I just joined the forum this evening, and will be praying for all of you! My son was diagnosed with colitis when he was 7 and he recently turned 16. It has been quite a battle for my guy and truly for our whole family, but especially for Jonathan. I have a question and would love some input from you moms (and dads) out there who I think sometimes have more insight than our brilliant doctors. Here goes...about 4 years ago when Jonathan's symptoms had worsened, his GI doc wanted to move him from Pentasa to 6MP. Wow, after reading about 6MP my husband and I were so frightened that we began to look for other answers. We took him to a natureopathic doctor (he had been to several before this one and none of them really helped him for the long haul), but we decided to try this route one more time and decided that if it did not work, we would concede to the 6MP. I told the ND that IF her supplements helped, we would know that it was not a coincidence...we would know that he was not heading for remission and happened to be taking her "stuff" when his body was going to start remission anyways. We knew that, b/c he was so very sick (bleeding, diarrhea, even vomitting b/c he was in so much pain at times). Miraculously, her supplements (I call them potions b/c it amazes me that products she gave us could take away those horrible symptoms when medication could not even come close. Well, we were thrilled to say the least. He remained fairly symptom free for a few years. By this time, we had stopped seeing our GI doc and were totaly relying on the natural doctor. Well, this past year he got really sick again and we were scared. We felt grateful that the natural path worked as long as it did, but we felt the need for medical intervention. So, we took him to another pediatric GI doctor and she did lots of bloodwork and gave him a pretty thorough evaluation. His sedimentation rate was perfect which was encouraging. But, when she performed a colonoscopy on him the results came back poor - moderate to severe UC. She said she saw 3 small ulcers in his upper GI and suspected that he could possibly have Crohn's but really thought it was UC. She was not able to biopsy those ulcers so later did another test where he swallowed a camera and the camera traced his GI tract on a film which was later reviewed by a couple of GI docs. They both felt his diagnosis was Crohns rather than UC and strongly recommended that we put him on 6MP. So, we are back where we started from about 4 years ago. I am nervous about the medicine, but my husband is convinced that he will have a normal life if he goes on it and we want that so badly for him. He is an active teenager and this holds him back so much. I worry about the side effects that can happen to people on this med. Have any of you or your kids taken 6MP and if yes, what were your experiences. Sorry this is so long!
New Mom with 6mp concerns
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Hi Mom, I thought you'd do better with your own thread.
My son was on 6mp for a little over a year w/o any ill effects. It did fail to give him complete remission and his blood works began to slip so we moved on to Humira. Initially, we were very afraid when we saw the possible side effects but EJ was never bothered by it at all.
I certainly understand your concerns, we all do, and I know you only want what's best for your son. I think if you look around, though you may find dissenters, most do not regret this or that med. They will tell you it's a far worse thing to allow crohns or UC to go unchecked. There are many on here who can attest to that!! Good luck!!
My son was on 6mp for a little over a year w/o any ill effects. It did fail to give him complete remission and his blood works began to slip so we moved on to Humira. Initially, we were very afraid when we saw the possible side effects but EJ was never bothered by it at all.
I certainly understand your concerns, we all do, and I know you only want what's best for your son. I think if you look around, though you may find dissenters, most do not regret this or that med. They will tell you it's a far worse thing to allow crohns or UC to go unchecked. There are many on here who can attest to that!! Good luck!!
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Hi Jmom,
I am so sorry to hear about your son's illness. My son just turned 17 and was diagnosed with Crohns in May. He has never taken 6MP so I can't help you with that...
You will find many informative and supportive people on this site and many parents who share your concerns. As parents, we can all understand how difficult and heartbreaking it is when your child is sick!
My son has been treated with an enteral diet therapy and has, so far, responded well. I feel so lucky that we have been able to go this route but do worry (endlessly!) that eventually we will also be faced with the same tough decisions regarding medications. :yfrown:
The ED therapy has no side effects and studies have shown very positive results with children. I don't know if you have researched/discussed ED therapy or if it is an appropriate treatment for your son, however, here is a link to a post I made last week explaining the treatment (as per what my son's GI told me) - http://www.crohnsforum.com/showthread.php?t=21664.
