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Stephen... Remicade now...

Tesscorm

Tesscorm

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Staff member
Starting a new thread on Stephen's experiences with Remicade (hopefully, they'll all be good!!!)

So far, he's had two infusions and all has gone well. No reactions during infusion and no side effects afterwards.... I think... he seems to look a bit pale immediately after the infusion and it seems he's complained of being a bit more tired lately but not sure if it's related to the remicade or if it's that he's started working full time (plus 1 hr commute) but is only just beginning to adjust his 'teen' late night hours. (Think he's beginning to get why us 'old folks' go to bed early! :lol:)

But, all in all, all seems to be going well.

Can someone help me with a couple of questions? :ytongue:

Are allergic reactions related to the build-up of antibodies? If he begins to build antibodies, does this make him more likely to have a reaction during infusion (or at any time)?

And, how will we know if he's building antibodies? Is this tested regularly in bloodwork done at every infusion or is it only the Prometheus test that shows antibodies.

If you develop antibodies, is it possible that you have no signs of having built antibodies but the remicade just won't work???

Thanks! :rosette2:
 
my little penguin

my little penguin

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Takes a while to build antibodies typically a few infusions.
Prometheus test Haca is the only place to get them measured.
Having antibodies increases the likelyhood of a reaction and the drug losing effectiveness.
You can have a reaction up to two weeks after an infusion
Acute reactions occur within twenty-four hours.
You can still have a reaction without antibodies .
DS does not have antibodies ( we tested before last infusion)
But he still had a reaction.
 
Clash

Clash

MLP or one of the others, will have to answer about the allergic reaction part because I'm not certain but we just went through the antibodies testing.

It is a blood test that tests for antibodies but it has to be sent off and usually takes a week and a half to get back. In our situation, we only tested for antibodies when C was having the joint pain so soon after a remicade infusion. I don't imagine many CD'ers have the antibodies tested for on a regular basis since it is a fairly expensive test and alot of ins companies don't cover it in the US. But it could be different in Canada with your healthcare system.
 
Tesscorm

Tesscorm

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So you could have antibodies and remicade could be losing effectiveness but NOT have a reaction. In this case, as Stephen has few external symptoms and his recent bloodwork was completely within normal ranges (except slightly low HGB) even with the inflammation present, would an MRE be the only way to test effectiveness?

MLP, I've never seen it mentioned here but, just in case... :eek: The analyphylactic reaction can only happen during (or immediately following) infusion, right?

Clash, same here re the test - very expensive. Not sure if our insurance would cover it but I know my friend has had to pay a couple of times to have her daughter tested.
 
Tesscorm

Tesscorm

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FW - yes, Stephen's fine with it. Said it's actually relaxing, goes in, watches a movie, etc. He got home from Tuesday's (2nd) infusion at 6:30pm, was starving, ate and went out to a pub/wing restaurant to watch a game on the big screen. Seemed totally fine.

He was a bit annoyed that because of the time he has to take off from work for the 3 loading doses and follow up apptmt, he couldn't take tomorrow off for a 'long' weekend away but, that's life... Told him crohns or not, we all have to deal with inconveniences and sacrifices sometimes... :emot-nyd: I don't like to discount or play down his issues but things could be a lot worse!

But, now MLP has me worrying... You can have a reaction up to two weeks after an infusion ...he's going to be away with friends this weekend! :yfaint:
 
my little penguin

my little penguin

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Tess
The infusion clinic should have given him papers stating what to watch for during the two week period .
I think the most serious reactions tend to occur within two hours but can occur within twenty four delayed reactions tend to be less serious can occur up to two weeks later some may or may not need treated.
Please find his list or call the infusion center for what to watch for and when to call
 
Tesscorm

Tesscorm

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Staff member
Thanks MLP... will ask him if he received a list. The pharmacist called me yesterday with lots of info but only mentioned that he might have flu-like symptoms, fatigue, itchiness, rash following the infusion but they should go away within a day, and that as he's had two infusions with no reactions, he's less likely to have them. She only mentioned that any fever or 'coloured' mucous/phlegm warrants a call to the doctor.

