Remicade dosage change question

Still waiting to hear about Stephen's last prometheus test and not expecting any issues but, as we've already had to increase the frequency once, I'd like some info upfront. I feel like I'm always one step behind and end up doing 'catch up' research AFTER decisions are made. :ybatty:

So my questions... if this last prometheus test shows that remicade levels are zero, and assuming also zero on antibodies, the GI would have two options relating to remicade - increase the frequency to 5 or 4 week intervals or increase his dosage (he's currently on 5mg).

Would this be a reason to add an immunosuppressant? ie would that help maintain remicade levels during the full six weeks?

What determines whether the dosage is increased or the frequency increased? Is anyone aware of any info illustrating that one choice is more successful than the other?

Also, is the dosage always upped from 5 to 10mg (which I believe is the max dosage)? Or are smaller increments used when increasing?

Thanks

Tesscorm,

I thought that one of the article's David posted mentioned something in relation to your question but so far all I have found is this:

For people on Remicade who start to lose response and are negative on antibodies but have no or no detectable serum levels of the medication, increasing the dose or shortening the interval may work well.

Click to expand...

source

This article come from a book he was going through, here is a thread with all the articles from it he has posted so far:
http://www.crohnsforum.com/showthread.php?t=36155

There may be more information in one of the articles he's posted links to in that thread.

C is already at the higher dose and at 6 weeks plus 7.5 mtx, the GI did say when he added MTX back that he was hoping for a synergistic effect to give the remi a boost but I'm not sure how that applies to Stephen's situation.

Regarding the dosage -my daughter was on 5mg and then her dose was increased to 7.5mg and then 10mg. If your son responds at 7.5mg, I don't think they'll need to increase it further.

I think it depends on the doc and their preference but O's doc shortened interval first and then went up to 10. I have seen people on 7.5 but really he is an adult now and adult dose is 10. O's doc doesn't like 4 week infusions. I don't know why but he did tell me if we got to that point he would rather add Mtx with 5 week schedule.

I don't think burning through the Remicade is a reason to add immunosuppressants as they won't stop that process. Some do help with the building of antibodies (although the jury is debating that of late). Maybe if you have gone through all your options and shortened as much as possible and increased as much as possible an added immunosuppressant will give some added protection for that few days or week where there is no Remi but that is just my guess.

If it were up to me as a mom, I would have opted for the higher dose (as our doc explained the higher dose doesn't increase risk) and less frequency. It is just so hard for them to miss school every 5 weeks.

DS went from 5mg every 6 weeks to 7.5 mg every 6 weeks .
Our go doesn't like every 4 weeks either.
Rheumo wanted 5mg every 4 weeks.
Instead of 10 mg every 8 weeks.
So it does vary .

We were told DS was burning through it since his body was essentially fighting against the remicade ( but no detectable antibodies per the test).
Dermo said basically the test is only good for the known antibodies ( at this time)
And needing a higher dose more often meant his system really was fighting it.

Good luck
Hope the numbers work out this time

Tess,
For us they never increased the dose just the interval. I would think since he is a finished growing and adult size they would give him the adult dose.

Thanks everyone, it seems that it may simply go back to a GI's opinion based on their experiences?? But, I would've expected that there would be some sort of protocol or, at least, studies on benefits of increasing dose vs. frequency???

I would think keeping a lower dose at greater frequency would keep the levels more consistent (ie as MLP's rheumo suggested) but, certainly less convenient! While S hasn't complained much about the 6 week schedule, I know he would start complaining if it was any more frequent.

I did find one study, on patients with RA (rather than crohns) and, if I understand it correctly, it seems to imply there is greater success with increasing frequency rather than dose. But, to be honest, I'm not completely sure I understood all they said.

http://informahealthcare.com/doi/abs/10.1080/03009740701416758

Conclusion: Infliximab dosages and dosing frequencies are increased frequently in clinical practice: after 3 years, only 42% of patients continued on the original schedule. While frequency increases appear to result in better effect persistence between infusions, the gains from dosage increases are small and may not be better than chance. These data suggest that the total amounts of infliximab needed to obtain satisfactory disease control are greater than the amounts suggested by the original dosing recommendations, and may have bearing on pharmaco‐economic issues pertaining to treatment with infliximab and other therapeutic agents.

Thanks everyone!

Do you have the results yet Tess?

