• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Need some 6mp / remicade quick advice!

My 11 year old son is in the hospital right now, being treated for an abcess in / near his butt related to his crohns. The abcess wasn't responding to oral antibiotics, so he was admitted to the hospital and put on an IV to receive heavier duty antibiotics. He will also have an MRI to help decide about having surgery to help drain the abcess. We should know the results of the MRI hopefully tomorrow.

My question pertains to a new course of treatment his GI wants to start. For the past five months, my son has been on pentasa, and also using an NG feeding tube at night. Unfortunately, this has not gotten him to remission and he actually lost a few pounds recently.

So, my son's GI wants him to start treatment with both 6mp and remicade. He wants him to start this on tuesday, before he leaves the hospital. I'm feeling a bit rushed on this 6mp / remicade decision, and am interested in what people know and think about it.

I haven't had time to reserach either 6mp or remicade much, though I've reaqd that remicade has some correlation with an increased risk of lymphoma.

One thing someone I know mentioned - the accuracy of this isn't verified - she was raising the question of whether you can go back on remicade once you've been on it and stopped; she was wondering if there might be some type of antibody reaction that could preclude someone from starting remicade, stopping it, and then going back on it again. (The person who mentioned this to me is an m.d. who works for a pharmaceutical and is involved in crohn's reserach, but she said she wasn't an expert in this specific treatment.)

I'd like to not have to make this 6mp / remicade decision so quickly.

A couple of questison that have been suggested I ask my son's GI: does he need to take boht 6mp and remicade at the same time, or can he just be put on one of them.

Also, why couldn't we try using budesonide for a short term to get him to remission and then use the ng feeding tube to try to maintain remission.

I'd appreciate any advice or questions I should ask my son's GI.
 
Sounds odd to me that they'd want to use both, sounds like a shotgun approach to me. Your friend is correct about Remicade, its generally not something you can start/stop/start again.

I haven't taken 6MP but Imuran which is turned into 6MP in the body. I tolerated it well but many others haven't.

Budesonide might be an option but I think I've read that the literature is now saying its not as effective as they once thought it was.

Hope that helps a little.
 
drew_wymore said:
Sounds odd to me that they'd want to use both, sounds like a shotgun approach to me. Your friend is correct about Remicade, its generally not something you can start/stop/start again.

I haven't taken 6MP but Imuran which is turned into 6MP in the body. I tolerated it well but many others haven't.

Budesonide might be an option but I think I've read that the literature is now saying its not as effective as they once thought it was.

Hope that helps a little.
Our GI is advising that our son go on both the 6mp and the remicade for about six months and then, after six months, he discontinue one of them (probably the remicade) and continue on the other (probably the 6mp).

Thanks for your comment.
 
Interesting that he'd want to continue the 6MP and not stick with Remicade given that its a one shot deal. Maybe he's thinking of using Humira as something down the road and thats why Remicade is being dismissed as a future treatment option. I would have thought a more "standard" treatment of Prednisone and 6MP or Remi might be the way to go. I'm not a doctor by any means though. I would certainly ask him why he would choose to go this route just to get his reasoning.

My thoughts are with your son and I really hope he can recover quickly and enjoy a long remission.
 

Kev

Senior Member
I think what your doctor is trying is a new technique developed by Canadian N European doctors. Nancy Lee posted an article on this in this thread

http://www.crohnsforum.com/showthread.php?t=2790

A brief synopsis is that, at six months, this put patients into remission 60% of the cases, Vs about 36% using the traditional step up approach. The step up approach is very conservative... you start off at the lower 'risk' meds N gradually promote to drugs involving more risk (tho known) and hope for the best. however, the double whammy (my term) approach seems to take it for granted that patients will inevitably face/use these higher risk drugs eventually... but doing so the traditional fashions means their chances of success are considerably lower. So, your doctor isn't going off on a tangent; nor is he experimenting with your sons case, he simply is applying the latest medical technology to try to attain remission.

now, I've never been on Remicade (cost is just to great to even consider) but my GI and I have discussed it, and various forum member have been on it. There is a risk that a person who goes on Remicade, then comes off it, may not be able to go on it again due to anti-body development. It is not a certainty... there's a forum member who went on it, came off it, and went on it again. And there's another whose doctor is confident, by juggling the dosage... that they will be able to go off it, and go back on it again (tho it hasn't been put to the test as yet - I think?). I think as a matter of course MOST GI's are leery of attempting it.. the thinking being that once a patient is on it, better to keep than on it than run the risk of anti-bodies making going back on it a risky proposition. You need to fully discuss this with your doctor. A short term course of Remicade may just preclude your son from returning to it at a later date.. just when he might need it the most. If your doctor is planning to eliminate one of the two proposed meds, then it might be better to drop the 6-MP than the Remicade...

Why do I say that? Well, I haven't been on 6-MP (others on here have) but I was on Azathioprine/Imuran.. a form of the same family of drug but it has to be broken down by the body to produce 6-MP. I was only on it for 19 days when I developed severe reactions to it. Ended up in the ER with extreme pains, crippling in fact, and a rash that covered most of my body.
That ruled out the AZA route for me... but it also means I am spared the litany of potential side effects, long term reactions, and weekly bloodtests that go with it. Now, I may be biased (no maybe about it) but I would be reluctant to go with AZA or 6-MP over Remicade if the choice presented itself. Having said that, there are any number of members on here who've had long term use of 6-MP. Let them tell you their own stories, pro or con.