If Stephen doesn't have the list, I'll give the pharmacist or infusion centre a call...
 
Clash

Clash

Tesscorm, you started a thread a while back that I posted the reaction sheet we received from the IV lab. You might go back and look at it to see the reactions per time frame.

C's GI said the most concerning time for serious reaction is during the infusion and then the 24 hour period afterward.

Some of the reactions listed on that sheet I posted play into the building of antibodies or burning through Remi too fast. For instance if you start to get joint pain 2 weeks after the infusion they want you to report because it may be that he is burning through the remicade too fast or is developing antibodies and not so much a "reaction" to the remicade.
 
Tesscorm

Tesscorm

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That's right! Sorry, Clash... forgot about that! :facepalm: I actually showed it to Stephen and hubby at the time and now completely forgot you'd posted all that info! :ybatty: Too much wine :lol: (or maybe not enough! :eek:)
 
kimmidwife

kimmidwife

Tess,
Caitlyn's antibodies were negative and she then had an anaphylactic reaction at the second dose. I guess that means antibodies don't reflect possible allergic reactions. We only tested antibodies because she was on remicade and then stopped it and we restarted it a year later.
 
Tesscorm

Tesscorm

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Staff member
Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:

Why am I not surprised!?!?! :angry-banghead:

:)
 
Johnnysmom

Johnnysmom

Tesscorm said:
Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:

Why am I not surprised!?!?! :angry-banghead:

:)
Click to expand...
Well that seems about right Tess!!! Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?:ybatty:
 
Tesscorm

Tesscorm

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Staff member
Johnnysmom said:
Well that seems about right Tess!!! Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?:ybatty:
Click to expand...
Because we're the only ones who will still try to make any sense of it! :study: :study: :study:

:ylol2:
 
Dexky

Dexky

To save time...Ask Dusty!
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Tesscorm said:
Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:

Why am I not surprised!?!?! :angry-banghead:

:)
Click to expand...
That may be the most brilliant quote I've ever read about IBD!!
 
LISATHEGIRLS

LISATHEGIRLS

My husband is starting Remicade this afternoon. Been in the hospital for 7 days on iv steroids and isn't responding. This is his first flare up that has landed him in the hospital. Diagnosed 15 years ago and has only had 3 mild flares that would be put in remission with oral prednisone...
Doc wants to start the Remicade already. Does this seem premature? Seems alot of Crohns sufferers endure much more before starting such an extreme treatment option. Any feed back would be appreciated!!
THANK YOU!
 
Tesscorm

Tesscorm

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LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.

My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement. However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery. To avoid that, he strongly recommended remicade.

While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there is enough info to make it a reliable option??? Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.

Is your husband's GI concerned about inflammation? Have you discussed other medication options with the GI and his reasons for choosing remicade?

Please also look under the Treatment subforum, there are sections there on all med options.

Good luck! :ghug:
 
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LISATHEGIRLS

LISATHEGIRLS

Tesscorm said:
LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.

My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement. However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery. To avoid that, he strongly recommended remicade.

While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there isn't enough info to make it a reliable option??? Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.

Is your husband's GI concerned about inflammation? Have you discussed other medication options with the GI and his reasons for choosing remicade?

Please also look under the Treatment subforum, there are sections there on all med options.