I can see where increasing the frequency would have benefit over increasing the dosage.

Dusty. xxx

I did get results - remicade levels good and no antibodies. But, not sure if I posted this?? maybe??... He also had his annual check-up on the same day and I received the results from those tests as well.

I'm not hugely concerned yet... but, I wasn't happy with the results (but don't want to jump the gun yet...)

His ESR was up to 33, was 2 in August.
His CRP was up to 2.9, was 2.3 in August (under 5 is our norm)
His HGB dropped a bit to 141 from 148 in August (still in normal range though)
His WBC rose to 9.8 from 6.3 in August (under 11 is our norm)

Nothing else was outside of normal nor showed any real change.

I spoke with the GI's assistant, told her I was concerned about the ESR and that I was forwarding the results to her/GI. She offered to have the tests rerun right away but, as Stephen's not showing any outward symptoms, I suggested waiting until his next infusion to run the tests (Nov. 23). He did have a cold/sore throat a week before these tests were run so I'm hoping it's just the cold affecting the ESR and WBC and by waiting until Nov. 23, it'll be enough time for the ESR to drop (if it's only related to the cold). (Do you agree??)

I did see Stephen today and he looks good and says he feels fine... then again, even with the ongoing inflammation he had until starting remicade, he rarely showed outwards signs... so, how he feels isn't really a great indicator.

So for now, just in 'wait and see' mode...:shifty-t:

Good to hear the Remicade results are good!

I agree Tess, nothing jumps out as bad, IYKWIM, so I too would give bloods that extra distance before repeating. Even if the ESR isn't back in NRR you will at least have a clearer idea of which way it is trending.
And I so hear you on the not happy results...yeah they aren't bad but still...you are so not alone Tess! :kiss:

Do you know where he is at right now with his Vit D, Magnesium and Zinc levels?

Dusty. xxx

It certainly does get easier but the waiting for the 'other shoe to drop' is never too far away! :ybatty:

I don't have his zinc but others are:

B12 - 672 (was 587 in Aug)
D - 93 (this was from Aug, GP didn't include it in his Oct. test)
Magnesium - .78 (again, from August)

I go barefoot a lot these days. :ycool:

After much reading and consultation with David I am aiming for Matt to head up to 125 with his vit D. I assume you use the same value we do? nmol/L?
I have reached a point where I am not happy with him below 100 and he did start trending down over Winter so I have doubled his Vit D supplement to 4,000iu daily.
Since you are now coming into Winter I imagine Stephen will start trending down.

Matt's Magnesium has always been higher than Stephen's, about smack bang mid range. David feels that the the minimum NRR should be set at 90 and after reading links he provided I don't disagree. Now those links will be buried in my Matthew thread...:eek2:...but I imagine you will find them in the wiki.

Matt's Zinc was low when first tested 12 months ago so I am supplementing there as well.

The point to all this for the last 6 months or more Matt's CRP was trending up. Not high by any means but hey, you know the feeling. :hug: Nothing untoward happening that I could see just that the asterisk was creeping back in and boy do I hate that! Of course I did the one thing that you should never do and that was to make more than one change to his meds so I can't reliably say if one or indeed any of the changes made difference but last draw his CRP was right down to the lower limits of normal.

He had just had his GI appointment and Pentasa was added but only a very small dose 1grm daily. I also increased his Vit D to 4,000iu and doubled his Magnesium to one tablet twice daily. I am leaning toward this return to normal not being a fluke but rather the upping of supps. Maybe I just don't want to acknowledge that Pentasa may have played a part. :lol:

Dusty. xxx

I do remember Matts thread... It was actually his thread that prompted me to request that the vitamin levels be tested. The zinc?.. I did want that as well but not sure if I forgot to include it in my requests or if GI forgot to add it.

I'll have to watch his vitamin levels a bit more closely now. While he was on EN, he was getting 1500 calories per night so I was fairly assured that he was being well supplemented but it does make sense that some of his levels may be dropping now as he's only drinking 250-500 per day (and wouldn't surprise me if there have been days when he's completely forgotten to have even one shake... I much preferred that overnight NG tube!! :lol

It also did cross my mind that his crp was at 0.2 and 0.3 may to July and then rose to 2.3 in August... I started to gradually reduce the EN in the spring (didn't want to just suddenly reduce his caloric intake by 1500 cal/day), so by July he was already only taking 500 cal two-three nights per week and by August his crp rose to 2.3??? And then he left for school... So, now all I can do is regularly remind/ask him abt his shakes ??? But, maybe it's time for a few more reminders.

