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04-12-2012, 10:57 PM   #1
Jennifer
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Saw my GI Today - More Pills! D:

My GI doesn't like the sound of my symptoms yet says I'm still technically "clinically in remission." Whatever that means now. D:

He's bumping up my 6MP from 75mg to 100mg. I've never taken that much before. Guys wanna refresh me on what to look out for if you have too much 6MP? All my GI mentioned was to look out for abdominal pain (too vague!).

He's also putting me back onto Entocort for 6 months.

It doesn't sound like remission to me especially since he said that my immune system is being overactive and that if we don't bump up and control it with the 6MP then he'll have to put me on Humira. Then he said something like, "at least you're not bleeding." What? Is that the only way I'll be considered in a flare now is if I'm bleeding?

He only does blood work and listens to my symptoms and how I react to medication. Is this a new type of medical practice that I'm not aware of? Sure I've had my diagnosis for years already but does that mean I shouldn't have other tests done? Or does that not really matter at this point? I had a colonoscopy, endoscopy and barium swallow done last year (hasn't been a year yet) and all looked good. If you think I should have more tests done, which ones? I've already had a resection and don't want another one.

Tonight I start taking 100mg of 6MP and for the first time I'm a little worried about what meds I take for Crohn's. I was hoping we could lower the dose.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-12-2012, 11:52 PM   #2
tots
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I am guessing your symptoms are a little more frequent than the Dr likes and wants to "squash" it before you are in a full flare up. It sounds reasonable to me- a flare up doesnt just happen to my way of thinking. It works itself into a flare- sometimes faster and stronger than others. My logic may be way off base.


I hope you feel better soon!



Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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04-13-2012, 04:41 AM   #3
Catherine
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Do your gi say that needed a blood in one to two weeks. My daughter aza was increased to 75 and she having a blood test tomorrow due the increase in med. Her gi said ths need s to be done everytime the aza dose is changed.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-13-2012, 05:48 AM   #4
handle
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Hey Crabby,
So what 'symptoms' are you having, and what evidence is there of an overactive immune system (i.e blood test results)? I think it's preferable to have hard information to figure out what to do with medications, even if it's sensible to be proactive where possible.
good luck.
04-13-2012, 09:49 AM   #5
Astra
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How confusing!
Good luck with the Entocort, and the increase of 6MP.
xx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

04-13-2012, 03:06 PM   #6
Jennifer
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@ Catherine - He said to continue getting blood work once a month. So that means I'll be getting it done again next week.

@ handle - Let's see, symptoms have been pain near my resection site (right of bellybutton) and LRQ. The pain comes and goes but always hurts when pressed (not like a 10 pain but around 5-8). Also have mucus in stool (its clear but is there with just about every bm), diarrhea (that's been going on for many months since I stopped the Entocort the last time I was on in around August), thin stool (when it does try to form), nausea (often after eating but sometimes just randomly or in the morning and more frequently while I'm having a bowel movement), increased joint pain (but I was just told I have Degenerative Joint Disease and GI agrees its Crohn's related), back pain (lower and mid, had x-rays done and showed mild arthritis), more frequent throat ulcers and random body aches as if I were sick. He said my blood work looked good but didn't give any numbers. My inflammation has always been pretty low so he was just going off my symptoms for sure. So now I wonder if my symptoms were bad enough to need an increase in the 6mp ya know?

This has been going on for months (with one issue being added on one by one over time) and I've been trying to tell my GI but I'd never get a response so I just made an appointment yet had to wait over a month for the appointment.

They have a system at their office where he can pull up the records from anywhere I've been and he noticed that I had been to the ER recently a couple times (one was for a tooth abscess/needed antibiotics and for random dizzy spells which they think was blood pressure related and the other time was to get antibiotics again for what looked like strep but was more than likely Crohn's related) and have been getting tests done (x-rays, an MRI and blood work) by other doctors.
04-13-2012, 03:20 PM   #7
Terriernut
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Crabby, are they testing your bloods every two weeks? Bumping up the 6mp or Aza needs to be tested like you are just getting started on the meds.

What to look out for, fatigue, breathlessness, (anemia) and pacreatitis.

I hope this works for you!!!!

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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
04-13-2012, 03:29 PM   #8
Jennifer
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What to look out for, fatigue, breathlessness, (anemia) and pacreatitis.
Those first three will be tough cause I deal with those already. D: But the last one is what I was looking for more info on. Thanks! I'll leave this link about it here so I can check it out when needed (and others too if they're interested. Think we need to add it to the wiki). Pancreatitis: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002129/

Edit: @ Terriernut - The blood work he said to just keep doing it once a month. I get it done again next week.
04-13-2012, 03:44 PM   #9
Terriernut
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Dusty will tell you, as will I that you should be tested every two weeks doing this regime with any AZA or 6MP drug. My RBC went to 7. Not good. Tell them they will SAVE money by checking your bloods rather than giving you transfusions! (not that bueacrats LISTEN)
04-13-2012, 04:00 PM   #10
Rebecca85
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Good luck with the new regime, sounds like you have been slowly slipping backwards (symptom wise) rather than nose diving into a flare. At least this should halt it in its tracks and get you back to full health before any actual damage (scarring etc) is done.
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Crohn's in the terminal ileum, dxed Jun '10

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04-13-2012, 04:04 PM   #11
DustyKat
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In my own mind, with IBD you are either in remission or you aren't. If you have symptoms and your GI is tweaking your meds to deal with those symptoms then you aren't in remission.