Anyway, hope this is helpful. Good luck with your son. Keep in touch, OK?
 

butt-eze

Superstar
There isn't an easy answer. I have tried AZA (which metabolizes into 6-MP) and I've tried Remicade.
It's true that your body will most likely develop a resistance to the affectiveness of Remicade if you start and then discontinue. At a recent conference the presenting doctor said once you start you shouldn't stop unless you plan on never using it again. Remicade works for a lot of people but loses it's affectiveness sometimes.
As for 6-MP this drug affects your liver (sometimes!). If it works it can help a great bit but if it doesn't it can cause nausea, vomiting, diarrhea, etc.

I would ask your doctor why they haven't used prednisone to stop the inflammation and induce remission.

I would also caution against starting two drugs at once. If your son is induced into remission you wouldn't know which medication worked. And that goes for the opposite argument. If he has a severe reaction you won't know which medication to discontinue. This was described to me by one of my amazing doctors.

At one point in time I was on chemotherapy (pill form) and low dose steroids. My doctor let me choose which to discontinue first. However, he warned against stopping both because if I had a relapse then we wouldn't know which medication to start up again. I hope this is making sense.

Have you tried prednisone? Many people hate it for it's long term side affects but it is usually the best option in reducing remission. Remicade and 6-MP can take time to kick in.

Hope this helps.
 
Kev said:
I think what your doctor is trying is a new technique developed by Canadian N European doctors. Nancy Lee posted an article on this in this thread

http://www.crohnsforum.com/showthread.php?t=2790

A brief synopsis is that, at six months, this put patients into remission 60% of the cases, Vs about 36% using the traditional step up approach. The step up approach is very conservative... you start off at the lower 'risk' meds N gradually promote to drugs involving more risk (tho known) and hope for the best. however, the double whammy (my term) approach seems to take it for granted that patients will inevitably face/use these higher risk drugs eventually... but doing so the traditional fashions means their chances of success are considerably lower. So, your doctor isn't going off on a tangent; nor is he experimenting with your sons case, he simply is applying the latest medical technology to try to attain remission.

now, I've never been on Remicade (cost is just to great to even consider) but my GI and I have discussed it, and various forum member have been on it. There is a risk that a person who goes on Remicade, then comes off it, may not be able to go on it again due to anti-body development. It is not a certainty... there's a forum member who went on it, came off it, and went on it again. And there's another whose doctor is confident, by juggling the dosage... that they will be able to go off it, and go back on it again (tho it hasn't been put to the test as yet - I think?). I think as a matter of course MOST GI's are leery of attempting it.. the thinking being that once a patient is on it, better to keep than on it than run the risk of anti-bodies making going back on it a risky proposition. You need to fully discuss this with your doctor. A short term course of Remicade may just preclude your son from returning to it at a later date.. just when he might need it the most. If your doctor is planning to eliminate one of the two proposed meds, then it might be better to drop the 6-MP than the Remicade...

Why do I say that? Well, I haven't been on 6-MP (others on here have) but I was on Azathioprine/Imuran.. a form of the same family of drug but it has to be broken down by the body to produce 6-MP. I was only on it for 19 days when I developed severe reactions to it. Ended up in the ER with extreme pains, crippling in fact, and a rash that covered most of my body.
That ruled out the AZA route for me... but it also means I am spared the litany of potential side effects, long term reactions, and weekly bloodtests that go with it. Now, I may be biased (no maybe about it) but I would be reluctant to go with AZA or 6-MP over Remicade if the choice presented itself. Having said that, there are any number of members on here who've had long term use of 6-MP. Let them tell you their own stories, pro or con.

Anyway, hope this is helpful. Good luck with your son. Keep in touch, OK?
Thanks for your comments. It's good to know where my son's doctor may be getting his treatment proposals from.

Since my son has been in the hospital these past three days, we've had surgeons (for his abcess) and GI people coming to examine him. It's frustrating because it seems that no two people give us the same answer, and it's hard to figure out who is the definitive one who is oveseeing his care here (if there is such a person).

One GI doctor wasn't aware that his primary GI (the GI that he's been seeing on a continuing basis the past four months) wants him to use 6mp and remicade at the same time. She said that usually you go with 6mp or Imuran first and only try remicade if other drugs fail.

From what I can tell, in terms of risk of other ailments, all three drugs - 6mp, Imuran, and Remicade - all seem like they share a small risk of very serious illness.
 
butt-eze said:
There isn't an easy answer. I have tried AZA (which metabolizes into 6-MP) and I've tried Remicade.
It's true that your body will most likely develop a resistance to the affectiveness of Remicade if you start and then discontinue. At a recent conference the presenting doctor said once you start you shouldn't stop unless you plan on never using it again. Remicade works for a lot of people but loses it's affectiveness sometimes.
As for 6-MP this drug affects your liver (sometimes!). If it works it can help a great bit but if it doesn't it can cause nausea, vomiting, diarrhea, etc.

I would ask your doctor why they haven't used prednisone to stop the inflammation and induce remission.

I would also caution against starting two drugs at once. If your son is induced into remission you wouldn't know which medication worked. And that goes for the opposite argument. If he has a severe reaction you won't know which medication to discontinue. This was described to me by one of my amazing doctors.

At one point in time I was on chemotherapy (pill form) and low dose steroids. My doctor let me choose which to discontinue first. However, he warned against stopping both because if I had a relapse then we wouldn't know which medication to start up again. I hope this is making sense.

