymore.
Any help you can give me would be awesome! =)
Rachel
I am taking Humira currently (seven months) and self inject this once a week. I'm also injecting methotrexate weekly to help prevent a reaction to the humira and to help with UC associated arthritis. The humira is available in a syringe or injection pen. This Rx has to be refrigerated and is shipped overnight from a pharmacy in an insulated container. Does it hurt? a little. It's not as bad if you wait about 30 minutes at room temp. Is it hard to inject yourself? Not really considering the pain we endure w/ UC; we are strong durable folks, right?
I'm glad you've done some research. These drugs are both biologics and have similar risks; having a problem with one of these doesn't mean you'll have trouble with another. Also dosage and frequency varies. In the US, costs for these drugs with no Rx plan could be about $3000+ per IV for remicade and $1000 per injection for humira. Both Mfg have assistance programs so you might check into that.
I would be happy to answer any additional questions. Send me a note.
There are other medications that you may wish to consider. Have you tried any others? There are several classes of drugs that are effective besides Asacol. There are several other anti-inflammatory drugs like balsalazide, immuno-suppressants like Imuran (Azathioprine), and steroid drugs like prednisone or budesonide, that may be covered in Canada and help with your symptoms. These all have side effects to consider, as well. Diet is a path that many have found relief, as well. A good place to get research info is: http://www.ccfa.org/
I hope you start to feel better soon.
I've read a lot about the risks associated with most of the drugs that are used to help control my UC and am happy with Asacol as it seems to be one of the easiest to tolerate and easiest on the body. Unfortunately I also read that many patients will eventually find that Asacol will stop working after prolonged use. And this is what seems to be the case with me currently.
I did try Imuran this past summer and after two weeks suffered from pancreatitis. Unfortunately, my doctor told me that this takes a few other medication possibilities off of the table for me. I was under the impression that would include any immuno suppressants. Drugs like Remicade and Humira are TNF blockers which is why there is an increased risk of cancers. My family history already puts me at a high risk and I am not comfortable putting myself at a higher risk at this time.
I figured that if I decided to use Humira I would eventually become used to the self injections. However, the list of possible side effects is scary to me. I do know that some of the risks are low but it hasn't really eased my fear quite yet. Not sure why Health Canada hasn't approved the use of it here yet, from what I understand millions are using it in the United States.
My hope is that if I can keep a food diary and cut out trigger foods for me and maintain a healthy lifestyle I can control my symptoms with the continued use of my Asacol and probiotic. I just really hope that things get better before they get worse. I've read lots of horror stories here on Daily Strength and have considered myself very lucky in my illness these past 11 years.
I have already decided that I will not be doing the infusions. Or the humira. I've researched enough now that I am not comfortable with that. what I am doing now is just avoiding trigger foods for me and keeping a healthy balanced diet and trying to gain control of my illness through diet and what my Asacol is helping now.
Too many horror stories for me to be comfortable! And now yours too..
May I ask, what are you using currently to treat your illness? And is it working for you now?
had a really bad flare up about September /October and was put on Remicade. She was diagnosed in 1999 and since being on Remicade it is the best she has ever been.
Yes it does have side effects but one must decide if it is worth the risk.
My daughter lives in Vancouver Canada. I think she said her medical insurance pays $3500 and the government subsidies the rest.
She has imuran and the Remicade. Each person reacts differently Good Luck
Lynne