Remicade treatment question

[dad_01]

I have a question about remicade treatments.

My 11 year old son received his first remicade treatment this week (the bottle said "remicade INJ 140 MG 264 ml"). My question pertains to the theory behind how the remicade is given.

My son's first treatment took place this week. In two weeks he is scheduled to receive a second remicade treatment. Then, after a longer period of time, he'll receive a third treatment (and so on).

Just wondering what the theory is behind this expanding length of time in how remicade is given.

Thanks.

 

[RHOV]

I'll try to answer to the best of my ability...

The treatment schedule is meant to introduce the drug into your son's system. It gives a big jolt of medication over short period of time to kind of ramp up its effectiveness and get his body used to it. The second infusion will be 2 weeks after the first, and the 3rd infusion 4 weeks after the second. After that, all the infusions will be every eight weeks. The effects wear off after a while, so sometimes Remicade is given more or less frequently depending on how the patient responds to it. In general, it is given every eight weeks except for the initial introduction period where more aggressive administration needed.

I hope Remicade works well for your son! I felt better within days of my first infusion and I've been told I could be a "poster child" for Remicade.

 

[dad_01]

I'll try to answer to the best of my ability...

The treatment schedule is meant to introduce the drug into your son's system. It gives a big jolt of medication over short period of time to kind of ramp up its effectiveness and get his body used to it. The second infusion will be 2 weeks after the first, and the 3rd infusion 4 weeks after the second. After that, all the infusions will be every eight weeks. The effects wear off after a while, so sometimes Remicade is given more or less frequently depending on how the patient responds to it. In general, it is given every eight weeks except for the initial introduction period where more aggressive administration needed.

I hope Remicade works well for your son! I felt better within days of my first infusion and I've been told I could be a "poster child" for Remicade.

Thanks for your answer. My son actually doesn't have what seem to be the more common symptoms of crohns. He hasn't had diahrea problems or stomach pain problems. For him, he mainly presents with growth failure.

So, for better or for worse, he doesn't have symptoms for which we can see quick results.

His doctor also wants to add 6mp to the regimen in a few weeks.

 

[Jeff D.]

I would be wary of 6mp and remicade. My doctor didn't want me to take it because he said it had a high risk of cancer. I'm not 100 percent on that as pretty much everything in this world will greaten your chance of cancer.

 

[dad_01]

I would be wary of 6mp and remicade. My doctor didn't want me to take it because he said it had a high risk of cancer. I'm not 100 percent on that as pretty much everything in this world will greaten your chance of cancer.

That is a scarey thing to me. I'm not positive but I think I've seen reports of higher cancer rates, including lymphoma, associated to both remicade and 6mp.

I think the remicade / 6mp combo is tied to some study that suggested that an aggressive treatment like that can be beneficial to crohn's patients (I think Kev, on this bulletin board, may have also mentioned that).

Of course, getting crohn's under control, but dying of a side effect, could be of questionable benefit.

One thing that I'm concerned about is that my son's GI is connected with a remicade study. It could be good and it could be bad - good in that the assumption is that the doctor is up to date with his knowledge of remicade but bad wiht respect to wondering if he has an interest in his study that may not correspond with my interest in my son's health.

I presume that one way doctor's get famous and can get stature is by conducting studies that get published in the journals of their field. I wouldn't want to think that my son is part pawn in this so he has enough participants for his study. If my kid later gets cancer, well - no skin off the doctor's back; he's famous because he conducted a study that found something. (Not to be blunt about it but everyone's got their own motivations.)

P.S.: I want to be clear - I'm not citing anyone - including Kev - is necessarily supporting remicade and 6mp at the same time (as of right now I know very little about it myself) - just that it apparently is based on a particular study. For the time being, we're taking my son's GI's suggestion and am proceeding with it but, as with everything, is subject to our re-evaluation.

 

[BWS1982]

Both Remicade and Azathioprine (Immuran & 6MP) have increased instances of fatal lymphoma (cancer). I'm on both and it freaks me out, no matter how minscule the increase is above normal, as I've got TWO meds' side effects in my system as long term treatments for something the paperwork I have says is "usually fatal"....doesn't help my negativity...if possible I will try in the future to get off my Immuran, if the Remicade can get things on track, I don't like the Immuran sides/risks and I have doubts if it's doing anything that's worth it's risks, or even anything at all for that matter, despite reading that Immuran together with Remicade can be very effective as a "team"...

 

[Jeff D.]

Yeah I was on 6mp for years and never noticed it actually helping me in any way. I felt better when I exercised but once winter came along I would feel like absolute crap again and the cycle would continue. Remicade helped me a lot but I have also just gotten an abscess while being on it which has delayed me taking Remicade for a while. I'm hoping I can get back on it soon but I can only hope for the best now that I haven't had the stuff in my system for almost three months now.