Have you tried prednisone? Many people hate it for it's long term side affects but it is usually the best option in reducing remission. Remicade and 6-MP can take time to kick in.

Hope this helps.
That's a good point - thanks for raising it. If my son has an allergic reaction, or if he responds favorably, how would we know which of the two drugs was responsible.

I'm also a little disapointed that they don't seem to be considering putting him on budesonide for a short period of time - I thought that would have potential to reduce inflammation and bring him to remission.
 
I think I recall that one of the GI doctors that we met in the hospital said that steroids can, or do, inhibit growth. I thought that steroids were what some athletes took to promote growth? (or maybe to promote muscle growth, which is not the same thing?)

(I'm still trying to figure out why the doctor is not keen on budesonide.)
 

Kev

Senior Member
Well, the GI who expressed the point that 'usually' you only go with 1 drug and add to the arsenal is describing the traditional 'step up' or 'ramp up' method... He/she may be unaware of the recent Canadian and European studies; or may discount them... (are you folks Americans by chance? There is a long standing tradition within medical communities not to readily adopt new treatment regimens stemming from outside their borders. This is not a condemnation of the US medical system... it happens globally. One of the biggest examples of this was the treatment of ulcers. australia lead the way in treating it with anti-biotics, with great success, while various of other countries continued to treat in the traditional manner, much to the loss of the patients.. I know.. my Dad was one of them.. But, I digress). Or this may seem too new, too risky.. I dunno either his motives or reasoning.

As for the risk... unfortunately... the immuno suppressors and biologics do carry a certain level of risk.. For example, when I initially looked at Imuran (AZA) I was terrified by the risks associated with that drug. But a 2nd look showed me the actual numbers.. the real AMOUNT of risk, is generally small.
today, doctors have to advise patients of ALL the risks (we live in a lawsuit happy environment.) sometimes to the point where we focus on just the risk AND not the potential gains. If one looks at the numbers of this study, it seems to present a very significant increase in the odds of a good result.
What... 60% vs 36%.. a 40% better chance of attaining a remission. Those are significant numbers. I wouldn't jump to discount those based on any of the risks associated with either drug. Like I noted before, it is almost, welll a 'certainty' that your son will take 'both' of these drugs (or similar) at some point in his lifelong battle with this disease... I hope that doesn't seem too cruel.. But, from someone with this disease... I think its realistic.

As for steroids... I made the same assumption. Thought steroids were all the same. The illegal ones the athletes use are anabolic... ours are close, but distinctively different. Your son may gain weight... improve dramatically... but suffer any number of immediate side effects on pred. If you search the forum.. think you find a diverse line-up of pred stories. In my case... I loved the short term benefits.. made me feel almost normal. I had some short term side effects, some withdrawal symptoms, and some major flare-ups. Came to sort of a love/hate relationship myself. I loved how it almost made me feel superhuman.. but I hated the mood swings, the withdrawal. and in every case.. the apparently inevitable return of my disease. Think that's the worst part. It's only real use is as a short term, stop gap fix to draw you out of a bad place... which tapering off of slowly can put you right back into. I was on pred for a total of 11 out of 12 months.. and I had to have bone density screening to see if osteoporosis had set in. My doctor is extremely reluctant to put me back on it, and I'm not crazy about the idea either. But, in an emergency, you do what you've got to do.

As for the case of which of the two meds 'CAUSE' the remission, it really isn't vital. since their is such a significant increase in good results, then its quite likely the combo that does it. As for which might cause 'negative' problems... well, I know that on AZA/Imuran, I had to undergo weekly blood tests... they were looking for specific indicators, liver function, that sort of thing... And, when I encountered issues, taking me off stopped the problem within 2 days. So, if there was a problem, and your son was on the combo of remi & 6 MP, taking him off 6 MP would prove within 48 hrs. if it was the 6 MP or not. That would still allow him to continue the Remicade un-interupted. That in itself is a convenient safety factor. Anyway, I have nothing invested in promoting this new method... just trying to give a 'laymans' understanding of why your GI proposed it, and a link to the info as why he/she proposed it. I wouldn't want to be in your shoes deciding which route to go. And I won't even speculate as to what I'd do in them.

all the best, OK?
 
Kev said:
Well, the GI who expressed the point that 'usually' you only go with 1 drug and add to the arsenal is describing the traditional 'step up' or 'ramp up' method... He/she may be unaware of the recent Canadian and European studies; or may discount them... (are you folks Americans by chance? There is a long standing tradition within medical communities not to readily adopt new treatment regimens stemming from outside their borders. This is not a condemnation of the US medical system... it happens globally. One of the biggest examples of this was the treatment of ulcers. australia lead the way in treating it with anti-biotics, with great success, while various of other countries continued to treat in the traditional manner, much to the loss of the patients.. I know.. my Dad was one of them.. But, I digress). Or this may seem too new, too risky.. I dunno either his motives or reasoning.

As for the risk... unfortunately... the immuno suppressors and biologics do carry a certain level of risk.. For example, when I initially looked at Imuran (AZA) I was terrified by the risks associated with that drug. But a 2nd look showed me the actual numbers.. the real AMOUNT of risk, is generally small.
today, doctors have to advise patients of ALL the risks (we live in a lawsuit happy environment.) sometimes to the point where we focus on just the risk AND not the potential gains. If one looks at the numbers of this study, it seems to present a very significant increase in the odds of a good result.
What... 60% vs 36%.. a 40% better chance of attaining a remission. Those are significant numbers. I wouldn't jump to discount those based on any of the risks associated with either drug. Like I noted before, it is almost, welll a 'certainty' that your son will take 'both' of these drugs (or similar) at some point in his lifelong battle with this disease... I hope that doesn't seem too cruel.. But, from someone with this disease... I think its realistic.