I hope that your son is able to begin a treatment soon and quickly feels better!! Let us know how he is doing.:ghug:
I am so sorry to hear about your son's illness. My son just turned 17 and was diagnosed with Crohns in May. He has never taken 6MP so I can't help you with that...
You will find many informative and supportive people on this site and many parents who share your concerns. As parents, we can all understand how difficult and heartbreaking it is when your child is sick!
My son has been treated with an enteral diet therapy and has, so far, responded well. I feel so lucky that we have been able to go this route but do worry (endlessly!) that eventually we will also be faced with the same tough decisions regarding medications. :yfrown:
The ED therapy has no side effects and studies have shown very positive results with children. I don't know if you have researched/discussed ED therapy or if it is an appropriate treatment for your son, however, here is a link to a post I made last week explaining the treatment (as per what my son's GI told me) - http://www.crohnsforum.com/showthread.php?t=21664.
I hope that your son is able to begin a treatment soon and quickly feels better!! Let us know how he is doing.:ghug:
AZMOM
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My daughter took 6MP without any issues for almost 2 years. She really didn't experience any side effects at all. Bloodwork is monitored very closely. It really worked well to keep her in remission. She did, after some time, have a rise in liver enzymes. When we lowered the dose due to this, she began to flare.
It is a tough choice and while the natural route can be very helpful, you have to balance the risks of not treating the disease really. I hope that doesn't sound harsh!!! I know it is hard.
My husband and I try to balance the risk/benefit/quality of life for every drug choice.....these little GI tracts have a long time to last! And of course, we pray for a cure.
Let us know how he's doing. And whatever route you choose, know that you have support here!!!
Julie
It is a tough choice and while the natural route can be very helpful, you have to balance the risks of not treating the disease really. I hope that doesn't sound harsh!!! I know it is hard.
My husband and I try to balance the risk/benefit/quality of life for every drug choice.....these little GI tracts have a long time to last! And of course, we pray for a cure.
Let us know how he's doing. And whatever route you choose, know that you have support here!!!
Julie
DustyKat
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Hi jmom and :welcome:
I'm so sorry to hear that Jonathan is having problems.
Re: New thread - When you go to the main page and click on any title, like Parents of Kids w/IBD, it will display all the threads in that forum. Look to the top left hand side of the page and you will see a light blue button, between the two darker blue tool bars, that says New Thread. Just click on that and type away!
Both of my children are on Azathioprine (Imuran) which is almost the same medication as 6mp. I felt the same way as you do about commencing it and I have no doubt we all feel the same way when our children need to move to these type of medications. Unfortunately we are at times left with very little room to move and we find ourselves needing to choose between what for all intents and purposes are two evils. I had the choice with my daughter of commencing a maintenance medication or risk seeing her go through a journey again that she had just completed. It wasn't a pleasant journey, in fact it was a nightmare, so for me at the time, although a very difficult decision, it paled in comparison to the alternative. My daughter has been on Imuran for 5 years now with no complications or side effects.
My son was diagnosed with Crohns last December and he ended up with the same outcome as his sister. So again I found myself having to face the decision again. I was easier for me this time round simply because I had Sarah's positive outcome to look to. My son has now been on Imuran for 9 months without complications and side effects also.
If you choose to go down that path they should do, or may already have done, what is called a TPMT blood test that tests the level of enzyme present in the liver that breaks down the drug. The higher the levels present the less chance of developing side effects. As Julie has said, his bloods will be closely monitored to ensure any problems that may arise will be dealt with expeditiously.
Good luck hun and welcome aboard!
Dusty. :heart:
I'm so sorry to hear that Jonathan is having problems.
Re: New thread - When you go to the main page and click on any title, like Parents of Kids w/IBD, it will display all the threads in that forum. Look to the top left hand side of the page and you will see a light blue button, between the two darker blue tool bars, that says New Thread. Just click on that and type away!
