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12-11-2013, 01:52 PM   #1
Clash
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C winter update-frustrated

Just left GI, C is getting infusion. Things have been going reall well. 3-4 days ago bms picked up a bit complained of some fatigue.

So I can tell C is gaining height, you can see it on him. Sure enough another 1/8 inch, if this stays on par then he would have a normal height growth for the year.

Now the bummer he weighs 111.5 down from 116.5. 3 months ago and 117 six weeks ago.

C didn't want a 5.5 week Remicade so we are going up on Remi, it is higher than the standard dose of 10 whatever so we had to get ins approval, they agreed so moving forward.

CD freaking sucks!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 12-11-2013 at 03:16 PM.
12-11-2013, 02:23 PM   #2
Jmrogers4
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Hopefully once height levels out weight will be put on. Maybe energy going towards height growth and once that slows will go towards weight. It does stress you out though huh?
Hope the extra Remi is the kick to keep things under control and the fatigue and extra bm's are just a little bump.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-11-2013, 02:25 PM   #3
Tesscorm
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Ugghh!!! I hope the weight loss isn't really indicative of any crohns-related issue (one can wish! ) Stephen's weight does fluctuate a bit; as it generally goes back up a few weeks later, I haven't worried too much about it. Has he had his weight drop and then bounce back again before (without any crohn's related problems)?
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-11-2013, 03:00 PM   #4
Clash
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I think the issues the last 3 or 4 days is just that the Remi runs out right before the next infusion.

The weight I'm not sure about I mean, his does fluctuate but generally not souch.
12-11-2013, 03:02 PM   #5
crohnsinct
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CD freaking sucks!
You can say again! I especially hate how batty it can make us over every little thing.

Ugh! That is quite a weight drop and with height gain the way our GI puts it it is even more because with height they should be gaining...(sorry to be a bummer)...BUT O's doc says CD likes to attack vertical growth first and harder than weight and with some growth going on I would think that is the one positive take away here that you can hold on to.

I hope the compromise with increase in Remi dosing straightens all these symptoms out fast!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
12-11-2013, 03:49 PM   #6
kimmidwife
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It is definitely a good sign that he grew in inches. Maybe he needs to add some extra calories since growing does use more energy. Does he drink any kind of shakes or anything? Maybe he would be willing to add one a day if he isn't already.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-11-2013, 03:55 PM   #7
Farmwife
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Ya for the height.
My son always loses a bit when he has a growth spurt.
The in a few weeks he puts it back on plus a few pounds more.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-12-2013, 08:12 AM   #8
Clash
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It amazes me how much difference the Remicade makes and how quickly. By the time we got home he was singing its praises.

I do feel the weight loss is related to the cd but not to the downturn of the 3 or 4 days before Remi. I mean this kid eats all the time. I think he isn't in full remission(hence the issues right before next infusion) and that there is possibly scarring that is affecting absorption.

We are supposed to try to get him back on the shakes, he goes on and off because he hates them, they make him gag. We have GI appt in 6 weeks to discuss next step.

My appointment with the cardiologist is today.
12-12-2013, 08:27 AM   #9
Mehita
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We're going in for Remi #3 tomorrow... or Magic Mickey Medicine as its called around here.

Good luck today!!
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- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-12-2013, 08:35 AM   #10
Clash
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I hope his infusion goes well! C started 3 days before the infusion saying man I wish my infusion was today!

I'm going to ask for a fecal calprotectin right before his next infusion. They did blood work this infusion since C had complaints(he had scheduled blood work last infusion) but doc wanted to check vitamin levels as well yesterday.
12-12-2013, 05:29 PM   #11
Clash
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I haven't heard from the nurse about C's lab results but I felt like it would be tomorrow anyway.

So it was quite the excitement at the cardiologist today. They got me on the table took my blood pressure and it was low, then my hr started up and I thought I was going to pass out a couple of times. (I thought it was nice of my body to have the episode so the doctor could see it first hand!)

They did and echocardiogram and the doc said my heart looked good and strong. She feels like I may have some form of POTS so I am going tomorrow for a tilt table test.

I'm on metoprolol 12.5mg, I originally took the 25mg and my blood pressure dropped to0 low. The Cardio said that might be the case with the 12.5 as well and if I do have POTS then it might be a challenge we face in trying to find a med at a strong enough level to lower hr without so affecting blood pressure. Of course, all of this is premature since I haven't had the tilt table test yet.