 

[Kev]

I think a lot of the 'fear' that stems from researching the immuno suppressants we are forced to take.. comes from a variety of mis-assumptions, or mistaken first impressions.. or from a wealth of mis-information. I think a 'majority' of the studies dealing with the long term implications of a lot of these drugs were of folks on higher dosages... for treating things like Leukemia, or for transplant recipients.. and not for the specific treatment of IBD. I also think that, when you dig deep enough to see the actual numbers, they are marginal, fractional.. at worst. And not something to lose sleep over. I wonder if one compared the odds of these to being struck by lightning, which one would rank higher. does that mean you stay indoors every day it clouds over? I don't mean that one should off-handedly dismiss the risk... just that you must try to put it in its proper perspective. There is a risk. But the IBD is real. It's here and now, and the best bet is to put the IBD in remission as soon as possible for as long as possible. and these drugs... they don't seem to come with a long time guarrantee. 2 years, 3 years, 5 years.. that seems to be a common length of time before they stop working. Now, whether it is 'safer', as far a risk of someday developing lymphoma, to take these separately for an indefinite period... first 'A' for X number of years, then 'B' for a similar period when 'A' stops working.. OR to take them in conjunction with better odds of getting a remission.. Well, life is a gamble, but if the goal is to get the remission, it would appear.. if you are going to gamble.. and the risk of lymphoma is just about the same combined or separated by a couple of years, you might just as well shoot for the moon. Or is that my 'mis-adjusted' faulty logic at work?

 

[dad_01]

I think a lot of the 'fear' that stems from researching the immuno suppressants we are forced to take.. comes from a variety of mis-assumptions, or mistaken first impressions.. or from a wealth of mis-information. I think a 'majority' of the studies dealing with the long term implications of a lot of these drugs were of folks on higher dosages... for treating things like Leukemia, or for transplant recipients.. and not for the specific treatment of IBD. I also think that, when you dig deep enough to see the actual numbers, they are marginal, fractional.. at worst. And not something to lose sleep over. I wonder if one compared the odds of these to being struck by lightning, which one would rank higher. does that mean you stay indoors every day it clouds over? I don't mean that one should off-handedly dismiss the risk... just that you must try to put it in its proper perspective. There is a risk. But the IBD is real. It's here and now, and the best bet is to put the IBD in remission as soon as possible for as long as possible. and these drugs... they don't seem to come with a long time guarrantee. 2 years, 3 years, 5 years.. that seems to be a common length of time before they stop working. Now, whether it is 'safer', as far a risk of someday developing lymphoma, to take these separately for an indefinite period... first 'A' for X number of years, then 'B' for a similar period when 'A' stops working.. OR to take them in conjunction with better odds of getting a remission.. Well, life is a gamble, but if the goal is to get the remission, it would appear.. if you are going to gamble.. and the risk of lymphoma is just about the same combined or separated by a couple of years, you might just as well shoot for the moon. Or is that my 'mis-adjusted' faulty logic at work?

I think figures I've seen or heard were something like a risk of cancer or lymphoma increasing from 4 or 6 per 10,000 to maybe 12 per 10,000, from what I think was long term use of remicade. I'm not sure what the definition of "long term" was in this case, or what the dosages were, or what any number of other relevant factors might have been, so it can be hard to access what the real additional risk is.

Of course, I guess this would be balanced against the risks of not getting treatment.

 

[saidinstouch]

Those numbers are so small that you can't really chalk it up to just remicade or 6mp use alone. Statistically you would probably obtain a p-value stating the numbers were insignificant if you modeled in genetic predispositions and environment. The remicade might increase the chance of developing lymphoma, but if its only in patients with a certain gene or environmental condition or lifestyle (which currently there isn't enough information to show) then the number going from 6->12 isn't really saying much except there is a minimal increased chance of developing lymphoma.

There is also the other aspect that TNF-alpha is responsible for regulating certain responses the body needs for cancer development, such as recycling DNA nucleotides. TNF-alpha has been shown to be present in higher numbers in tumor cells and that its presence is directly connected with increased transcription of genes responsible for recycling nucleotides to synthesize new DNA. Since tumor cells divide more rapidly, it is necessary for the upregulation of these enzymes. Inhibiting TNF-alpha should also slow a tumors ability to divide because the nucleotide recycling process would be greatly slowed.

Now, this information is 100% true and proven, except for the very last sentence (and only the part about tumor division being slowed, the nucleotide recycling process IS slowed by inhibition of these enzymes, so inhibiting an important factor for their transcription should have the same effect). However, it is a very logical step and in time could very well be proven. This could very well mean TNF-alpha inhibitors also play a roll in blocking tumor growth, but we don't know if this is true. My point here is basically that while there are side effects that have to be listed because they may or may not be present and we have a right to know about them, there are also benefits that may or may not be present that you don't always hear about simply because there just isn't enough information. I personally would rather be a little on the scared side from something that might exist just to be safe.

 

[RHOV]

Great, I'm on 6-MP as well as Remicade too. Screwed on 2 fronts. However, I highly doubt that the drugs will give me cancer. If anything will, it's my Nalgene water bottle...

Azothioprine didn't work for me, but my doctors have kept me on it for almost a year. they SAY we'll switch to something else soon... I think they're waiting until I'm stable on Remicade for a longer period of time. But I have a bunch of appointments coming up, so I think I'll bug them to start methotrexate soon. I hate taking medicine for no reason, especially with all the risks and possible side effects.

 

[BWS1982]

I'd like to get off my AZA too, if I can become stable on Remi, I have doubts it's pulling it's weight to offset risks...

 

[dad_01]

Great, I'm on 6-MP as well as Remicade too. Screwed on 2 fronts. However, I highly doubt that the drugs will give me cancer. If anything will, it's my Nalgene water bottle...

Azothioprine didn't work for me, but my doctors have kept me on it for almost a year. they SAY we'll switch to something else soon... I think they're waiting until I'm stable on Remicade for a longer period of time. But I have a bunch of appointments coming up, so I think I'll bug them to start methotrexate soon. I hate taking medicine for no reason, especially with all the risks and possible side effects.

My 11 year old son had his first remicade infusion last week and is scheduled for his second one in another week. He also will be starting 6mp.

 

[RHOV]

He'll be on the same meds that I am. Only I started Remicade after the azothioprine (6mp) failed.

How did your son's infusion go? I was a little anxious for my first one. I normally have a very low heart rate, and I was nervous and anticipant when they first put the cuff on me. But after the infusion started and I was sitting for a while, my bp dropped back to normal. It freaked the nurses out, which in turn freaked me out too! Now they know me as the one "with no heartbeat or temperature" because they always have a hard time getting my vitals!

Best of luck to your son!

 

[katiesue1506]

Yeah I had that too. My BP went down to 83/50 at one point and the nurse seemed ok with it... of course my moms freakin' out... I was just kinda sittin' there... it felt like everything was moving slowly.

 

[RHOV]

My doctor went so far as to order an EKG during one of my infusions. In the end, they determined that I just naturally have a low heart rate (I could have told them that!). My pulse is usually 39-45 bpm.

 

[dad_01]

He'll be on the same meds that I am. Only I started Remicade after the azothioprine (6mp) failed.

How did your son's infusion go? I was a little anxious for my first one. I normally have a very low heart rate, and I was nervous and anticipant when they first put the cuff on me. But after the infusion started and I was sitting for a while, my bp dropped back to normal. It freaked the nurses out, which in turn freaked me out too! Now they know me as the one "with no heartbeat or temperature" because they always have a hard time getting my vitals!

Best of luck to your son!

From what I could tell his first infusion went okay. I don't really know what numbers to look for. I'd welcome any suggestions on what numbers to pay attention to next time (his second infusion is this tuesday).

 

[BWS1982]

Well one thing to keep in mind is the age of your son (obviously you know that), I don't think therefore, that my numbers would be something to shoot for for your sons numbers. Maybe one of the nurses could chime in on what you should look for for an eleven year old during an infusion.

My BP and especially my heart rate worried the nurses because the prednisone did such a number on my body, my heart was racing at like 120 beats at rest, which is NOT good. I had to go on Metoprolol just because of it, and I've always had an otherwise very healthy heart/cardio system. Now I'm off pred for 1 month, and the numbers are back in a normal range.

 

[RHOV]

I had to Google this one! One site said that 110-120/70-80 is the average blood pressure for an 11-year-old, with the average heart rate (pulse) anywhere from 50 bpm to 180 bmp.

Other sites had similar numbers, so even if your son is out of that range, he's probably fine. Heart rate and blood pressure is also affected by how active someone is (athletes have a lower resting heart rate) and how excited they are.

I think any major change in pulse and/or blood pressure during the infusion is something to pay attention to. I agree with Benson, though. The nurses can tell you exactly what is normal and what to look for!

I hope your son's next infusion goes well! How does he feel about them? Excited? Scared? Once you do a few of them, they get less stressful.

 

[dad_01]

I had to Google this one! One site said that 110-120/70-80 is the average blood pressure for an 11-year-old, with the average heart rate (pulse) anywhere from 50 bpm to 180 bmp.

Other sites had similar numbers, so even if your son is out of that range, he's probably fine. Heart rate and blood pressure is also affected by how active someone is (athletes have a lower resting heart rate) and how excited they are.