Tesscorm,

How much magnesium is there per shake he's drinking? And one shake is how many calories?

Hard not to try draw a line between his results and his changing EN Tess.

Dusty. xxx

Tesscorm said:

What determines whether the dosage is increased or the frequency increased? Is anyone aware of any info illustrating that one choice is more successful than the other?

Click to expand...

The first tests of Remicade for crohn's disease patients did use 10mg but it became apparent that lower doses are more effective than higher doses for whatever reason. (the immune system is complex, it's possible that TNF-alpha orchestrates the destructive inflammation but also keeps the disease in check, remicade binds to TNF-alpha on the cell surface whic is probably causing apotosis of the activated leukocyte, the effects of remicade would be over after a few hours if true, which makes a higher dosage pointless)

That first big study is the reason it is always 5mg as a standard dosage.

Many hospitals prefer to increase the frequency slightly because this way they can remain at a 5mg dosage (remicade has a 2 week half-life or something).

Just info, it's really not my place to say anything more, I'm not that aware of any changes lately.

David, I don't have one of his shakes with me now but, online, it shows that one Boost shake provides 36% of daily recommended and it's 240 cal. I do believe most days he has one or two shakes. However, when he was on the elemental formula, he was getting 335 mg magnesium/day, five times per week. 1500 cal/night.

Dusty, I agree with you that there's a good chance they are related. Also ties in with the study that kiny initially posted and I reposted in the kid's diet section, highlighting significantly improved remicade success when combined with 1200 cal/day of EN.

I feel a bit neglectful that I haven't been more on top of this, especially having questioned the correlation earlier but... With S away, my influence is limited and his GI has straight out said that he didn't believe the supplemental EN was doing anything to help Stephen! So, just makes it a bit tougher for me to convince Stephen of its necessity. :ymad:

Far too hard maintain influence when they are out of your sights Tess and as you say, when the GI isn't on the same wave length it makes the hard nigh on impossible. :ghug:

Dusty. xxx

Tess, as this study highlights, there is a correlation between magnesium intake and CRP. Just as with Dusty's Matt, I bet if you get him on a quality magnesium supplement, you'll see that CRP drop. It is REALLY HARD to get sufficient RDA with a western diet and I believe magnesium deficiency plays a part in the pathogenesis of some forms of Crohn's disease. If I'm correct about any part of the above, then the supplemental EN was absolutely helping Stephen.

Groups at Risk of Magnesium Inadequacy
Magnesium inadequacy can occur when intakes fall below the RDA but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body.
People with gastrointestinal diseases

The chronic diarrhea and fat malabsorption resulting from Crohn's disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time [2]. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss [2].

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From
http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/


I know DS feels better when he gets at least 3 peptamen a day ( 150 extra mg of mg).

Kid boost has 48mg per shake not sure on adult

My son's gi increased his dose from 5 to 7.5 this last time while maintaining his 8 week schedule. He has been on remicade for a year and believe he is in remission. The gi increased the dose as he was 76lbs when started a year ago and is now 106lbs. The dose was increased due to his weight gain as the gi said this would help maintain his dose to keep him in remission based on his increase in weight.
When I asked about it, the infusion nurse indicated some gi's hold the dose as long as things are going okay and some will increase it as ours did based on growth. I got the impression that at his weight, 10 would be the recommended dose, so he was still under.

kiny said:

The first tests of Remicade for crohn's disease patients did use 10mg but it became apparent that lower doses are more effective than higher doses for whatever reason. (the immune system is complex, it's possible that TNF-alpha orchestrates the destructive inflammation but also keeps the disease in check, remicade binds to TNF-alpha on the cell surface whic is probably causing apotosis of the activated leukocyte, the effects of remicade would be over after a few hours if true, which makes a higher dosage pointless)

That first big study is the reason it is always 5mg as a standard dosage.

Many hospitals prefer to increase the frequency slightly because this way they can remain at a 5mg dosage (remicade has a 2 week half-life or something).

Click to expand...