Both of my children are on Azathioprine (Imuran) which is almost the same medication as 6mp. I felt the same way as you do about commencing it and I have no doubt we all feel the same way when our children need to move to these type of medications. Unfortunately we are at times left with very little room to move and we find ourselves needing to choose between what for all intents and purposes are two evils. I had the choice with my daughter of commencing a maintenance medication or risk seeing her go through a journey again that she had just completed. It wasn't a pleasant journey, in fact it was a nightmare, so for me at the time, although a very difficult decision, it paled in comparison to the alternative. My daughter has been on Imuran for 5 years now with no complications or side effects.
My son was diagnosed with Crohns last December and he ended up with the same outcome as his sister. So again I found myself having to face the decision again. I was easier for me this time round simply because I had Sarah's positive outcome to look to. My son has now been on Imuran for 9 months without complications and side effects also.
If you choose to go down that path they should do, or may already have done, what is called a TPMT blood test that tests the level of enzyme present in the liver that breaks down the drug. The higher the levels present the less chance of developing side effects. As Julie has said, his bloods will be closely monitored to ensure any problems that may arise will be dealt with expeditiously.
Good luck hun and welcome aboard!
Dusty. :heart:
sorry to hear what you and your family are going through. my daughter is 13yrs old and was diagnosed with CD in December 2010. She has been on 6mp for the past 9 months and hasnt had a flare up since.. I understand how you feel, I was also very scared of what might happen while taking this medication after reading about side effects but she hasnt had any bad side effects yet. like azmom, I also use risk\benefit factor and at that time my daughter was suffering so much that the benefits out-weighed the risk. I think that we were going through so much that I was constantly thinking of all the bad stuff that could happen but it didnt turn out to be as bad as I thought. well, whatever you decide I hope your son starts to feel better and get the treatment he needs. Good luck.
Thanks!
:hug:Thanks for the words of encouragement and wisdom from all of you! Yes, my husband (who is very logical) says we need to weigh the benefit vs risk and the GI has explained to us that Jonathan could lead a normal life if the 6MP works for him AND it will help prevent colon cancer in future years (I cringe to even say or write that word when talking about my baby...16 years old but still my baby). I heard it one time said that 90% of the things we worry about never happen, so maybe the bad side effects will fall into the 90% for us and he will be just fine. That is our prayer. We are scheduled to go on a cruise for my dad's 75th birthday in November (over Thanksgiving), so our thought is if we are going to pursue this med, we should start now. I read (is it true) that most reactions (especially pancreatitis which is really scary) generally occur within the first month or so after starting. If we do give him this med, we are going to be very optimistic that this will help him, but IF he has a problem, I don't want it to be while we are in the middle of the ocean. I will keep you guys posted as to what we decide to do. Also, I think it takes a few months to see results. Is that true too?? Maybe he will be feeling great on the cruise which would be amazing. Thanks again to all of you for your advice and encouragement.
:hug:Thanks for the words of encouragement and wisdom from all of you! Yes, my husband (who is very logical) says we need to weigh the benefit vs risk and the GI has explained to us that Jonathan could lead a normal life if the 6MP works for him AND it will help prevent colon cancer in future years (I cringe to even say or write that word when talking about my baby...16 years old but still my baby). I heard it one time said that 90% of the things we worry about never happen, so maybe the bad side effects will fall into the 90% for us and he will be just fine. That is our prayer. We are scheduled to go on a cruise for my dad's 75th birthday in November (over Thanksgiving), so our thought is if we are going to pursue this med, we should start now. I read (is it true) that most reactions (especially pancreatitis which is really scary) generally occur within the first month or so after starting. If we do give him this med, we are going to be very optimistic that this will help him, but IF he has a problem, I don't want it to be while we are in the middle of the ocean. I will keep you guys posted as to what we decide to do. Also, I think it takes a few months to see results. Is that true too?? Maybe he will be feeling great on the cruise which would be amazing. Thanks again to all of you for your advice and encouragement.
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Regardless of age, I think they are ALWAYS our babies! :heart: Wishing all goes very well for him with his treatments and that he's feeling absolutely PERFECT for the cruise!! It'll be an even bigger celebration! :dance::dance::dance:
You are right!