As for steroids... I made the same assumption. Thought steroids were all the same. The illegal ones the athletes use are anabolic... ours are close, but distinctively different. Your son may gain weight... improve dramatically... but suffer any number of immediate side effects on pred. If you search the forum.. think you find a diverse line-up of pred stories. In my case... I loved the short term benefits.. made me feel almost normal. I had some short term side effects, some withdrawal symptoms, and some major flare-ups. Came to sort of a love/hate relationship myself. I loved how it almost made me feel superhuman.. but I hated the mood swings, the withdrawal. and in every case.. the apparently inevitable return of my disease. Think that's the worst part. It's only real use is as a short term, stop gap fix to draw you out of a bad place... which tapering off of slowly can put you right back into. I was on pred for a total of 11 out of 12 months.. and I had to have bone density screening to see if osteoporosis had set in. My doctor is extremely reluctant to put me back on it, and I'm not crazy about the idea either. But, in an emergency, you do what you've got to do.

As for the case of which of the two meds 'CAUSE' the remission, it really isn't vital. since their is such a significant increase in good results, then its quite likely the combo that does it. As for which might cause 'negative' problems... well, I know that on AZA/Imuran, I had to undergo weekly blood tests... they were looking for specific indicators, liver function, that sort of thing... And, when I encountered issues, taking me off stopped the problem within 2 days. So, if there was a problem, and your son was on the combo of remi & 6 MP, taking him off 6 MP would prove within 48 hrs. if it was the 6 MP or not. That would still allow him to continue the Remicade un-interupted. That in itself is a convenient safety factor. Anyway, I have nothing invested in promoting this new method... just trying to give a 'laymans' understanding of why your GI proposed it, and a link to the info as why he/she proposed it. I wouldn't want to be in your shoes deciding which route to go. And I won't even speculate as to what I'd do in them.

all the best, OK?
In the "Step" approach, what is the sequence?

Anti-inflammatories are first (pentasa, etc.)?

Then steroids second?

And antibiotics third?

Immune suppressants fourth (6mp, imuran)?

Then "biologic" (remicade)

Then Surgery?

(I figure that different doctors may favor some categories of medicines over what other doctors favor.)
 

Kev

Senior Member
Well, I don't know if there is a carved in stone progression or sequence to it.

My case was atypical. When the IBD was 1st discovered, it was extremely small (tho they only scoped the colon).. essentially a minor outbreak of a few inches... And I had all of these other problems going on that other doctors focused on 1st.. Like, severe pancreatitis, 2 major pancreatic cysts, and a wonky gallbladder that didn't seem to have anything typical wrong with it.. In the end, they guessed it was microscopic stones that just wouldn't show up in imaging. Anyway, my GI at the time mis-diagnosed the colon problem (something apparently easy to do) and put me on a course of anti-biotics. now, whether the my body reacted in an adverse way to the anti-biotics, or (latter seems more likely in hindsight) my condition just rapidly deteriorated, neither I nor the docs can determine. just that my 'minor' colon issue blossomed to life threatening one in a few months... leaving no choice but to remove 1 1/2 ft surgically.
Anyway, I've wandered off down memory lane, which is of no use to you.

in my case, the treatment regime started off with anti-biotics, then surgery.. Then 5-ASA (Pentasa, salofalk, asacol, etc).. then steroids, then Imuran/AZA with steroids, then back to steroids alone, then taper off steroids (3rd time).. then LDN with 5-ASA. Currently I'm on LDN n weaning off 5-ASA. If I hadn't gone on LDN, my next drug would have been metho. I have no insurance, so remicade or humira are just not factors in play for me. My reaction to Imuran/AZA made 6-MP too risky to even consider. So essentially, my only recourse at this stage should the LDN stop working is metho.. And metho has some serious potential issues, and a relatively low success rate. I think when doctors 'short list' the possible drug options; as an alternate to surgery (cause we only have so much GI tract to lose) they look at the potential side effects (short/long term) and the success rates. I think (discounting surgery for the moment, as it's a totally different beast) if "I" had to spitball it.. the sequence most commonly would go like this..

anti biotics.. but apparently only 20% success rate, low side effect risk
5-ASA.. jury is out, better for colitis than crohns, tried as a matter of SOP
pred.. Uusally works IF you get the dosage right, but only viable shortterm
immuno suppressors (other than s/t pred.). a wide variety of potential for side effects ,ranging from moderate to severe, about 60% AT BEST rate of success, ususally diminishing over time. I don't think its typical for any of these to go longer than a couple of years.. 6-MP, AZA, Methotrexate, etc.
Biologics.. Remicade, Humira, and now Cimzia.. Some refer to them as the drug of last resort; others as the medical gold standard of treatment. If you go past this group; they are no other drugs I'm aware of left to try. (except of course LDN.. but that is still too experimental for most docs).

Hey, forum gang, if I left any out, toss them in. My list is totally subjective AND I'm no doctor. Hey, i hardly even qualify as a 'layman'. Some members might dispute my 'ranking'. heck, I don't think even the drs agree on this...