Kiny, do you know if the 5mg standard dose is true in the US as well? Can you provide the link for the lower dose? Hoping we do not regret this increase in dose. :eek2:

Thanks DustyKat, David, Tesscorm, and My Little Penguin on your discussion re Mg and shakes.

my little penguin said:

From
Kid boost has 48mg per shake not sure on adult

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H is still averaging one kids boost a day so it is good to know he is getting Mg thru that.

H also has Wellesse® Calcium & Vitamin D3, liquid supplement every day which includes
Amount Per Serving - % Daily Value*:
Calories 15, Total Carbohydrates 0 g - 0%, Sugars 0 g, Vitamin D3 1,000 IU - 250%, Calcium 1,000 mg - 100%, Magnesium 40 mg - 10%, Phosphorus 190 mg - 19%, Boron 250 mcg.
Unfortunately it also contains Corn Dextrose, Xanthan Gum, Potassium Sorbate (to preserve freshness), Sodium Benzoate (to preserve freshness), Sucralose, Carageenan, :eek2: Not thrilled with these ingredients, however it does taste really good(like an orange creamcicle) and he and his brother happily take it. A compromise in our world.

Thanks David, I will absolutely be following up on Stephen's vitamin intake (both with his compliance and the dosages in his supplements - shakes and others), particularly his magnesium and vitamin D. I will also ask his GI about zinc supplementation.

momoftwinboys - as with everything else in crohns, much seems to come down to a particular GIs preference, experience, etc. Stephen is 170-175 lbs and is at 5 mg. When on an 8 week schedule, there was no remicade left at 8 weeks so his schedule was shortened to 6 weeks. Last test did show 'adequate' remicade level at the six week mark so no change has been recommended. I wonder if weight is useful as a 'starting point' in determining dosage but following that, it becomes more dependent on the efficacy of the current dosage and a person's individual metabolism???

The dose is weight based in that
You get 5 mg per ever kg you weigh so if your weight increases you still get the corresponding amount period. The volume of remicade infused increases .
Or the mid dose is 7.5 mg/kg
High dose 10mg /kg

Some like 5 mg every 4 weeks instead of 10 mg every 8 weeks .
Depends on the doc

Yes.

5mg/kg should be standard in the US too for crohn's disease.

Here they measure the weight of the person, and then you decide the amount of remicade needed.

Infliximab comes in vials but they're usually 100mg vials, meaning there is 100mg diluted infliximab in the vial, they just take the vial and pull out 100mg with a syringe with a sharp needle so nothing gets contaminated, then they inject that into the bag to dilute it with water.

So let's say a person is 50kg and needs to get 5mg/kg. That would be 250mg, so if you check what the nurse is doing, he or she would take out 3 vials of 100mg, inject 2 in the bag, and measure half of another vial by looking at the markings on the syringe and inject that too, so they now have 250mg at 5mg/kg.

I was one of the first batch of people who got infliximab after the first studies (was never part of the studies, but got infliximab after them). Before infliximab all they had was imuran or antibiotics, if imuran or antibiotics didn't work it was surgery, so even though the doctor told me that they didn't know how infliximab really worked, I agreed to try it, since the alternative was surgery, which I didn't want.


To this day, they still do not understand what infliximab does for crohn's disease. It's a TNF-alpha blocker. The first explanation was simple, TNF-alpha is a cytokine, it increases inflammation, you remove TNF-alpha, it lowers inflammation and people get better.

That was a good explanation until they tried etanercept for crohn's disease, also a TNF-alpha blocker, just as effective in removing TNF-alpha as infliximab. It should work just as well as infliximab. Surpise..it's completely ineffective in treating crohn's disease, it works for other inflammatory diseases, it does not work for crohn's disease and was never used again for it.

Infliximab, when it binds to TNF-alpha, is able to cause apoptosis of active leukocytes (white blood cells), humira, while it hasn't been tested I think, is assume is doing the same thing. Etanercept doesn't do this.

Why this matters for crohn's disease they don't really understand fully yet, maybe infliximab is some kind of antibacterial, in the sense that it is destroying active leukocytes that are activated through bacteria and should have died through programmed autophagy or some other process. (autophagy abnormalities are present in crohn's disease, ATG16L1 = autophagy 16L1, NOD2 = able to activate ATG16L1, IL23 is related to autophagy too).