Oh, you have got that right and yes, we will surely rejoice on the cruise if he is feeling perfectly and can truly enjoy the vacation. It is interesting, because he first got sick (age 7) after we returned from a cruise which visited Mexico. We were at a pool near a beach and a hotel (we thought the pool was part of the hotel and that it was safe). As it turned out, it was not monitored by the hotel and the water was not filtered properly. He swallowed a ton accidently like lots of little kids do, and we were worried he would get sick. I have 4 children and he was the only one who swallowed the water and the only one who got sick. He got VERY sick within a few weeks following our trip. It took a month to get him diagnosed properly, and when we did, I asked the doctor if our trip to Mexico could have had anything to do with this. She said no and subsequent docs have agreed, but in the back of my mind, I always wonder. They did stool checks and could not find parasites, but I am also told that is hit or miss. Well, guess what...we are NOT going to Mexico this time. We are going to the Eastern Caribbean where Mexico is not in sight
Thanks again for the encouragement!
Oh, you have got that right and yes, we will surely rejoice on the cruise if he is feeling perfectly and can truly enjoy the vacation. It is interesting, because he first got sick (age 7) after we returned from a cruise which visited Mexico. We were at a pool near a beach and a hotel (we thought the pool was part of the hotel and that it was safe). As it turned out, it was not monitored by the hotel and the water was not filtered properly. He swallowed a ton accidently like lots of little kids do, and we were worried he would get sick. I have 4 children and he was the only one who swallowed the water and the only one who got sick. He got VERY sick within a few weeks following our trip. It took a month to get him diagnosed properly, and when we did, I asked the doctor if our trip to Mexico could have had anything to do with this. She said no and subsequent docs have agreed, but in the back of my mind, I always wonder. They did stool checks and could not find parasites, but I am also told that is hit or miss. Well, guess what...we are NOT going to Mexico this time. We are going to the Eastern Caribbean where Mexico is not in sight
Thanks again for the encouragement!
I also want to respond to DustyCat...he did have a blood test to determine if he is a good candidate for the drug. I did not know the test gives some indications as to whether they will have side effects. Well, the doctor said he is a good candidate so that is really encouraging if it also means less likely to have those awful side effects. What a blessing that your kids are doing well...I know about the road you are referring to. We have been down it and back too many times. Stress seems to make things so much worse. Any suggestions in that area...I don't mean normal stress like worrying about getting a good grade on a test or typical things kids are concerned about. I mean stress regarding the "bathroom situation." At school he says the mornings are the toughest b/c he is worried about having to go to the bathroom and then as a result, he is in there for a good bit of his first and second classes. By afternoon I think he is more relaxed and enjoys his day. When he goes places with friends his first thought is - where is the bathroom and can I get to it quickly if I need to. He has never had an "accident" thankfully, but it must be so uncomfortable to feel that way. Ughhh, it breaks my heart
DustyKat
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It will take 6mp at least 3 months to become fully therapeutic. The usual course of treatment is to give a corticosteroid like Prednisone or Budesonide in conjunction with the 6mp over approximately an 8 week period. The idea being that the steroid will hit the inflammation on the head hard and fast and induce remission then the 6mp will be therapeutic enough by then and take over to maintain remission.
As Tesscorm has said, studies do indicate that an elemental diet, particularly in children, has the same success rate as Prednisone at inducing remission. It is normally prescribed over the same time frame, about 6-8 weeks.
The issues with the bathroom should settle once this flare is brought under control. Response (reduction of symptoms) with either method is normally quite quick.
Dusty. xxx
As Tesscorm has said, studies do indicate that an elemental diet, particularly in children, has the same success rate as Prednisone at inducing remission. It is normally prescribed over the same time frame, about 6-8 weeks.
The issues with the bathroom should settle once this flare is brought under control. Response (reduction of symptoms) with either method is normally quite quick.
Dusty. xxx
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Hello Jmom!!!
My son Tanner has been on 6mp for quiet awhile now and we have only had one problem a bout of pancreatitis, which at the time he had a kidney stone also so he was just in pain. But other than that 6mp seems to be the only thing that has really worked for Tanner and we have tried them all. Now I have not done the 6mp with any other med like remicade, I will not do that either unless I am up against it and feel I have no choice. Tanner has had a couple of major surgeries, had an ileostomy and then had to have all but 10 to 12 inches of his colon removed but with that done and the 6mp so far so good.