I think any major change in pulse and/or blood pressure during the infusion is something to pay attention to. I agree with Benson, though. The nurses can tell you exactly what is normal and what to look for!

I hope your son's next infusion goes well! How does he feel about them? Excited? Scared? Once you do a few of them, they get less stressful.

I think he's a little anxious about them, though not overly so; he knows all the possible side effects, both short term and long term.

Primarily he doesn't like missing school right now because there are a lot of special events and he feels like he misses a lot of them (he's missed some, though not all). We've reschedule his second infusion twice now to avoid a conflict with a baseball playoff schedule he has.

 

[RHOV]

Poor kid. I hate missing school too! But it sounds like he's still able to be active and "normal." Good for him!

 

[dad_01]

Poor kid. I hate missing school too! But it sounds like he's still able to be active and "normal." Good for him!

He likes sports a lot - he is involved in baseball right now - and I think it absolutely helps motivate him past all the discomforts of the treatments.

 

[Digits]

thtas really good! congrats he has something to get him through.

i was on remicade and 6mp along with Prograf for about 3 years, and no cancer! some really bad liver issues...but no cancer! i wish you all the best of luck though, i was diagnosed when i was 8 so its really scary that age. i was just always grateful (when i got older and could think about it) that i was daignosed so young, because my lifestlyles werent sat, and i could change my diet and lifestyle easily. when i meet adults who are just Dx'ed, they are devasted, and tryign to change habits theyve had for years at the same time.

 

[BWS1982]

Not to frighten anyone but my mom recently sent this to me, it's not breaking news about lymphoma, just a furthering of the risks......
-------------------------------------------------------------


FDA issued an Early Communication About an Ongoing Safety Review to
inform healthcare professionals that the Agency is investigating a
possible association between the use of Tumor Necrosis Factor (TNF)
blockers and the development of lymphoma and other cancers in children
and young adults. FDA is investigating approximately 30 reports of
cancer in children and young adults. These reports were submitted to
FDA's Adverse Event Reporting System over a ten-year interval, beginning
in 1998 through April 29, 2008. These reports describe cancer occurring
in children and young adults who began taking TNF blockers (along with
other immuno-suppressive medicines such as methotrexate, azathioprine or
6-mercaptopurine), when they were ages 18 or less, to treat juvenile
idiopathic arthritis, Crohn's disease or other diseases. Approximately
half of the cancers were lymphomas, including both Hodgkin's and
non-Hodgkin's lymphoma. Long-term studies are necessary to provide
definitive answers about whether TNF blockers increase the occurrence of
cancers in children because cancers may take a long time to develop and
may not be detected in short-term studies. Until the evaluation is
completed, healthcare providers, parents, and caregivers should be aware
of the possible risk of lymphoma and other cancers in children and young
adults when deciding how to best treat these patients.

Read the entire 2008 MedWatch Safety Summary, including a link to the
FDA's Early Communication About n Ongoing Safety Review of Tumor
Necrosis Factor (TFF) Blockers regarding this issue at:

http://www.fda.gov/medwatch/safety/2008/safety08.htm#TNF

 

[dad_01]

thtas really good! congrats he has something to get him through.

i was on remicade and 6mp along with Prograf for about 3 years, and no cancer! some really bad liver issues...but no cancer! i wish you all the best of luck though, i was diagnosed when i was 8 so its really scary that age. i was just always grateful (when i got older and could think about it) that i was daignosed so young, because my lifestlyles werent sat, and i could change my diet and lifestyle easily. when i meet adults who are just Dx'ed, they are devasted, and tryign to change habits theyve had for years at the same time.

Could I ask what kind of liver problems you had?

 

[Digits]

well, nothing i really noticed, just some pain, and more fatigue, didnt think much of it, until my doc looked at my monthly liver panels, and saw that my 6mp was metabolizing the wrong way (background: 6mp breaks down into 2 diff chemicals in your body (A and B we will call them) A is harmful to liver, B does nothing but good to your crohns. your body can either take all A, no B, or all B, no A, or a mix of the two. two of those are good, and the first one isnt good at all.) My B wasnt breaking down, therefore i was only getting the A chemical, so i had no good effects, just bad chemicals going after my liver.

the worst so far is that i had to undergo Iron transfusions, and monthly B12 injections, my body cant absorb and maintain those levels anymore. (but ive always been anemic) it just worsened it a lot. the Iron was okay, 5 infusions in a week and a half space (one every other day) for 2 hours, and the b12 is just a shot in the arm like a flu shot once a month, but it did scare me because an Oncologist now has to monitor my liver panels...dunno why.

but its a slight chance...as long as your son gets his bloodwork doneon time, and you trust your doc to contact you as soon as they know what anythings wrong.