Good luck! :ghug:
Click to expand...
Thanks for the info. Yes, has a great deal of inflammation in both the upper and lower intestines. With this being his first major flare we really didn't know how to handle it. Since we waited so long for him to get checked out his cat scan showed a good amount of inflammation. He had a colonoscopy two and half weeks prior to his hospitalization and his colon was pretty bad then so the started the oral prednisone. He travelled for work, we went on our family vacation, he was miserable and we kept hoping the oral prednisone would work as it did in the past. Not realizing the damage we were doing putting off going in to see the doc. He had a decent day yesterday with little pain, but then passed some clots after dinner. The clots turned into bright red blood with severe pain. Amazed how he seemed to be going in the right direction and then WHAMO back to square one.
Anyhoo, they transferred him from a med surg floor to oncology and did his first infusion this afternoon. Hoping for the best.
Has your son started on the Remicade yet? Or are you still researching other options?
Thank You!!!
Lisa
 
Tesscorm

Tesscorm

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Staff member
My son has had two infusions. I did as much research as I possibly could! :ywow: But his GI very much recommended remicade and my son, now 18, was concerned at the possibility of surgery and wanted to go on remicade to minimize that risk. At 18, I have to respect his decision; I couldn't take on the responsibility of convincing him not to and then have him face surgery. Although, as I said above, there are side effects/risks with any of the immunosuppressants (remicade, humira, 6MP, Imuran, Azathioprine, methotrexate, etc.) so it just made sense to go with the one the GI was most comfortable with.

I would very much have preferred the opportunity to try Low Dose Naltrexone. There are quite a few people here who have had success with it and it has minimal side effects but our GI did not believe there was enough data to back it up and wouldn't prescribe it. There's quite a bit of info on LDN in the treatment section.

But, keep in mind that if your husband has quite a bit of inflammation that even pred was unable to control, LDN may not be enough to get it under control and you would be risking further damage. :( These are always tough choices! :ghug:
 
Tesscorm

Tesscorm

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Staff member
Another question re remicade :redface:

Is there a test that tests for therapeutic levels of remicade? Infusions at 8 week intervals and 5 ml(?)/kg seems to be the standard dose but how do they know this is accurate for everyone? I assume trials/time have shown this is dosage and schedule that works for 'most' people but there are lots who have had their dosages increased and/or schedules tightened. I think, for the most part, a change in dosage seems to simply be a response to the presence of symptoms.

But, is there no standard blood test to measure levels of remicade in your system? Or can this also only be tested by Prometheus tests?

:)
 
kimmidwife

kimmidwife

I think there is such a test although I dont know how frequently it is used. I am pretty sure the first time Caitlyn was on remicade she had it checked when it wasnt working for her.
 
Clash

Clash

Tesscorm yes the serum levels test is part of the Prometheus tests usually along with HACA levels, they generally don't test levels unless symptoms are present but since Stephen was feeling good to begin with you might request the levels test. You would do it ahead of time so as to test at the right time after infusion, like right before next infusion or there about.
 
Tesscorm

Tesscorm

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Thanks Kim, Clash. I guess, if it's a prometheus test, it's not tested on a regular basis... and there's a (likely) chance it's not covered by our insurance??? I imagine the GI will know if it's generally covered by insurance... will ask at our next apptmt.

Good luck at your apptmt today, Clash! :thumright:
 
LISATHEGIRLS

LISATHEGIRLS

Thanks to all for the info!! Hubby update...
First dose of remicade while still admitted in hospital on Friday, discharged last Tuesday 3 days after infusion. Showed no response to the drug, however, came down with a terrible cough (yellow mucous) and then a fever by Thursday at home. By Friday evening we headed back to the er. Seems he picked up bacterial pnuemonia. On doxycycline for 10 days. Guessing that will delay his next scheduled infusion this Friday. On top of the pnuemonia, also low sodium/dehydrated and hemoglobin is 10. He is miserable! I hope this isn't what we have to look forward to!
 
Tesscorm

Tesscorm

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Had Stephen's follow-up appointment today... first one since starting remicade.

So, ALL IS GOOD! :D CRP is the lowest it's ever been at 0.3 (before starting remicade it was 6.5).

As far as follow-up, he said he would like to rescope in a few months but we'll see how Stephen's doing, how his school schedule looks and then decide when the scope can be scheduled. In the meantime, as his labs don't show alot (although CRP did drop...), he will be doing another MRE in August before Stephen leaves for university.

He also wants to test for remicade levels and antibodies a day or two before his next infusion.

I didn't end up asking about the fecal calprotectin or the INR as he pretty much covered everything with the scope, MRE and prometheus test!

A bit of a surprise... I told him I was going to start reducing the amount of EN that Stephen ingests so that he is done with Tolerex by June/July and, in place of the Tolerex, he would drink a couple of Boost shakes daily (not the equivalent but just a nutritional 'boost'). When Stephen first transferred to this GI, he was fairly dismissive of the EN and said that the only benefit he was getting from it was nutrition (no healing, etc.). Surprisingly, today, he said he didn't see reason to reduce it yet, while he's sure the CRP improvement is due to the remicade, the EN could be helping it along so it could only 'help' if he does keep the EN until he leaves for university (or as close to him leaving as possible)! :yrolleyes: He assumed Stephen was tired of the tube so suggested Modulen but the tube isn't the issue at all, I was actually reducing it for almost the same reason he wants to keep it going... I didn't want to take Stephen off it just before he leaves only to find out, once he's away at school, that the EN was having more of an impact than we realized. He wasn't absolutely adamant about keeping the same dosage, just thought it would be a good idea. So, we'll keep it for now...:)

I had also wanted to take Stephen off nexium (he's been on it since May 2011)... he takes one nexium every night when he uses the NG tube (5 nights/wk). Stephen has no problem with heartburn on the weekend (when he doesn't use the tube) but finds that he does have heartburn if he uses the tube but doesn't take nexium. (The flap between esophagus and stomach stays open a bit and allows acid to escape.) For now, I guess we'll continue with the nexium. The scope did show a little of redness at this area of the stomach, GI said it probably isn't bad enough to be causing heartburn, etc. and thinks it may be irritation from the tube... but thought it was okay to continue as is for now.

Next follow up will be after the MRE and before Stephen leaves for school. :thumright:
 
CarolinAlaska

CarolinAlaska

Holding It Together
Glad to hear the Remicade is helping so much and that Stephen will be at a good place when he is ready to go to school in the fall.
 
Tesscorm

Tesscorm

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At most, only a 2-3 hour drive. Our hope is that we can stay with the same GI and infusion centre. We briefly discussed what Stephen should do if he experiences any symptoms and GI was only concerned if he develops an infection/fever and said, if he can't get to the GI or regular GP, Stephen should not wait and should go to a doctor or ER to have it taken looked at.

Just for anyone's interest, we also discussed being immunosuppressed, etc. GI said that yes, being immunosuppressed does put you at greater risk for infections/complications and that it is important to check but it does not necessarily make you more susceptible to catching something. So, you're not likely to catch more colds, flus, etc. but you must be careful if you DO catch something. A bit more than basic hygiene is a good idea (wash hands more frequently, cover up cuts, etc.) but that, with all the clinic's patients, he sees only one or two infections that need any treatment in a year.

Of course TODAY, Stephen tells me that he's had a cough that won't go away! :facepalm: It's tough when they're this age because often you don't see them for long periods (ie home for a quick dinner and gone till late)... but he's saying he has no other cold symptoms, just the cough. But, since a little boy, he's always tended to have a cough or needed to clear his throat (I've read about a crohn's cough??), so (even with all the talk above about vigilance :yfaint:) I think I'm going to wait a few days... but, wish he'd mentioned this YESTERDAY.
 
my little penguin

my little penguin

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We were told the same and so far almost two years later it holds to be true.
WE do use prescription strength " cut scrapes "creme.
As far as infection - anything above a cold we call GI right away just to keep in the loop.
 