It's easier to gamble on one's own life, than face decisions like this about our children. IF it were me deciding on what to do with my life, my battle with this disease.. (for example if LDN stopped working, and remicade was within my means, AND I hadn't had to disasterous results with Imuran) then I would take the chance on the 'combo' therapy. Given a choice between 36% chance of success, and a 60%, I'd go with the latter. And I'd pray. If I got my remission, and was offered a choice between which med to drop, I'd drop the 6-MP. Would either of these choices be easy? not in the least!

Guess what it comes down to is whether you trust the GI who has been in the lead handling your sons case? That's a question only you can answer.
From the outside looking in, I don't see anything in your posts showing him to have dropped the ball; or giving 'wrong' advice/suggestions. As for what he'd suggest IF you opt not to go the combo, he'd be best to answer that.
I somehow think that, based on the age of your son, he is giving it his best shot at giving you folks the best outcome. If not, he should've suggested the 'traditional' route that no one could 'fault' him on, see what I'm saying?
 
Kev said:
Well, I don't know if there is a carved in stone progression or sequence to it.

My case was atypical. When the IBD was 1st discovered, it was extremely small (tho they only scoped the colon).. essentially a minor outbreak of a few inches... And I had all of these other problems going on that other doctors focused on 1st.. Like, severe pancreatitis, 2 major pancreatic cysts, and a wonky gallbladder that didn't seem to have anything typical wrong with it.. In the end, they guessed it was microscopic stones that just wouldn't show up in imaging. Anyway, my GI at the time mis-diagnosed the colon problem (something apparently easy to do) and put me on a course of anti-biotics. now, whether the my body reacted in an adverse way to the anti-biotics, or (latter seems more likely in hindsight) my condition just rapidly deteriorated, neither I nor the docs can determine. just that my 'minor' colon issue blossomed to life threatening one in a few months... leaving no choice but to remove 1 1/2 ft surgically.
Anyway, I've wandered off down memory lane, which is of no use to you.

in my case, the treatment regime started off with anti-biotics, then surgery.. Then 5-ASA (Pentasa, salofalk, asacol, etc).. then steroids, then Imuran/AZA with steroids, then back to steroids alone, then taper off steroids (3rd time).. then LDN with 5-ASA. Currently I'm on LDN n weaning off 5-ASA. If I hadn't gone on LDN, my next drug would have been metho. I have no insurance, so remicade or humira are just not factors in play for me. My reaction to Imuran/AZA made 6-MP too risky to even consider. So essentially, my only recourse at this stage should the LDN stop working is metho.. And metho has some serious potential issues, and a relatively low success rate. I think when doctors 'short list' the possible drug options; as an alternate to surgery (cause we only have so much GI tract to lose) they look at the potential side effects (short/long term) and the success rates. I think (discounting surgery for the moment, as it's a totally different beast) if "I" had to spitball it.. the sequence most commonly would go like this..

anti biotics.. but apparently only 20% success rate, low side effect risk
5-ASA.. jury is out, better for colitis than crohns, tried as a matter of SOP
pred.. Uusally works IF you get the dosage right, but only viable shortterm
immuno suppressors (other than s/t pred.). a wide variety of potential for side effects ,ranging from moderate to severe, about 60% AT BEST rate of success, ususally diminishing over time. I don't think its typical for any of these to go longer than a couple of years.. 6-MP, AZA, Methotrexate, etc.
Biologics.. Remicade, Humira, and now Cimzia.. Some refer to them as the drug of last resort; others as the medical gold standard of treatment. If you go past this group; they are no other drugs I'm aware of left to try. (except of course LDN.. but that is still too experimental for most docs).

Hey, forum gang, if I left any out, toss them in. My list is totally subjective AND I'm no doctor. Hey, i hardly even qualify as a 'layman'. Some members might dispute my 'ranking'. heck, I don't think even the drs agree on this...

It's easier to gamble on one's own life, than face decisions like this about our children. IF it were me deciding on what to do with my life, my battle with this disease.. (for example if LDN stopped working, and remicade was within my means, AND I hadn't had to disasterous results with Imuran) then I would take the chance on the 'combo' therapy. Given a choice between 36% chance of success, and a 60%, I'd go with the latter. And I'd pray. If I got my remission, and was offered a choice between which med to drop, I'd drop the 6-MP. Would either of these choices be easy? not in the least!

Guess what it comes down to is whether you trust the GI who has been in the lead handling your sons case? That's a question only you can answer.
From the outside looking in, I don't see anything in your posts showing him to have dropped the ball; or giving 'wrong' advice/suggestions. As for what he'd suggest IF you opt not to go the combo, he'd be best to answer that.
I somehow think that, based on the age of your son, he is giving it his best shot at giving you folks the best outcome. If not, he should've suggested the 'traditional' route that no one could 'fault' him on, see what I'm saying?
Our GI is okay, though he doesn't seem to have much time for my questions - I can't figure if maybe he doesn't like spending time discussing the details of the treatment, or if maybe he doesn't like being questioned by a nonmedical person.

Seems like the course of drug treatment has big ramifications and I don't want to be rushed into a decision.
 

Kev

Senior Member
Well, some docs have zero social skills.. no 'bedside' manner as it were. some see telling their patients, or their patients parents chapter N verse a waste of their prescious time... condescending SOB's. Others see it as a lose/lose proposition. Patients, family.. want 'hard' answers.. not in 'difficult', but as in 'this answer is carved in stone, not subject to debate or interpretation'. That's impossible given the highly subjective N volatile nature of this disease. I think, (but what do I know) that the very best a doc can offer is his best, educated guess. And that seems so inadequate.