Oh and since I refuse to pass out when these issues start the tilt table test is considered experimental(you have to have passed out 3 times for it to be deemed not experimental) the doc is having to write a letter to try and get it covered. So tomorrow I will self pay, 605.50 dollars. Whooohooo!
12-12-2013, 05:38 PM   #12
Jmrogers4
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Merry Christmas to you. Not what you wanted to spend Christmas money on. Hope it gives you answers and a good treatment plan though.
12-12-2013, 07:35 PM   #13
Mehita
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"All I want for Christmas is a tilt table, a tilt table, a tilt table..." sung to the tune of All I Want for Christmas is My Two Front Teeth.
12-12-2013, 10:17 PM   #14
Clash
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Okay I have a question for those in the know about mast cell activiation, I'm trying to read about POTS and apparently there are different types or characterizations which can affect treatment, ummm I'm already taking a beta blocker so...

MCA should be considered in patients with POTS presenting with flushing. These patients often present with a typical hyperadrenergic response, but β-blockers should be used with great caution, if at all, and treatment directed against mast cell mediators may be required.
I'm assuming the tilt table test isn't going to tell me if I have MCA but if one of the knowledgeables like my little penguin or Dusty or anyone else versed in this could give me a run down of the general symptoms of MCA that would be great. I'm only concerned because if this is POTS, I do have flushing with it.

I looked up the symptoms of MCA:

mild pruritus, anaphylaxis and life-threatening hypotension, tachycardia or unexplained arrhythmias, and neurologic or psychiatric symptoms
I've never had anaphylaxis and though I have had low blood pressure(due to the metotoprolol) I haven't had life threatening, I have had problems with anxiety, there is flushing with my tachycardia and of course I have GI issues and my back itches all the time but there aren't bumps or anything. The only other thing is though I had allergies as a child, I always had cats and was never allergic to them but now I can't get near my cats without, mucus build-up, itchy eyes, thickness in my throat. And I also don't know if the MCA info I am finding is credible as far as symptoms.

Sorry guys, I'm rambling. It has been a long day and I'm dreading tomorrow, something about making me do the test for such and such time or until I pass out has me a wigged. I hate the way the tachycardia makes me feel. The shortness of breath is the worth and they didn't relieve it today, it just had to pass and that has made me so weak!
12-12-2013, 10:30 PM   #15
my little penguin
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http://www.karger.com/Article/FullText/328760


http://www.medicine.wisc.edu/~willia...ation_2011.pdf

http://m.gut.bmj.com/content/59/9/1213.short


That should get you started
Fwiw atopic people have a lot of the signs of mcas but most do not have it
DS included.

Good luck
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12-12-2013, 11:29 PM   #16
Clash
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Thank you, thank you, thank you, my little penguin! I so appreciate the links.
12-13-2013, 11:50 AM   #17
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I looked up POTS because my memory was misbehaving at the moment and I could not remember what it was exactly. I usually don't look at Wikipedia but this actually gave a very comprehensive overview of it. One interesting thing the article mentioned was to rule out several things including Lyme Disease. I am wondering if you were tested for Lyme? A friend of our's son contracted Lyme this past summer in the middle of Staten Island. Not a typical place for Lyme to be caught. His main symptom was all of a sudden having double vision. She initially took him to the doctor and he said it was a virus. Then after a few days it did not go away so they ended up taking him to see a neurologist who had sent him for an MRI and they were actually able to see the infection in his brain. He was on IV antibiotics for over three months. Thank goodness he is doing much better. Anyway Lyme can be very tricky to diagnose and is very often missed which is why I bring it up. There is a special test done only at a lab on California that a lot of people recommend getting done if you have been already tested with the regular tests and it was negative. Might be worthwhile discussing with the doctor.
Good Luck Today. My Dad had the tilt table 5 weeks ago. He passed out when he bent over to take off his shoes. We rushed him to the hospital and they did not find anything so the doctor recommended the test. They found out he has bad orthostatic Hypotension. His blood pressure decreases when he changes positions to quickly. He has to up his salt and water intake and be careful when bending over.
12-13-2013, 12:01 PM   #18
Tesscorm
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Hope you get some answers from the test today!
12-13-2013, 12:18 PM   #19
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Hope the test goes okay and you get some answers.
12-13-2013, 02:36 PM   #20
Clash
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Kimmidwife, I will ask the doc about it.

I did the tilt table test today and I didn't pass out. The tech said I was borderline POTS, and probably had it. My follow up isn't until January 14th.

He said that lying down, I had a nice easy heart rate 70's to 80 but standing I had an all over the place heart rate, from high 90's to 124. He said my blood pressure is low and I have to eat more salt and drink more water.