Good luck!
My son Tanner has been on 6mp for quiet awhile now and we have only had one problem a bout of pancreatitis, which at the time he had a kidney stone also so he was just in pain. But other than that 6mp seems to be the only thing that has really worked for Tanner and we have tried them all. Now I have not done the 6mp with any other med like remicade, I will not do that either unless I am up against it and feel I have no choice. Tanner has had a couple of major surgeries, had an ileostomy and then had to have all but 10 to 12 inches of his colon removed but with that done and the 6mp so far so good.
Good luck!
That's encouraging news! We have a meeting with the GI next Friday to discuss the pros/cons, but I am leaning toward trying this med. I am a little nervous, bc the complications scare me. I was really worried that he could get cancer, but I think with all the monitoring of the WBC he will be okay in that area. Pancreatitis scares me too, but the complications of not getting him in a steady remission are frightening as well. How old is Tanner? Does anybody have any suggestions as to how I can get him to relax when he goes to school. He is so used to feeling badly at school that I think he almosts expects to feel horrible and ends up feeling that way. When he is home or doing fun things, he is pretty much okay. I may have asked that question already...sorry for the repeats if I did but this is a problem for us now.
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How awful that your son is ill at such a young age, I can relate - I was diagnosed aged 7 like him and I'm now 19, I've seen how much my mum worries so I really feel for you <3
I was put on azathioprine ( a very similar immunosuppresent to 6 MP) aged 13 and it was wonderful for 6 years, I completely forgot I had Crohn's, but now it's not working so well and I'm currently trying to get out of a flare on steroids.
I suppose my point is, is that despite the side effects the medicines are really great and could give your son the chance of remission which would be amazing for him. Although I understand your concerns. And yes you do get monitored alot when on these types of medicines so if they see anything dodgy the docs will sort it out quickly
xxxxxxxxxxx
I was put on azathioprine ( a very similar immunosuppresent to 6 MP) aged 13 and it was wonderful for 6 years, I completely forgot I had Crohn's, but now it's not working so well and I'm currently trying to get out of a flare on steroids.
I suppose my point is, is that despite the side effects the medicines are really great and could give your son the chance of remission which would be amazing for him. Although I understand your concerns. And yes you do get monitored alot when on these types of medicines so if they see anything dodgy the docs will sort it out quickly
xxxxxxxxxxx
thanks girls for your insight and encouragement
Wow, thanks girls for your insight and encouragement! That is just what we need!!! I wonder if one doctor is any better than the next in figuring out the dosage, trying to dodge the side effects, etc.??? I like our GI, but my dad did some research to find the top pediatric GI in the country (we live in the US) and one of the docs is located in our city. So, we are going to see him next Friday. I am not sure what makes him one of the "best" but his qualifications are pretty impressive. Our current doc is a female (which I like) but I also thought Jonathan may prefer a male now that he is a big boy (16 years old). Anyways, it will be good to get a second opinion and I can't believe I am saying this, but I think it will be good to get started on that med and pray for a full remission for my guy!!! He loves martial arts - is a second degree black belt in karate and working up the ranks in ju dut zu (can't spell it). I just want him to enjoy life...like you do when you hip hop with Mega Jim It would be awesome if he could forget he has this yucky disease just like you Vicky. I will keep y'all posted!!! Blessings to each and every one of you
Wow, thanks girls for your insight and encouragement! That is just what we need!!! I wonder if one doctor is any better than the next in figuring out the dosage, trying to dodge the side effects, etc.??? I like our GI, but my dad did some research to find the top pediatric GI in the country (we live in the US) and one of the docs is located in our city. So, we are going to see him next Friday. I am not sure what makes him one of the "best" but his qualifications are pretty impressive. Our current doc is a female (which I like) but I also thought Jonathan may prefer a male now that he is a big boy (16 years old). Anyways, it will be good to get a second opinion and I can't believe I am saying this, but I think it will be good to get started on that med and pray for a full remission for my guy!!! He loves martial arts - is a second degree black belt in karate and working up the ranks in ju dut zu (can't spell it). I just want him to enjoy life...like you do when you hip hop with Mega Jim
It would be awesome if he could forget he has this yucky disease just like you Vicky. I will keep y'all posted!!! Blessings to each and every one of youjmom, thanks for sharing your son's story as well as your own, especially with the struggle you go through with the executive decisions in regards to treatment and medicine! I am a Crohn's patient who was diagnosed in Oct. 2003, and I've been on 6mp and Imuran previously. I never suffered side effects from either one; I guess I was just lucky.