Tesscorm

Tesscorm

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Staff member
my little penguin said:
As far as infection - anything above a cold we call GI right away just to keep in the loop.
Click to expand...
Yes, that how it seemed with Stephen's GI. Sort of surprised me because he seems to be a laid back, relaxed guy so wasn't expecting him to be so firm on infections/fevers. But, glad he was... made Stephen realize it's not just 'a mom thing'! :yrolleyes:
 
DustyKat

DustyKat

Super Moderator
It so good to hear all is going well Tess. :):):):):):) Long may it continue! :mademyday:

I don't wish to cause you anxiety, :wink:, but when will Stephen leave for uni?

Dusty. :heart:
 
Tesscorm

Tesscorm

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Staff member
Assuming he receives an offer from his first choice (the only one he hasn't received an offer from yet!), he will be leaving at the end of August. :cry: If not, it's still a bit up in the air, may go to another city (less than two hours away) or may even stay in Toronto???

Honestly, my biggest worry is 'what will he eat?' At home, at least we can control those meals, otherwise it's... 'I'll have the triple pork poutine with extra cheese and bacon! Throw some wings on the side but please don't put the parsley on the plate - have to watch veggies, etc., I have crohns!' :yfaint:

Otherwise, I am excited for him and he is soooooo ready to move on! :thumright:
 
DustyKat

DustyKat

Super Moderator
:lol: Tess!

Oh boy, I so know the gauntlet of emotions when they leave the nest! Love, fear, sadness, excitement, pride, you name it I felt it! :lol: And that was only Sarah...Matt is still here! :yfaint:

Dusty. xxx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
My oldest starts uni this fall too Tess. She will be staying in town but when asked if she wouldn't rather commute, she politely declined!! I remember feeling that way…I remember a lot…I think I'm gonna hire a PI to trail her!!!
 
Tesscorm

Tesscorm

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Staff member
:lol: It's definitely as big a step for us parents as it is for the kids! :eek2: But, as you said, Dusty, along with the worry, sadness, etc. there are so many good emotions too... pride, excitement, etc.

Dex, it's the daughters who will be the death of us! My daughter had zero interest in going out of town but now I am constantly worried as she has night classes downtown, goes clubbing with friends, comes home at 2:30am, etc., etc.... living in denial (of course she's home by 11 each night!) would be bliss!! :ylol:
 
DustyKat

DustyKat

Super Moderator
Ah yes Tess! The bliss of what you don't know doesn't hurt you. That is so me with Sarah. Worry, worry, worry about Sarah from the time the car leaves Sydney and arrives back again, then...out of sight out of mind...well not quite but you know what I mean! :lol:

Matt...well Matt is still under our roof but hibernates in his cave. My only worry with him is that he stays up at the uni library till all hours of the evening! :yfaint:

Dusty. :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Yeah, I don't know Tess! I think I'd rather she live on campus than stay home and do as she pleases. At least I can pretend she's behaving if I don't know first hand:)

She'll hold her own with the rednecks Dusty! While the other girls wear their short skirts and Toms to school, she's been wearing cowboy boots and bluejeans with a giant rhinestone belt buckle for years:)
 
C

crohnsinct

Well-known member
SSSHHH! Nobody wake Dusty. She is dreaming....Matt is in the library till the wee hours :rof::rof::rof:

Dex: cowboy boots, blue jeans and a rhinestone belt is hot! All those city boys are going to that school hoping to meet a girl like that! :eek2:

My girl goes to school 40 minutes from home. She stays on campus. She stays in most nights. When I call her and she is home I am the one asking wth for? Why aren't you out? That apple fell far from the tree. Another orchard even. Now O is another story.
 
kimmidwife

kimmidwife

Tess,
I know how you feel about them leaving the nest. My oldest is planning to join the military this fall. I am excited for him and worried as well. It will be hard to let go but I know it will be good for him. It is tough to let them fly the nest!
 
Tesscorm

Tesscorm

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Staff member
Absolutely, Kim, along with the worry, pride, etc., I think there's just plain sadness that they're moving one step further away from being your baby :cry:... and taking one big step towards adulthood and independence! My kids are close in age (13 months); great in many aspects but not in others... high school, driver's licences, university, independence... uggh, I barely adjust to the first reaching that milesone, when the other hits me!

But, just to not start all the parents here with little children worrying about the future... ;), there's no greater pride than seeing your baby become a wonderful adult! :thumright:


Dusty - there most certainly is some truth in
out of sight out of mind...
Click to expand...
... when Em stays at a friend's residence downtown, I barely worry ... cuz, of course, they spend Saturday nights watching a movie and ordering in a pizza! ;)

Dex - sorry, I'm with CIC... jeans and cowboy boots... She'll have those northern city boys drooling! :D
 
A

araceli

I am so lucky (I think) She wants me to move with her when she goes to college. So we are moving. I am not selling my home just in case she kicks us out.
 
Clash

Clash

Tess, Dusty I am the same as you two with my daughter. I worry from the time she leaves here and heads to her apt but once she is there all is well.

The Hubby follows her on twitter so I get these little snippets of her college life and since the Vine app has become popular all I can say is she is definitely trying to prove out the "All work and no play...." theory!!:yfaint:
 
Tesscorm

Tesscorm

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Staff member
I need some help, some info... I found a voicemail today from the infusion centre saying that they 'received a new directive that Stephen's remicade is now to be at 6 weeks and to call to reschedule'! Stephen had the prometheus test done on June 5 (morning of his last infusion), I am assuming that the test showed lower than acceptable levels of remicade??? I assume if it showed antibodies, he would be adding mtx or premedicating with a steroid rather than increasing the frequency, right?

Don't want to do this without speaking with the GI. Am I wrong to expect a discussion before just changing the schedule? At the very least, I'm want to wait to see what the MRE shows on Aug. 2 (his next 8 week infusion is July 31).

Before starting remicade, Stephen's CRP was 6.5, the results from the blood taken at the 3rd infusion showed CRP was down to 0.3. But, unfortunately, I don't have the results from subsequent tests (yet - am requesting them tomorrow).

Any thoughts? What do I need to ask the GI?

But, what I'm wondering right now is...

Is there a minimum level that must be reached for remicade to work? And, is it possible for this number to vary amoungst people? ie totally different, I realize, but my 'normal' blood pressure is 100/70, the typical is 120/80 but the 100/70 is 'normal' for me, is it possible that some people can have a lower therapeutic level of remicade and it still works? What I'm getting at is that Stephen is scheduled for an MRE in a month, wouldn't it make sense to see if his inflammation has diminished before increasing the remicade and then, based on MRE results, make adjustments accordingly? I realize that sometimes we can't rely on blood results to determine treatment (hence MREs, scopes, biopsies) but can't you rely on MREs to determine if treatment needs to be adjusted (especially if blood work matches improvement in MRE)?

I just hate this... was totally NOT expecting this phone call! :eek:
 
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my little penguin

my little penguin

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Staff member
To decrease antibody or reaction risk
You increase frequency and/or add Mtx/6-mp.
Steriods or premedicating only reduces the effect of a reaction
It does nothing to stop or prevent antibodies.

Sorry the doc didn't explain but I would schedule and call to discuss in the mean time.
There really isn't that much difference between 8 and. 6 weeks.
Many kids go back and forth while tweaking either for symptoms or blood work.
 
kimmidwife

kimmidwife

Tess,
Don't freak over this like MLP said it is not that uncommon to switch between six and eight weeks. We went through that several times when Caitlyn was on remicade. Have you heard from him? How is he doing in The D.R.?
 
Tesscorm

Tesscorm

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Staff member
If it's to decrease antibody/reaction risk, something must have shown up in the test, right? Because, otherwise, why randomly change it now? Why not have started at 6 weeks? Does that make sense? If 'something' did show up in the test, what would it be? Would it be a level of ATIs that indicates the presence of antibodies? ie a number above a certain level means that antibodies are developing?
 
kimmidwife

kimmidwife

I would think it more likely that his remicade levels were not as high as they should be because maybe he is one of those people that is a fast eliminator of medications.
 
Tesscorm

Tesscorm

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Staff member
Kimmidwife,

Yeah, I guess the message totally through me for a loop and I DON'T like that he didn't even discuss it with me first!

Re Dominican, I haven't spoken with him directly but he texted on Monday and left a voice message yesterday... so far, all is good! :)
 
C

crohnsinct

Well-known member
I totally hear ya on the change without an explanation but .. Your son is over 18 and in the docs eyes he doesn't owe you an explanation (translation you are old...haha join the club).

I am thinking lower than acceptable levels of Remicade also. Weird though because his inflammation markers are responding. O's markers remained elevated and her doc didn't jump from 8 to 6. We went down one week at a time and also increased dosage each time.

Yeah, I am not a fan of this GI's communications skills but hey, maybe he called Stephen to discuss and Stephen forgot to tell you.

This is why when O ages out of the ped practice I am transferring her care and claiming she is 3 years younger....what?! They don't check birth certificates!
 
Tesscorm

Tesscorm

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Staff member
Kimmidwife,

Re the levels... so the level of remicade would be shown on the prometheus results, right? And if not at an acceptable level, would be below a stated range? right?
 
Tesscorm

Tesscorm

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Staff member
CIC - yep but Stephen has already signed off that all medical goes through me! :lol: You didn't think I was leaving that loophole open!!!
 
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Tesscorm

Tesscorm

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Staff member
MLP - so you think I should schedule the six week apptmt? Or he may run the risk of developing antibodies? :(
 
my little penguin

my little penguin

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Maybe his crp or sed rate was up.
His levels may not have been as high
I would ask the Gi .
We never got to 8 weeks with DS since he burned through it so fast.
His was because his body was attacking the remicade in the form of an allergy- at least according to the Gi-allergist but he did not have antibodies present on the blood test.
 
my little penguin

my little penguin

Moderator
Staff member
I would schedule the six week appt because for whatever reason his Gi wants him at 6 weeks at this point.
I would aslo follow up with the Gi and or nurse to find out the why is there a change . Plus get copies of all the recent test results.
It is typical ever DS got his infusions to go from 8 to 6 weeks then back up again usually for blood markers but it varied by Gi .
 
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crohnsinct

Well-known member
O.K. you didn't ask me but I will answer. Yes, go ahead and schedule for 6 weeks. No, you wouldn't risk building antibodies, it takes a much longer break for that. However, bottom line though is the GI had his reasons for wanting to move it and there is little chance you are going to disagree with them once you hear them.

Loving the loophole closing! You could teach classes. I could fill my semester with Aussie Slang 101 followed by Loophole Closing 101 and an elective of Southern Charm with professor Clash! Maybe I could earn my tuition by teacher Wineology 101?
 
Tesscorm

Tesscorm

Moderator
Staff member
GI with a control freak mom to a quasi adult.... bit patchy! :ybatty:
 
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Clash

Clash

Wow...just caught up! Although I would be highly upset if GI informed the lab of the change without a discussion with you I agree with the others that it may have been a result of low levels or possibly a change in inflammation markers. I'd defo call the GI and get the low down but would go ahead and schedule the 6 weeks, you can change it if there seems no legitimate reason for it to be at 6 weeks.

I'll teach southern charm if Sascot will throw in a Scottish brogue 101, love me some Scotland! I'll be signing up for the other classes too...ladies we will not only be IBD experts but remarkably well rounded ones at that! Oh yeah!
 
Tesscorm

Tesscorm

Moderator
Staff member
OMG, I'm currently taking a crash course in HACA, pANCA, ASCA, ATIs, IgA, IgG, ELISA, ACCENT I, ACCENT II... :runaway: Anyone care to join me?!? :tongue:
 
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crohnsinct

Well-known member
Clash said:
I agree with the others that it may have been a result of low levels or possibly a change in inflammation markers. I'd defo call the GI and get the low down but would go ahead and schedule the 6 weeks, you can change it if there seems no legitimate reason for it to be at 6 weeks.