Having said that... you pay for your doctors time. If he is short-changing you, then start looking around. You may find another, better GI. I did. As for how that will affect your son's outcome, who knows. As I speculated, I see nothing inherantly wrong with his suggestion about the 'new' method. In fact, just the opposite. I see it as an atypically 'brave' suggestion. I'd be interested to hear what he thinks of the LDN proposition... but that isn't on your folks agenda at the moment, and it isn't germaine. I'm just curious, OK?
 
J

jed

Guest
i've pretty much alway been at the hands of carpet bombing doctors, my treatment has gone along the lines of
(again, i'm from austrlia, so some meds may have slightly different names)

diagnose
pred & sulfasalazine
pred, sulfa & mesal
pred, mesal & imuran
pred, imuran & somthing else
pred, imuran & cyclosporin (big fail)
taper off all for a clean start
surgery - amazing change in quality of lifestyle
pred, plaquenil & methotrexate (unfortuneately i've developed arthritus from the auto immune disease, but in the last few days i think there is starting to be a big difference in that, haven't needed my walking stick for a few days now:))

like kev said, everyone has a diferent path, but we all seem to share the trial and error trail of this disease.


i also had a couple of doctors that appeared "to busy" for full explanations... NOT GOOD ENOUGH!!! in the end after lots of 50% advice sessions, i just didnt let them go untill i was done asking questions. your sons health is just as important as anyone else's, and its a damn site more important than their golf game.

if your attending hospitals, see if you can find a highly knowledged nurse, they're knee deep in this stuff all day and can be an endless source of information to you.

side effcts of the drugs we take always look shocking, but sadly, they do outweigh the consequences of not taking them. and we all have plenty of years ahead of us for the docs to come out with new meds with less side effects.

best wishes Dad.
 
Kev said:
Well, some docs have zero social skills.. no 'bedside' manner as it were. some see telling their patients, or their patients parents chapter N verse a waste of their prescious time... condescending SOB's. Others see it as a lose/lose proposition. Patients, family.. want 'hard' answers.. not in 'difficult', but as in 'this answer is carved in stone, not subject to debate or interpretation'. That's impossible given the highly subjective N volatile nature of this disease. I think, (but what do I know) that the very best a doc can offer is his best, educated guess. And that seems so inadequate.

Having said that... you pay for your doctors time. If he is short-changing you, then start looking around. You may find another, better GI. I did. As for how that will affect your son's outcome, who knows. As I speculated, I see nothing inherantly wrong with his suggestion about the 'new' method. In fact, just the opposite. I see it as an atypically 'brave' suggestion. I'd be interested to hear what he thinks of the LDN proposition... but that isn't on your folks agenda at the moment, and it isn't germaine. I'm just curious, OK?
I'm interested in the LDN but I thought it was still in clinical testing stages. It's being done by a woman physician at penn state university?
 
http://www.crohnsforum.com/showthread.php?t=3076

^^^check that out, it's not going a magic bullet in info, but it's' extremely in depth for just a few pages in length. Goes over a few of the key weapons in this "battle".


In the mean time I'm trying to find this sheet I've got somewhere burried that has like a "flow chart" that progresses through the "severity" of treatments for Crohns, it's here somewhere...........................
 
Benson to the rescue (as best I can).......






This is from "U.S. Pharmacist" in January 2007, a magazine my mom receives. It's slightly confusing if you're not familiar with such a "design" but if one is moderately 'normal', should be simple enough to follow the arrows I guess....Hope it puts some perspective to it. As Kev said it's not a cut and dry sequence, but this hopefully gives a "visual" idea of the progression many physicians will undergo....

One thing I'd like to amend here, is that the Infliximab (Remicade) step that precedes surgery is not the last hope before surgery, as I believe it was one of the only proven biologics at the time, or they may mean that Humira is with it, also there's Cimzia, etc....If this order was followed to the 'T', then I'd have had the scalpel by now, as I'm not really responding to Remicade so far, but a higher dose may be considered in my case next.
 
Last edited:
BWS1982 said:
Benson to the rescue (as best I can).......






This is from "U.S. Pharmacist" in January 2007, a magazine my mom receives. It's slightly confusing if you're not familiar with such a "design" but if one is moderately 'normal', should be simple enough to follow the arrows I guess....Hope it puts some perspective to it. As Kev said it's not a cut and dry sequence, but this hopefully gives a "visual" idea of the progression many physicians will undergo....

One thing I'd like to amend here, is that the Infliximab (Remicade) step that precedes surgery is not the last hope before surgery, as I believe it was one of the only proven biologics at the time, or they may mean that Humira is with it, also there's Cimzia, etc....If this order was followed to the 'T', then I'd have had the scalpel by now, as I'm not really responding to Remicade so far, but a higher dose may be considered in my case next.
Wow - thanks for the great chart. I'll study it closely tomorrow.
 

Kev

Senior Member
Great logic chart... and, of course, a doc may follow some or all of it, then you have to factor in where you are in one logic path; but the severity of your diagnosis changes... and suddenly you are going down a different path.