When it comes to your kids...if you feel like a second opinion is warranted, what have you got to lose? In my day to day life, it's better to be safe then sorry, I've found. I pray that with this second opinion your son will be placed on the appropriate treatment plan to put him in remission, and may he stay this way for a long time to come. It's hard on him, I know, but as a mother....you have it just as hard because you're child is suffering from something you can't prevent or take away.
As for the holistic approach, I've researched and debated on it several times. Some times it works great for some, and their disease is in remission for quite some time, and for others....not so much. It's one of those approaches that can be hit or miss.
Also, for UC patients, their disease is primarily limited to the colon- and some times the last section of the small intestine, while Crohn's affects anywhere from your mouth to the anus. There's even a difference in the appearance of the inflammation, from what I've been told and from the research I've done. I don't know if you're aware of the CCFA's website (Crohn's and Colitis Foundation of America), but they have a good deal of information in regards to both diseases. Has there been any imaging tests done- like a scope- to determine if he has only colitis or if he suffers from that and crohn's?
I hope that your son gets well and soon. I also wish you and the rest of your family good health and happiness. Have a great day and a wonderful weekend!
When it comes to your kids...if you feel like a second opinion is warranted, what have you got to lose? In my day to day life, it's better to be safe then sorry, I've found. I pray that with this second opinion your son will be placed on the appropriate treatment plan to put him in remission, and may he stay this way for a long time to come. It's hard on him, I know, but as a mother....you have it just as hard because you're child is suffering from something you can't prevent or take away.
As for the holistic approach, I've researched and debated on it several times. Some times it works great for some, and their disease is in remission for quite some time, and for others....not so much. It's one of those approaches that can be hit or miss.
Also, for UC patients, their disease is primarily limited to the colon- and some times the last section of the small intestine, while Crohn's affects anywhere from your mouth to the anus. There's even a difference in the appearance of the inflammation, from what I've been told and from the research I've done. I don't know if you're aware of the CCFA's website (Crohn's and Colitis Foundation of America), but they have a good deal of information in regards to both diseases. Has there been any imaging tests done- like a scope- to determine if he has only colitis or if he suffers from that and crohn's?
I hope that your son gets well and soon. I also wish you and the rest of your family good health and happiness. Have a great day and a wonderful weekend!
I'm reading over this and a St. Jude's commercial just ran. Really helps keep things in perspective!
Have you asked your pediatrician about this new GI? We have a user, Connie, from Atlanta. Her 13 yr old daughter has Crohns. PM her. Maybe she knows the doctor.
Good luck!
Have you asked your pediatrician about this new GI? We have a user, Connie, from Atlanta. Her 13 yr old daughter has Crohns. PM her. Maybe she knows the doctor.
Good luck!
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6 MP--Humira
I am in the same position you are in. Only my son is 20 and was on 6mp for about 3 years and did great. He was very tired of going for the blood work and taking all the medications, this is before all the warnings of lymphoma.
So my son went off all medications and feels great. He went for a colonoscopy yesterday and was told the crohns is now severe and needs to start Humira, believe it or not he has very little symptoms. I am like you , scared to death. I have decided to take him to the Cleveland Clinic for a second opinion. This is a new doctor and I felt he did not take the side effects serious . Please keep me posted
:confused2:
I am in the same position you are in. Only my son is 20 and was on 6mp for about 3 years and did great. He was very tired of going for the blood work and taking all the medications, this is before all the warnings of lymphoma.
So my son went off all medications and feels great. He went for a colonoscopy yesterday and was told the crohns is now severe and needs to start Humira, believe it or not he has very little symptoms. I am like you , scared to death. I have decided to take him to the Cleveland Clinic for a second opinion. This is a new doctor and I felt he did not take the side effects serious . Please keep me posted
:confused2:
