Chicken to start 6mp

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nikki0294
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Date Joined Sep 2007
Total Posts : 219
   Posted 11/13/2007 7:05 PM (GMT -7)   
I am still afraid to start the 6mp but plan on doing so on Friday.  Is there any test to predict if a person is going to get pancreatitis from the 6mp? 
 
thanks
Chris

dustspeck
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Date Joined Sep 2007
Total Posts : 565
   Posted 11/13/2007 7:15 PM (GMT -7)   
chris - i understand completely! i am STILL waiting on blood work from october 30th (!!!!!) which is even more maddening, to see if i can go on 6mp. they were checking my tpmt levels and i got a message from my gi on friday saying my blood work was pending. whatever that means.

but on a good note, it seems to really work wonders for some people. this is my last chance before surgery. ....if i can ever go on the darm stuff!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 15mg prednisone (getting there!), 4000mg pentasa daily & vicodin for pain


inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 11/13/2007 8:22 PM (GMT -7)   
6mp worked miracles for me. The key is to be tested beforehand to see if you can take it (don't remember what the specific test was called but it is done by prometheus labs) and then to be regularly monitored to make sure you are getting a theraputic dose. I don't think this drug is scary so long as you have a good doctor and are closely monitored.
Currently in remission!


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 11/13/2007 9:10 PM (GMT -7)   
Don't fear it, all drugs have side effects which are bad. There's a small % you could get it, but then again there's a small % you could break a leg accidently tomorrow. I hate putting it that way but if you get or got the green light to take it, do it. Feeling better and having this disease in remission in the best thing in the world. I think i'm in remission as of Sunday, only side effects from pills now! :) We'll see in a few weeks.

Best of luck to you! :)
Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 25mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat and Restoril 30mg for the sleepless nights (thanks Pred!)


HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3130
   Posted 11/14/2007 5:52 AM (GMT -7)   
nikki and dustspeck....just wanted to say I am right there with you on being "gutless" about the decision to start 6mp/Imuran (pun intended).
I have read such wonderful things here. My local support group gave me some great input (one had a terrbile reaction to Imuran but has been on 6mp for years now). I feel comfortable more now with the side effects, but I still have that bad feeling in my heart so I put off deciding another 6months.
I also take into account that there are side effects to this disease also. As my Gi says, damage from this disease can be irreparable so that would be a side effect of not taking the meds. Heck I started with a ruptured intestine that was poisoning me to death....I guess chances on imuran are similar to chances of CD attacking me at this point.
Just keep talking and get to your comfort zone with the treatment. I hope it is as good for you as all the stories I hear. I will make my decision over the next 6 months and will probably be looking to you guys then :-)


Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Doc2007
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Date Joined Oct 2007
Total Posts : 294
   Posted 11/14/2007 9:39 AM (GMT -7)   
My doc and I decided to go forth with 6mp yesterday and I am picking up my perscription tomorrow. I hope this will help: Look at it like this...we go through so much with this disease, we suffer tremendous pain which requires hospitilazation at some points...But the one truth in all of that is this WE ARE STILL HERE AND WE ALWAYS COME BACK! We are like a Pheonix the fictional bird of ancient mythology. We are consumed by the flames of our own bodies! But we rise again from the ashes. I have a tatoo of a pheonix and will soon get another one. Its my reminder that I am a survivor and no matter how far down this disease will drag me and how much of my life it will consume by its fire...I know that I will come back.
 
Now this may be a bit dramatic but in reality any possible trauma that you may experience from taking 6mp can simply be remedied by coming off the drug...My Doc told me that yesterday and that the body will bounce back quick from any toxicity that could occur...
 
And remember its only in  a small number of folks!
 
Your not in that number and neither am I!

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/14/2007 2:09 PM (GMT -7)   
habs - i got my 6mp clearence today, i will definitely keep you guys posted about my progress! (so scared still!!)

doc - ok, obviously i need to start my zoloft cause your post made me cry! i am trying to stay as positive as possible. i keep telling myself, this is just another step to getting better.
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 15mg prednisone (getting there!), 4000mg pentasa daily & vicodin for pain


Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 11/14/2007 2:26 PM (GMT -7)   
you know I have only been in a flare for 6 weeks and I am not happy about it...I have been in flares for up to 8 months so I undertand completly both ends of the spectrum and how they can drain you of all energy, strength and will to live at some points...But I just tell myself at the end of the day I have my courage and my dreams that I can live a happy fulfilled life and that is where my optimism comes from...My dreams and my courage!
 