As for LDN, there was 1 study done, with eye catching good results, better than those common to the drugs in the logic chart. But it was only 1 study so a second is in the works. I went that route as it had better numbers, and it lacked the serious side effects. Oh, and you aren't living with a med modified immune response... Naltrexone has been around for decades, so it isn't one of those new wonder drugs that comes out, and then a few years later is withdrawn for some shockingly, overwhelming, compelling reason. It takes a 'special' practictioner to prescribe it, it can be harder to source, and it can take weeks, even months to work. And you can't combine it with other traditional meds that suppress the immune system. Having said that, the worst case results it gives match those of the new combo treatment.
And the best case results (from the first study) are 89 percent. Three of the members of the forum have tried it.. myself, DBergy and KillerZoey. Dan and I seem to be doing very well on it..., KZ no longer posts on this forum.
 
mike said:
Hi Dad 01, I've had quite a few docs try to rush me out without answering questions. It can be very helpful to write down a list of your questions. When I didn't do this I always seemed to forget a lot of them in the heat of the moment. Hope this helps. - Mike
Good advice. I've been doing that.
 
Kev said:
Great logic chart... and, of course, a doc may follow some or all of it, then you have to factor in where you are in one logic path; but the severity of your diagnosis changes... and suddenly you are going down a different path.

As for LDN, there was 1 study done, with eye catching good results, better than those common to the drugs in the logic chart. But it was only 1 study so a second is in the works. I went that route as it had better numbers, and it lacked the serious side effects. Oh, and you aren't living with a med modified immune response... Naltrexone has been around for decades, so it isn't one of those new wonder drugs that comes out, and then a few years later is withdrawn for some shockingly, overwhelming, compelling reason. It takes a 'special' practictioner to prescribe it, it can be harder to source, and it can take weeks, even months to work. And you can't combine it with other traditional meds that suppress the immune system. Having said that, the worst case results it gives match those of the new combo treatment.
And the best case results (from the first study) are 89 percent. Three of the members of the forum have tried it.. myself, DBergy and KillerZoey. Dan and I seem to be doing very well on it..., KZ no longer posts on this forum.
Is LDN approved for use by children in the United States? Is it still in clinical testing?
 

Kev

Senior Member
Naltrexone is NOT approved for the treatment of any form of IBD in anyone as of now... AND MAY NEVER be. My understanding is the manufacturer 'could' apply for such approval, but they would have to fund the studies, and also be 'accountable' for any health issues arising thereafter. And Naltrexone is so old it is available in generic form, so the manufacturer no longer enjoys exclusive rights... AND the cost of the drug has plummeted.
There is simply nothing for the maker of Naltrexone to gain by seeking any approval. However, if privately funded studies, such as the initial n latest ones CONVINCE enuff doctors to use this method, they can do so without risk. It is both legal AND ethical for a doctor to prescribe a registered drug for purposes outside the scope it was originally tested N approved for. This practice is called 'off label' prescribing. The doctors who are prescribing it now do so at some risk... if there were an adverse reaction, it could be a bit easier for them to be sued... tho not a certainty they would lose, but it does cause concerns in some. And, other, more conservative doctors may see their actions as too risky, despite the fact that this drug has been used extensively for years at substantially higher dosages for other things.
So, even if this new study confirms N validates the original, the likelihood it will mean 'Naltrexone'.. the LDN treatment, is approved by the FDA for IBD is highly unlikely. However, the probability it will become more accepted in the GI field in the treatment of IBD is very likely. It is growing in strength now... w/o the 2nd study having been completed. My GI put another of her patients on it. based on the early success with my case. Keep in mind that 'my' case was uniquely 'desparate'.. I imagine the other one is as well.

Essentially, of the two drug choices I had left, metho or LDN.. Metho has a much lower chance of success... AND a considerable risk of a bad outcome in relation to very adverse reactions/side effects. It isn't a very nice drug.

LDN, on the other hand... bore remarkable odds of success based on one study... had literally no discernable risks of side effects worthy of concern,
and the only risk to me was literally that I'd be in the 11% - 40% of cases where it didn't work... And to her, that her peers might judge her as a big risk taker... the risk to her practice N reputation FAR, FAR exceeded any to me. And if one looks outside the realm of just IBD treatment, then LDN is wreaking 'miraculous' benefits in cases of MS, cancer, and now even ALS.
 
Kev said:
Naltrexone is NOT approved for the treatment of any form of IBD in anyone as of now... AND MAY NEVER be. My understanding is the manufacturer 'could' apply for such approval, but they would have to fund the studies, and also be 'accountable' for any health issues arising thereafter. And Naltrexone is so old it is available in generic form, so the manufacturer no longer enjoys exclusive rights... AND the cost of the drug has plummeted.
There is simply nothing for the maker of Naltrexone to gain by seeking any approval. However, if privately funded studies, such as the initial n latest ones CONVINCE enuff doctors to use this method, they can do so without risk. It is both legal AND ethical for a doctor to prescribe a registered drug for purposes outside the scope it was originally tested N approved for. This practice is called 'off label' prescribing. The doctors who are prescribing it now do so at some risk... if there were an adverse reaction, it could be a bit easier for them to be sued... tho not a certainty they would lose, but it does cause concerns in some. And, other, more conservative doctors may see their actions as too risky, despite the fact that this drug has been used extensively for years at substantially higher dosages for other things.
So, even if this new study confirms N validates the original, the likelihood it will mean 'Naltrexone'.. the LDN treatment, is approved by the FDA for IBD is highly unlikely. However, the probability it will become more accepted in the GI field in the treatment of IBD is very likely. It is growing in strength now... w/o the 2nd study having been completed. My GI put another of her patients on it. based on the early success with my case. Keep in mind that 'my' case was uniquely 'desparate'.. I imagine the other one is as well.

Essentially, of the two drug choices I had left, metho or LDN.. Metho has a much lower chance of success... AND a considerable risk of a bad outcome in relation to very adverse reactions/side effects. It isn't a very nice drug.

LDN, on the other hand... bore remarkable odds of success based on one study... had literally no discernable risks of side effects worthy of concern,
and the only risk to me was literally that I'd be in the 11% - 40% of cases where it didn't work... And to her, that her peers might judge her as a big risk taker... the risk to her practice N reputation FAR, FAR exceeded any to me. And if one looks outside the realm of just IBD treatment, then LDN is wreaking 'miraculous' benefits in cases of MS, cancer, and now even ALS.
Thanks for the background - the very interesting history - on the LDN.
 
Kev said:
Naltrexone is NOT approved for the treatment of any form of IBD in anyone as of now... AND MAY NEVER be. My understanding is the manufacturer 'could' apply for such approval, but they would have to fund the studies, and also be 'accountable' for any health issues arising thereafter. And Naltrexone is so old it is available in generic form, so the manufacturer no longer enjoys exclusive rights... AND the cost of the drug has plummeted.
There is simply nothing for the maker of Naltrexone to gain by seeking any approval. However, if privately funded studies, such as the initial n latest ones CONVINCE enuff doctors to use this method, they can do so without risk. It is both legal AND ethical for a doctor to prescribe a registered drug for purposes outside the scope it was originally tested N approved for. This practice is called 'off label' prescribing. The doctors who are prescribing it now do so at some risk... if there were an adverse reaction, it could be a bit easier for them to be sued... tho not a certainty they would lose, but it does cause concerns in some. And, other, more conservative doctors may see their actions as too risky, despite the fact that this drug has been used extensively for years at substantially higher dosages for other things.
So, even if this new study confirms N validates the original, the likelihood it will mean 'Naltrexone'.. the LDN treatment, is approved by the FDA for IBD is highly unlikely. However, the probability it will become more accepted in the GI field in the treatment of IBD is very likely. It is growing in strength now... w/o the 2nd study having been completed. My GI put another of her patients on it. based on the early success with my case. Keep in mind that 'my' case was uniquely 'desparate'.. I imagine the other one is as well.

Essentially, of the two drug choices I had left, metho or LDN.. Metho has a much lower chance of success... AND a considerable risk of a bad outcome in relation to very adverse reactions/side effects. It isn't a very nice drug.

LDN, on the other hand... bore remarkable odds of success based on one study... had literally no discernable risks of side effects worthy of concern,
and the only risk to me was literally that I'd be in the 11% - 40% of cases where it didn't work... And to her, that her peers might judge her as a big risk taker... the risk to her practice N reputation FAR, FAR exceeded any to me. And if one looks outside the realm of just IBD treatment, then LDN is wreaking 'miraculous' benefits in cases of MS, cancer, and now even ALS.
I ran across this web site mentioning LDN and clinical trials. Maybe this is something hopeful, in gaining attention?

http://www.lowdosenaltrexone.org/ldn_trials.htm
 

Kev

Senior Member
Yeah, I'm a member of that forum, as is KillerZoey. Altho I found it useful in my getting started on LDN, and the staff there will answer any question you raise, I find it lacks the atmosphere that I've found here. There are a number of 'anecdotal' stories on there about the success folks have had in treating IBD (and a myriad of other diseases) using LDN. One that springs to mind was a 3 yr old diagnosed with Crohns, and non responsive to all of the traditional measures. Course, these are anecdotal; as are mine N Dans success with this treatment. One of the biggest draws/lures that LDN can offer is the lack of long term side effects, adverse reactions, complications arising from the other meds that are out there, and it's high success marks.
 
Kev said:
Yeah, I'm a member of that forum, as is KillerZoey. Altho I found it useful in my getting started on LDN, and the staff there will answer any question you raise, I find it lacks the atmosphere that I've found here. There are a number of 'anecdotal' stories on there about the success folks have had in treating IBD (and a myriad of other diseases) using LDN. One that springs to mind was a 3 yr old diagnosed with Crohns, and non responsive to all of the traditional measures. Course, these are anecdotal; as are mine N Dans success with this treatment. One of the biggest draws/lures that LDN can offer is the lack of long term side effects, adverse reactions, complications arising from the other meds that are out there, and it's high success marks.
One reason our GI gives for 6mp and remicade is that it helps fistulas. I don't know what the data is on that.

Does LDN pertain to fistulas at all?
 

Kev

Senior Member
I don't think there's a pat answer to that. Fortunately, my name isn't Pat. ;-)

LDN does not approach the treatment of IBD in anywhere near the manner of all the other drugs. They lower the immune response, or block TNF, whereas LDN tries to stop the over-reaction of the immune response. Since fistulas derive their existence from the over active immune response, destroying the good biotics YET allowing the bad to flourish, eat thru the mucosa layers... multiply N tunnel their way thru living tissue.. IF one can stop the improper immune response, force it to revert to it's natural destiny via LDN, then slowly the body's own defense system SHOULD heal fistulas. The issue then becomes... well, you've got a healthy immune system, say you had a wound in your body the length N width of a cigarette, for example. There is still the time factor it would take to heal, plus any/all opportune secondary infections, complications arising from it's location, ones personal hygeine.. that sort of thing. LDN wouldn't miraculously address any of these issues. It would just stop your immune system from going wonky and making a slow to heal wound a potentially ever growing major health issue.
That's just my grasp of the LDN scenario vs the traditional IBD medicines.
 
Top