So, I think that's the reason why no one is fully clear on what to do when it comes to 5mg or 10mg or increasing the time between dosage. The standard dose should be 5mg, but the rest is up to the individual hospital and their interpretation of studies / knowledge about the disease and their own bias.

my little penguin said:

Some like 5 mg every 4 weeks instead of 10 mg every 8 weeks .
Depends on the doc

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Oh, just to clarify, here in Europe the standard dose is 5mg, regardless of the amount of weeks used. I know some clincis have used 10mg, but that is when 5mg doesn't work, and many prefer just to decrease the time between infusions, by one week, by 2 weeks if that doesn't work and then reevaluate. I know some use 10 weeks too after infliximab has been used for several months and people are in remission. I really don't know about how it works in the US, nor have I ever been there, I would be surprised if it differed from Europe though.

kiny said:

To this day, they still do not understand what infliximab does for crohn's disease.

Click to expand...

I believe the clue can be found here.

Be careful with zinc supplementation. In my opinion, it's one that should only be supplemented if you are shown to be deficient.

Thanks, so I think I need to ask more questions from the gi clinic. I will try to talk to the head nurse since she is really helpful with questions. The increase may be due to the vials and they needed to go up a vial to maintain being above a certain level since he has gained weight? I got the impression from the infusion clinic that the vial became yours, once it was opened and you might as well use it rather than toss it. Due to the increase in the vial, he was at 7.5? Does that make sense at all?

H has never been tested for antibodies or remicade levels in his system. Is that common as long as all is well? Are those test more common when there are problems?

Thanks again Kiny for putting things in easy to understand language. You would be an incredible instructor. Especially impressive, since I think I remember that english may not be your first language.

hmmmm still wondering then why my daughter's psoriasis is out of control even on 10mg/kg of Remicade every 6 weeks and 10 mg of Mtx per week! Sorry about this...just feeling really pissy about the darned psoriasis right now. Small potatoes compared to what most are dealing with but just goes to show that medicine really is just a practice not so much a science.

crohnsinct, did she develop the psoriasis before or after she began utilizing Remicade? I'm sorry if we have discussed this previously, I lose track

David said:

I believe the clue can be found here.

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that's a really good article thank you

dentritic cells are present in the small intestine in the peyer's patches, if they take up antigen in the form of bacteria but are unable to induce apoptosis, lowering their antigen presenting capacity would lower the amount of T cells that would home in on the gut

but that would still leave you with a chronic disease, my main gripe about infliximab, I am really in favor of using infliximab together with antibiotics, I have gotten infliximab with cipro once and it was extremely effective for me

What if the antigen was a heavy metal?

http://www.ncbi.nlm.nih.gov/pubmed/11851891

David said:

Be careful with zinc supplementation. In my opinion, it's one that should only be supplemented if you are shown to be deficient.

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David, my son was tested and was low and Dr suggested 15mg/day. His skin rashes cleared up shortly after supplementing. A year later he tested in normal range and doc said to continue at same level. I am going to request Mg testing next time. Is there a preferred test?

momoftwinboys said:

Thanks, so I think I need to ask more questions from the gi clinic. I will try to talk to the head nurse since she is really helpful with questions. The increase may be due to the vials and they needed to go up a vial to maintain being above a certain level since he has gained weight? I got the impression from the infusion clinic that the vial became yours, once it was opened and you might as well use it rather than toss it. Due to the increase in the vial, he was at 7.5? Does that make sense at all?

Click to expand...

It doesn't make complete sense.

5mg or 7.5mg is per Kilogram, the distinction is not related to the actual weight of the person. You don't increase 5 to 7.5 because the patient weighs more, you increase it because the current dose is ineffective (that is, they are still too sick)

When a patient comes into the hospital they should be weighed on a scale, at least that is the standard procedure. That weight is then multiplied by the mg used for the current treatment (5 or 7.5).

I don't know what happens with the vials once they are open and there is left over, they should be thrown out in some way. No vial should be completely emptied because "it's open anyway"...vials need to be given exactly on the dot per mg/kg. If you only need 10mg of that 100mg vial, you take out 10mg with a syringe, pull out 10mg on the line of the syringe (in ml per vial) and don't use the rest.