QUOTE]

Haha thanks for agreeing but perhaps you missed it...she was really only asking MLP...understandably so but the least she could have done was pretended she thought we all had an opinion worth hearing.:tongue:
Click to expand...
 
Tesscorm

Tesscorm

Moderator
Staff member
:rof: :rof: OMG, I seriously don't know what I would do without ALL of you!!!! I was seriously panicking when I first posted (do you guys sense my all out panic at times? :redface:) I can't believe I'm actually breathing and laughing now! And, it's because of ALL of you! :Karl:

(Good thing I held off on hitting 'send' on my first email draft to the GI... the one I did send, after hearing ALL of your comments, was much more civil! :))

So, buzz off CIC!:kiss:
 
Clash

Clash

Haha CIC, well....it is Prof. MLP and deservedly so!

Tesscorm, I know you all can read the panic in my posts as well!

Keep us updated!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I think MLP's posts should be in red so I could pick it out w/o having to read all the other nonsense!...like this:) I don't know anything about Remi but your "panic" does remind me of mine when our GI wanted to go to weekly Humira and when he wanted to add MTX. I'm sure there's a good reason but if GI can't give you one, I don't see the harm in waiting 'til the MRE. Now ignore this and do whatever MLP says!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Spoke with nurse and she apologized that the infusion centre was so quick in calling that she hadn't reached me before they did. Prometheus test shows zero remicade levels at 8 weeks so, as you all above already knew and explained :worthy:, GI wants to keep remicade at a certain level in his system (My earlier question about whether there are varying acceptable levels for different people is obviously irrelevant given that Stephen's level isn't 'low', but at zero). So far, no antibodies.

Other results are all good... CRP now 0.2, ESR 5, HGB is increasing - so it is working! but, I guess, leaving him with no remicade in his system for one or two weeks leaves him vulnerable to the development of antibodies.

Now that I've slept on it and received some info, seems I made a mountain out of a molehill. :redface: Thanks guys!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Only GOOD news... :sun:

My baby's turning 19 today :eek:, spoke with him last night and all is well in Dominican and he'll be home tomorrow night! Can't wait to see him! :D
 
Tesscorm

Tesscorm

Moderator
Staff member
Are you fair dinkum?!? Rather than cleaning, I imagine there'd be a wee bit of gardening going on... Roots and all!! :eek:
 
DustyKat

DustyKat

Super Moderator
LMFAO! I think that deserves a High Distinction in Aussie Slang 101! :medal1:


Your boy has a tongue doesn't he?
 
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crohnsinct

Well-known member
Oh Man! First C's thread and now this one?! Have you ladies no shame?! Looks like I will be praying for your souls next week!
 
Tesscorm

Tesscorm

Moderator
Staff member
Ah well, I guess a vacation's not a vacation without a hospital visit! :eek: Stephen dislocated his shoulder yesterday. Says he slipped in the shower... ummm, yeah, right. :lol:) He said they took x-rays, gave him anesthesia and simply popped it back in.. simple! :eek: Anyway, he did sound fine, says he's not in pain and hasn't taken any painkillers except tylenol and that he asked for copies of everything from the hospital (that's my boy!). He'll be home late tonight, I'll see how he really feels then.

Relieved if something had to happen, it wasn't more serious than this! Hopefully, he's learned that he is not invincible and was able to learn it without much lasting damage! First physio already booked for Tuesday.

I don't think remicade/immune-suppression has any impact in healing? Am I correct in thinking this? But, guess I should send GI another email as I imagine this could affect his crp/esr numbers???

:)
 
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crohnsinct

Well-known member
YEs on inflammation numbers and dang! They say Remicade can affect bones and increase risk of breakage so I would say dislocation is lucky. Could have broken something. Was the girl o.k.?:tongue:
 
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