To be honest 100mg of 6MP isn't a huge dose and maybe it is more in line with what you should be taking. Based on normally setting the dose at 2-2.5mg per kilo of body weight how does 100mg fit with you?
The abdominal pain he would be talking about I would think is pancreatitis. You wouldn't be left guessing if it was. If you have any new upper abdominal pain then I would have it checked out.

I think it is reasonable to monitor your response to medication via symptoms and blood tests at this stage and perhaps throw in faecal calprotectin as well but should you not respond then scoping should be done.

Dusty. xxx
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04-13-2012, 04:20 PM   #12
Rebecca85
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Dusty- that's the dosage for aza. 6mp is typically a slightly lower dose than for aza (around 1.5mg per kg).
04-13-2012, 04:38 PM   #13
DustyKat
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Yikes! Of course you are right Rebecca! I have to stop mixing to two up!

Dusty. xxx
04-13-2012, 04:48 PM   #14
Rebecca85
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I confess, I had to google it...
04-14-2012, 12:40 AM   #15
Jennifer
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Ok so far I've only had an increase of the 6MP for one day but I'm noticing that my stool is floating which would indicate that its a fatty stool right? That's something I'm supposed to watch out for I believe for signs of Pancreatitis. Its not like I've never had stool like that before, I'm just being extra careful now and was wondering if its worth telling the GI or if I should wait and see if it happens again? I've gone 2x today and I think the first time was probably the same but I forgot to look in the bowel before I started wiping. Thus far that's the only noticeable change (might be more tired than usual but I can't tell, I also started taking Tylenol 3 yesterday for the arthritis but only took it once and it made me a bit loopy).

As far as whether or not that's too much for my body weight, I have no idea. If anyone wants to crunch some numbers feel free. I unfortunately weigh 158 pounds at 5'4".
04-14-2012, 12:48 AM   #16
Catherine
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I made that as 158 * 2.2 = 71 kg

71 * 1.5 = 106 .5 mg
04-14-2012, 12:51 AM   #17
Terriernut
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100mg is the correct dose for your body weight. Why I failed 6MP was because they put me on 100mg and I only weighed 113 lbs!

Just see how you go on the dose. If you feel terrible, let them know. Acute pancreatitis is actually more likely with Aza I believe, but perhaps Dusty can clarify that. If you can keep a log of symptoms, poos, etc.
04-14-2012, 07:40 AM   #18
DustyKat
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Hey Misty,

I don't recall reading that pancreatitis is more likely to occur with Aza over 6MP, articles that I have read seem to lump them in together with side effect statistics.

Dusty. xxx
04-14-2012, 11:37 AM   #19
Terriernut
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It was what my GI said Dusty, but I dont rate anything he says, that's why I said YOU would know!!!
04-14-2012, 12:57 PM   #20
Jennifer
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In my own mind, with IBD you are either in remission or you aren't. If you have symptoms and your GI is tweaking your meds to deal with those symptoms then you aren't in remission.
Most the information I can find on remission is a bunch of doctor's opinions. Thus far I think Rebecca85 is right to where I may be slipping but not quite in a flare. I had surgery a long time ago and I believe its the build up of scar tissue causing all this. So right now I may be simply dealing with an issue in my maintenance meds. http://www.ccfa.org/printview?pageUr...nt/maintenance Using the same meds at the same does forever doesn't mean the disease isn't still active, just under control (if not mostly). When they aren't working as well then you tweak the meds to keep you away from having a full on flare. This tweaking of meds may be all I need to get it back under control so at the moment, I refuse to believe I'm no longer in remission.
04-14-2012, 01:06 PM   #21
Terriernut
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I think you are catching it in time to prevent a full flare and that is a VERY good thing to do Crabby! I too dont call it a flare...I call it a pre flare (yes we dice words!)

I can feel it starting in me again...so I had my bloods done yesterday. You really need to stay on top of this disease! Hopefully you've done yourself a world of good and will not have further issues!
04-14-2012, 03:01 PM   #22
DustyKat
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Don't mind me Crabby, I'm too black and white when it comes to some things!

I want to/do believe you are still in remission too, hell you are the yardstick for my kids! No pressure or anything!

Good luck hun, I hope all settles ASAP!

Dusty. xxx
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