Here is the thing, I told him and he told the doc I was started on 25mg metotoprolol but it made my blood pressure too low so it was halved to 12.5mg. Still my blood pressure is low(which is what the px is supposed to do) but it is not lowering my heart rate. The doctor didn't mention a med change and I have to wait around for 3 weeks with these tachy incidences and feeling like crap/cold/fatigued because this med I am on is making my blood pressure too low but not helping the problem. I swear I don't understand docs.
12-13-2013, 04:24 PM   #21
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That I agree with!
12-13-2013, 04:37 PM   #22
Clash
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I'm not a big salt eater and I'm not entirely sure how to get more salt into my diet. I didn't even cook with salt for years, and I have never really salted my foods. That is not to say I don't consume all the processed food that is high in sodium.

Oh and the Ped GI nurse called while I was in the test and left a message saying C's lab work was perfect. The doctor was really pleased...ummm ok so do we still need the increased dose of Remicade? I'm going to call on Monday and ask but I am assuming that the 3-4 days of ick right before the infusion isn't enough to affect labs and plus C's labs are never a great indicator. He is feeling fine since infusion, go, go, go, eat, eat, eat, eat, spend money, money, money....teenagers!
12-13-2013, 04:55 PM   #23
crohnsinct
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Well glad to hear C is feeling better but that was my first thought...his labs don't indicate inflammation! Just FC. Did he go back on the Mtx? I think I remember he was going back on. Don't ask me why but O's doc prefers shortening cycle over increase in med. If this cycle goes the same as last I would try shortening with the one. Gosh I remember before we figured O's regime out...she would say, "Mom it is time for infusion" Then came the d and blood. I couldn't get her in that chair fast enough. I hope they figure out what works for him. Our doc felt adding the Mtx helps get them over a few day hump if they are burning through the Remi too fast and on a short cycle. Now I am rambling.

As for you....UGH! So sorry things are still muddy and you are having to deal with this! But sounds like you have the cardiologist's ear and she is interested so here is hoping she figures this thing out.
12-13-2013, 05:22 PM   #24
Clash
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Thanks CIC!

C is on 7.5mg of MTX like O. I am hoping the upping of the dose will work for him because right now he is adamant he doesn't want to move the schedule up. I think it is just that we travel for the infusion since we do it at the GI office. We have considered moving it closer to home. I know our local hospital does them but it would be more expensive plus I'm not terribly fond of our local hospital. The next closest play is 45 minutes away. I might could bribe him if I allowed him to go on his own but still looking at bigger cost since it is a hospital as well.
12-15-2013, 12:38 AM   #25
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I donít have anything the add to what mlp has posted re: MCA Clash. Itís not something I have really looked into.

I surely hope you get to the bottom things though and if it is POTS a regimen that suits. The possibility that POTS may have an autoimmune aspect is an interesting take on things too.

So good to hear that C is growing! But I hear you on the weight aspect of things and the shortfall with the Remicade. Tess, you posted a study regarding whether it is better to up dosage or decrease infusion intervals didnít you? With the consensus being that decreasing infusion time had better results?? Ultimately though it will boil down to what C wants though.

Dusty. xxx
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12-15-2013, 04:58 PM   #26
Tesscorm
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Thanks Dusty, I'd forgotten about this study... study was done for RA but does discuss the differences in success between increasing dosage or frequency.


http://informahealthcare.com/doi/abs...09740701416758

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.
12-15-2013, 05:54 PM   #27
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Clash
I don't know if this will help but a teenage girl that rode the shuttle from our hotel while at Mayo was just dx with POTS. Her mom said her morning routine was to eat some saltine crackers in bed, then stretch and THEN slowly get up and lift weights. She has to do this every morning or she would pass out when she stood up. Also her docs said add salt to her salt.
12-15-2013, 06:52 PM   #28
my little penguin
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Tess link is broken??
12-15-2013, 09:40 PM   #29
Tesscorm
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Here's the link again.

http://informahealthcare.com/doi/abs...09740701416758

Otherwise, try from my original link in this thread, post 7
http://www.crohnsforum.com/showthread.php?t=57023

(link works for me if I go to the original thread)
12-23-2013, 05:19 PM   #30
Clash
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So just an update:

First C, things have been flying right along. We were going to get his flu shot two weeks after the last remicade but it was finals time and he always feels a little under the weather for a few days after the shot. So we were going to get it this week. He started running fever Saturday night, we went to the doctor today and he tested positive for the flu.

The doc prescribed Tamiflu. Does anyone know if he can have this with Remicade, GP said no problem but I have a call into the GI.

I now have a 30 day heart monitor on. The doc thinks POTS and neurocardogenic sycope, but every beta blocker they have put me on has given me horrible side effects. So far tried Toprol xl, florinef and pindolol, and now they want me to try Cardizem.

Also I had my Vitamin D level checked, it was 14! And also low on B12.

Last edited by Clash; 12-23-2013 at 05:35 PM.
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