This disease does not scare me...

Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 11/14/2007 2:28 PM (GMT -7)   
Did you ever see X-Men the last stand. There is a part in the movie where Professor Xavior is telling Jean Grey to "Control her power do not to let it control her!"

I try and keep that in mind...That I will control this disease and not the other way around.

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/14/2007 3:01 PM (GMT -7)   
thanks for the inspiring words doc :) they are much appreciated, especially today, it's been kind of a rough day :/ BUT ...i am going to focus on the good ....FOCUS ON THE GOOD! i have been in pain since april, other symptoms for years (which i chalked up as food sensativities LOL) going on 6mp is just my next step to getting better :)

take lots of care!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 15mg prednisone (getting there!), 4000mg pentasa daily & vicodin for pain


hlc120
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/14/2007 4:09 PM (GMT -7)   
So inspiring Doc! Thanks for your post and good luck with your 6MP plan. I was Dx'd in 4/05 and started 6MP after a brief round of Entocort. I've been in remission ever since with no apparent side effects. My doc checks my blood every other month now. I feel fortunate b/c I hear so many stories about people trying med, after med, after med with no results. I hope 6MP will work wonders for you!
Good luck!

Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 11/14/2007 4:46 PM (GMT -7)   
I believe it is going to work because my Crohns has always been mild to moderate. Only getting severe in my younger years when I ignored the symptoms or wished them away until it was too late. Or the dumb doctors were just dumb enougth to watch me waste away! that happened twice! tow doctors two different hospitals...In those cases I had to save my own life.

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 11/14/2007 7:43 PM (GMT -7)   
Thanks to all for the encouragement! I guess I am so scared watching my daughter on 6mp for those 2 years as part of her chemo and having the hospital bag packed for the nights when she would spike a fever on 6mp. For whatever reason her wbc count would always bottom out when she caught any little virus while on 6mp. Then the docs would take her off of it and we would sit in the hospital as they pumped more antibiotics then I could name in her broviac as we waited everyday for those pesky wbc to come back. Granted I know her immune system was trashed from all the chemo but I am still scared !! I am being selfish because I don't want the 6mp to get me sick. I treasure everyday with my kids and the thought of the hospital totally freaks me out...ok enough venting...thanks so much for the support...you are all an awesome bunch of crohnies!!! Good night to all...Chris

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 11/15/2007 3:27 AM (GMT -7)   

I am really surprised by the fear that is being shown toward this medication. Not to be insensitive toward anyone, but I had some major sucess with this medication and wish that I could have stayed on it longer.  When I was on 100 mg a day, I had more energy than I ever experienced with any other drug.  The only reason that I had to change was due to my liver functions always being elevated. 

 It took a little while before the medication made a difference, but when it did it was amazing.  I have now been on remicade every month for the past 3 years at the max dose.  This medication help bring back the effectiveness of the remicade for a longer time.  I know that if we read all of the side effects of medications used for this disease, that is can really put the fear of God in you.  I have now been on every Crohn's medication known to man and 6-mp was one of the easiest ones for me.  I would much rather take 6mp than go one another round of pregnisone or other steroids.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/15/2007 9:31 PM (GMT -7)   
I'm with tsitodawg. I'm really shocked so many people fear 6mp. I think there are 4 posts on this right now. I don't think I've ever seen that around here.

I started 6mp 4ish years ago. Of course, my doc did the right things, testing me first to see if I could take it and monitoring me closely. I had absolutely no side effects and was in remission w/in months. That remission has lasted and after 3+ wonderful years on the med, I got off and stayed in remission. I think the side effects are rare and often the result of docs who aren't careful to test first and stay on top of proper dosing. I understand the need to know everything about a drug before taking it, but don't scare yourself out of a good thing. You deserve to get better.

goof luck all of you.
Currently in remission!


JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 11/16/2007 8:33 AM (GMT -7)   
Inflamed,

I'm just curious why you didn't stay on the drug for maintenance therapy? My doctor has me on it, and I've always been lucky about remissions, have usually had them for many years at a time. Did you discuss this at all? I know I've done a little research, and there's none showing that this can actually delay onset of another flare, but that doctors are still advised to give it as maintenance. I will be questioning my doctor about it on my next visit, was just wondering if you discussed this at all.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/16/2007 9:20 AM (GMT -7)   
Are you all saying that you should be tested before taking 6mp? What is the test? Lastly could my pancreatitis been
avoided if I had the test? Boy I'm feeling sooooo p***** right now. My old Gi just gave me 6 mp, no warnings, nothing.
Plus I only took it for about 3 months before my first acute attack of pancreatitis! I know I'm not alone with this. A couple
of months ago, we had a mom post on here, who's little 3 year old daughter who had suffered the same consequence......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dmc24
Regular Member


Date Joined Aug 2007
Total Posts : 37
   Posted 11/16/2007 9:23 AM (GMT -7)   

Not to be a downer, but I was on 6mp for a month and I had aweful side effects. It made me go to the bathroom more and my eyes got all blood shot, to the point where I thought my face was going to explode. I had sores on my legs and inside my mouth.

I would try the drug but just be watchful of the side effects.


Diagnosed with crones for 3 years. Pentasa put it in remission. Disease is now active again, going on 6mp. Still able to live every day to it's fullest.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/16/2007 9:27 AM (GMT -7)   
dunny - my gi tested my tpmt levels before i started the 6mp. did you have weekly blood work done? i am so sorry to hear you got pancreatitis from 6mp ...sounds like if could have been avoided :(

here's a link on tmpt: http://en.wikipedia.org/wiki/TPMT
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
15mgs prednisone (getting there!), 25mgs 6mp, 4000mg pentasa, vicodin for pain & boat load of other drugs for sleep and anxiety!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/16/2007 9:33 AM (GMT -7)   
Vicky,

There is a test they can do, TMPT (I think) that CAN tell you if you'll have a reaction. This isn't fool proof as there are many different reactions that can happen. Did your doctor do regular blood work when you started? I just had my 2 week blood tests done yesterday.

Do you think 6mp caused your pancreatitis? If so, it should resolve right?

I just did a bit of research because my joint pains are starting back up, and found that I could have a serum sickness reaction to 6MP the same way I did to Remicade. Funny since it's also supposed to prevent that. It seems though, that once you have a reaction, you're more prone to reactions to other drugs, sigh.

I'm going to take the drug again today and see how my joints are this afternoon (it always gets worse as the day goes on) and see if I should call my doctor (he's local today). But if that's what it is, all I should do is stop taking the drug.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/16/2007 10:13 AM (GMT -7)   
No I didn't have regular bloods done, maybe one in that period for liver panel.
The Gi told me that it was 6mp that caused the acute attack, and he told me not to take anymore of the drug. He was my old Gi and
this happened about a year ago. In fact I was hospitalized twice for acute pancreatitis.
My new specialist was concerned when I complained about epi-gastric pain. He asked if I had frothy and fatty stools, my answer to that
was yes, so he became concerned that my pancreas was damaged from the acute attacks, he called it scaring. So I started my testing
as you know. The stool samples, he said were conclusive for pancreatic insufficiency. Which means I now have chronic pancreatitis,
which is not reversable, and for me becomes another chronic disease to add to my list. However, if the first attacks had not been quite
so severe, yes it would have been reversible, just my luck I guess!!
Judy, watch your joint pain closely I'd hate to see you go through hell again.

Stephanie, thanks for the link...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/16/2007 10:54 AM (GMT -7)   
I did a little more research, it looks like the TPMT test that doctor can do, tests for possibility of bone marrow suppression and liver toxicity, NOT pancrease toxicity.

http://patients.uptodate.com/topic.asp?file=inflambd/14118
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/16/2007 11:24 AM (GMT -7)   
Thanks Judy, perhaps I don't feel so much animosity towards my old GI. However I'm still a little upset that he just handed me
the RX and didn't give any further instructions. Also, I was previously given Imuran which I reacted to. Would it stand to reason if
that drug didn't suit me, neither would 6mp? Aren't they in the same family of drugs?
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/16/2007 11:48 AM (GMT -7)   
Here's a good article, a little dated, but still good:

http://www.hindawi.com/GetPDF.aspx?doi=10.1080/09629359891045

An excerpt from the article:

The usefulness of screening the amylase level in
blood or urine has not been evaluated. However the
rapid onset of the pancreatitis will make the chance
of preventing clinical symptoms by early detection
rather small. Secondly some patients develop a
transient increase of the amylase level without clinical
symptoms.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/16/2007 7:48 PM (GMT -7)   
JudyK89, I went off because I am planning to have kids soon. We wanted to see if I could maintain remission without it and have the baby and breast feed without. Hopefully soon I will be one of those posting about pregnancy. We want to make sure I have some good blood work results first.
Currently in remission!

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