She had a small patch around both eyes but derms told us it was eczema. Prednisone made it go away. I asked if Remi would do the same and GI said not if it was eczema. Fast forward some months and the girl is getting stared at in public. Derm told us rebound effect of steroids. GI sends us to derm at Childrens Hospital, biopsy and sure enough psoriasis. So pre existing psoriasis made worse by Remicade. We added MTX and it made a bit of a difference...people don't stop, stare and move away anymore but still oozing, scaling and swollen eyes etc.

I was recently called in to the nurses office and told other students are complaining about her scaley skin on the desk. So it has been added to her 504 that she can be late to class because she has to Clorox wipe down her desk to make it presentable for the next student. Can't say I blame them but still tough for a high school girl.

momoftwinboys said:

David, my son was tested and was low and Dr suggested 15mg/day. His skin rashes cleared up shortly after supplementing. A year later he tested in normal range and doc said to continue at same level. I am going to request Mg testing next time. Is there a preferred test?

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Interesting. What kind of rashes were presenting that cleared up with zinc supplementation?

You're going to be very hard pressed to get a doctor to run any sort of Mg test other than serum magnesium. The problem with serum magnesium is it can be normal (because the body does everything it can to maintain serum levels so you don't die) yet your tissue and bone levels can be inadequate. However, it IS better than nothing and our wiki entry on Mg talks about a better reference range.

Frankly, magnesium is about the only vitamin or mineral I'm ok with people blindly supplementing (as long as their doctor is informed). It is SO HARD to get enough via the western diet, many people are deficient, and it is so critically important.

crohnsinct said:

So pre existing psoriasis made worse by Remicade. We added MTX and it made a bit of a difference...people don't stop, stare and move away anymore but still oozing, scaling and swollen eyes etc.

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Aww, the poor thing I was going to give you this article if you didn't know about the connection between anti-tnf and psoriasis.

momoftwins: at the beginning O was frequently tested for antibodies and Remi levels but that is because as we neared the end of the Remi cycle symptoms returned and the doc needed to know why. So if no Remi left (which was her situation), shorten cycle and increase dosage. However, in the states, insurance is now refusing to reimburse for these tests and asking ped GI's to adjust based on symptoms which to me is ridiculous because suppose they are assuming loss of response due to low levels and all along it is a building of antibodies....they are just leaving these kids untreated with possible inflammation which is ridiculous. But I digress.....so yes in the past our GI tested but not anymore. If he feels strongly that a test is the best for a patient he discusses it with the parents and asks if they are willing to pay. Apparently it is about $250.

David said:

What if the antigen was a heavy metal?

http://www.ncbi.nlm.nih.gov/pubmed/11851891

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A little more for you Kiny

http://www.biotechniques.com/Biotec...otein-visualization/biotechniques-302450.html

http://www.ncbi.nlm.nih.gov/pubmed/15767020

David said:

Interesting. What kind of rashes were presenting that cleared up with zinc supplementation?

Click to expand...

He had small rashes along the bottom side of his nose and corners of his lips.

momoftwinboys said:

He had small rashes along the bottom side of his nose and corners of his lips.

Click to expand...

Did the rash on the corner of his lips look like this?

They have stopped doing antibody tests for people here too unless of course they have a reaction. They say the cost it too high and they didn't get approvement for it anymore.

It's a shame because there is still this misconception that crohn's disease is manageable by waiting on the patient's response instead of being proactive and giving crohn's disease patients all the infrastructure and tests they need. Our GI had to fight and argue to get crohn's disease moved up on the MRI list and to give them full access to the newest echo machines (echo is finally showing benefit for crohn's disease thanks to the increased detail in the images, in ER this has been a lifesaver for docs here).

A lot of issues could have been avoided if people with crohn's disease weren't put on a waiting list, and treatment could also be lowered when they are actively followed and action is taken before harm is done, not after.

David said:

Did the rash on the corner of his lips look like this?

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It was over a year and a half ago. It could be like that, but I think I remember it being more red than like that pic.

Thanks David. She is doing remarkably well with the new request. She says at least now she is getting rid of everyone else's germs. Interesting that even though they know of the pre existing rash they are insisting it is Remicade induced as that is when it blew up and got super bad. She even has it in her privates. The upswing is her derm has nominated her for a skin disorders camp and if they accept her she goes away for a week for free! And her sister has Vitaligo (I know another auto immune disorder) and she has already been accepted! Empty house for a week! Free! Gotta celebrate small victories.

Sorry bout the hijack tess!

P.S. interestingly enough....O has gone off vegetarian eating and psoriasis got real bad. We are returning to vegan eating next week (her skin never looked better as when we were full on vegan)...right after our exchange student leaves and all the Halloween candy is finished.:eek2:

Oh my gosh momoftwins...us too! David and I had this conversation on another thread about b12.

The test is close to $2500 for the antibody test /remi levels - only Prometheus labs runs the test in CA.
So a little pricey out of pocket .

Remicade also caused a ton of skin issues for my son.

No worries about the hi-jack!! Very interesting discussion! I'm learning a lot!! :study:

Ok. I got more details. The vials do come in 100mg. My son started at 2 vials (200 mg) based on weight they round up so he started just shy of 6 mg/kg. he remained at 200 mg for a year but as his weight increased over the year his ratio gradually went down to 4.2 mg/kg. they upped the dose to 250mg so now he is just above 5.2mg/kg. they usually increase by 100's but will sometimes change by 50mg. He is doing well, however their method of dosing does not leave me feeling warm and fuzzy inside.

Does anyone know if this is standard procedure or not?

Thanks

Sounds about right to me. So the volume changed but not really the mg/kg....well it did but they changed to get close to the original dosing. It sounds like he is good as he is near the 5mg/kg amount which is the standard ped dose. He is doing well still? Depending on O's weight she bounces a little under and over the 10mg/kg amount.

Thanks CIC. He is doing well knock wood. I am GRATEFUL.
It just seems to be a rather large range on either side of the 5. Twenty percent over to start down to twenty percent below before getting back to target. I am ok with it if that is standard in the industry. Sometimes our clinic seems to be behind the curve. Not into EN. No Fecal inflammation tests. Just trying to see if they are in line with other places.

O is amazing in her attitude with the skin issues. She has been a trooper. Hope she gets some relief soon.

momoftwinboys - I don't know if your clinic is 'behind the curve'?? It seems to vary between GIs and clinics/infusion centres. Stephen's been to two well known, large GI clinics, both his GIs are apparently 'top notch' and both have fairly decent GI research facilities tied to them but... ped GI clinic were big on EN so really pushed it to be his first treatment, etc., transfer to adult GI (who was recommended by ped GI) and he says he doesn't think EN has done anything for him. Ped GI's hospital didn't do FC tests because of some 'authorization' issue, adult GI says it's not reliable. Here I read that GIs run bloodwork at most infusions, I ask Stephen's infusion centre what his schedule is and they say it varies - some every infusion, some every six months but Stephen's schedule is 'whenever the GI orders it' (not happy about this at all!!)... So, not saying you're wrong to be questioning but there seems to be a lot of 'room' and still be within 'standard'.

momoftwins: I have to admit, I was surprised to hear he fell low. Our infusion center weighs O every time we go and then they load the bag accordingly so she is always pretty close to her dosing. Do they not weigh him? Seems it would make a big difference as the kids heal, absorb more, grow and gain weight. The important thing is they caught it and they are back on track and most of all that he is doing well.

Thanks for your kind words about O. Her attitude really does amaze me. Which is also why I do not understand the whining and complaining about the itty bitty vit d or folic acid pills or the chewable multi...really?! After all you have been through you are giving me a hard time over this? Teens!

Crohnsinct - it could be the one area that our kids feel they can exert some 'control'. Even meds are only in their control to a certain extent (as we're constantly on top of them) but, with vitamins, maybe they feel they're not as important and it's their chance to 'rebel'??

They weigh him every time and we have discussed his weight gain at appts. I would think the vials could be used in doses other than 50 or 100, but perhaps it is an insurance billing thing. Who knows? Like all things crohns.... There are no hard and fast rules it seems.:ybatty:

WE had the same thing weight every visit and the adjust the bag to get to the doc ordered dosage.

just to use a vial is not standard from what I have seen.
doses are very clear
5
7.5
and 10

I think I was asking about this awhile back. I know C is at the highest dose but that would've required "x and almost 1/2 vials" due to weight. So the doc gave only the x amount and not the half. I think since that time he has moved to the whole x and 1/2 vial due to weight gain.

I guess 100mg vials since I found this:

Calculate the dose and the number of REMICADE® vials needed. Each REMICADE® vial contains 100 mg of infliximab. Calculate the total volume of reconstituted REMICADE® solution required.

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