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05-07-2013, 08:44 PM   #1
saddad
 
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Questions about 6mp

I am new to the forum, I have a daughter, 13 diagnosed with Crohn's, the doctor would like to use 6mp as the maintenance medicine? Is this pretty normal? Does anyone have any thoughts or suggestions, I have read online some about the drug in the short moment since the diagnosis. It seems dangerous and has some severe/ fatal side affects. I am trying to do the right thing but can't risk the switch off from Crohn's to potential death, cancer, pancreas problems with the 6mp....your thoughts appreciated, her disease is in mainly in her small intestine and some in the stomach (moderate to severe)
05-07-2013, 09:01 PM   #2
my little penguin
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Dusty
Can you create a separate thread for the poster?


As far as 6-mp
That is a very std drug that has been around a very long time.
The potential side effects are scary but so are the potential side effects of Tylenol ( trust me you don't want to read them all)
Under treated crohn's has it own scary side effects.
Doc monitor kids on 6-mp very closely
Blood work is done every week to two weeks at first.
DS was on it for 8 months.
He had a small amount of trouble with the meds going to his liver.
The doc was on top of it and changed the dose very quickly.
DS only stopped 6-mp because it was not strong enough to relieve all of his symptoms.

You have to assess risk with benefits
Risk - 1 in 250 of a child dying in a car accident .
My child rides in one every day but we take safety precautions
Risk 1- 4000(?) of a child drowning
Same as above swimming all the time here.

6-mp risk of lymphoma
4 in 10,000 from taking 6-mp.
Risk without taking 6-mp is 2 in 10,000 for the average person on the street.

Benefit 6-mp can keep inflammation under control a d lower cancer of the bowel risk .
Less inflammation = less scaring = more usable bowel later.


I know its scary but finding a drug any drug that works is priceless.
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05-08-2013, 01:03 PM   #3
Crohn's Mom
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Hi Saddad and welcome to the forum.

I went ahead and moved your post to it's own thread, so hopefully you will receive more responses.

Good luck with your decision for 6mp. My daughter tried it years ago, and it failed her. She tried it again recently however she now seems to be allergic to that and Imuran.
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and Austin (18)
DX: Crohn's 7/2013
05-08-2013, 01:31 PM   #4
Jenn
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Welcome and sorry to hear about your daughter. It's important to realize that untreated IBD is much much worse and more likely of complications than the rare side effects of these strong meds. 6mp is tame in comparison to biologics, for instance, is well-tolerated, and a good first-start. Check out the perma-link of treatment clubs on here for more details. http://www.crohnsforum.com/showthread.php?t=44911
Good luck to you.
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
05-08-2013, 01:40 PM   #5
crohnsinct
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Hi sadad...welcome to the forum although I am sorry you have a reason to be here.

When looking at risks I ditto what MLP said. You have to look at the absolute risk. THe real numbers...not statements such as "your risk doubles". THat is pretty sacry but when you push docs for absolute risks 4 in 10,000 as compares to 2 in 10,000 is so much easier to wrap your head around.

It is a shame that you are hit with these choices at a time when you are vulnerable, emotional, scared and confused...at diagnosis. But ditto to th others, trust us is does get better and the drugs don't seem so scary once you see them work and your child living a normal active life, gaining weight, eating and thriving!

At dx I was in the same position but now am making med decisions left and right with much less fear. Even trying desperately not to have to drop a med I was so afraid of because it works for my daughter but it is causing a silly side effect that the doc wants gone.

Good luck! I hope 6MP works and gives you a long time to adjust before you have to face anymore decisions!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
05-08-2013, 02:42 PM   #6
crohnsinct
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Is this pretty normal?
Ha! Welcome to the world of nothing is normal! People have different disease locations, different symptoms, respond differently to meds, some have blood tests that tell the story, others need fecal testing, and still some require imaging and scopes and such. Some on immune suppressing drugs get sick frequently, others are healthiest kid in the house.

Take heart though. Over the next year you will begin to figure out your child's normal and figure things out. Don't be afraid to come here for advice or questions. I can gaurantee that while all our kids are different there is at least someone who has been in your exact same spot at one time or another.
05-08-2013, 05:42 PM   #7
Johnnysmom
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It is amazing how fast I went from not wanting my son on 6mp and being scared to death of it, to praying it keeps working and he can stay on it as long as possible.

It is a pretty standard drug for kids with IBD to take as their first medication. We have had great results with it and no side effects.

Hope it works for your girl!
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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05-08-2013, 05:50 PM   #8
ChampsMom
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Hey SadDad...

Sorry about your daughter's recent diagnoses. I think it is hard to say which med is the best to start with as it really depends on what your daughter needs at this point. When my son was diagnosed a couple of years ago (at 13) he was put on Pentasa, 1500 mg/day. After a year, the doctor wanted to move him on to 6mp, but I was resistant (as you are) and talked with the folks here about it - some who have had life saving results from 6mp!! In the end, it was agreed with my doctor that we'd raise my son's dose to 3500 mg/day to see if that would solve his issues. For him it worked...

Learn as much as you can and ask lots of questions! The Moms and Dads on this forum are extremely knowledgeable (blow me away, I can't believe they don't hold MDs themselves knowledgeable!!) and I pray the right answers come your way soon!

God bless you and your family!!
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Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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05-08-2013, 10:54 PM   #9
CarolinAlaska
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My daughter was diagnosed at age 13 (in January) and was started on 6MP as the first maintenance med. So far we're at the original dose and have not had any side effects. I'm happy about that and choose the small risk of bad side effects to the almost certain poor effects of uncontrolled crohn's. It was really scary at first and I kept putting it off because Jae was getting lots of viruses and I was afraid, but since she started the 6MP, she really hasn't had any...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
05-09-2013, 02:57 AM   #10
Sascot
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Hi. I can understand your reluctance to give the 6mp - I fought for a few months not to give him anything, but in the end the inflammation was going up, so we had to give in. We are on week 13 of the 6mp and so far my son has no side effects apart from some tiredness (but then he is a teenage boy ). I still hate giving him those little tablets every single day, but as others have said - the danger of undertreated Crohn's is very real as well.
6mp is one of our GI's first treatments for Crohn's before moving to some stronger ones like Methotrexate and Remicade.
Make sure the blood tests are being monitored regularly - we did 8 weeks of weekly bloods, then 2 weekly and now we are on monthly bloods.
Good luck with your decision!
05-09-2013, 03:56 AM   #11
Catherine
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My daughter has been on the sister drug aza for 15 months without any side effects.
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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)
05-09-2013, 04:35 AM   #12
dodie74
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Hi and welcome to the forum. My son was diagnosed 3 years ago at the age of 7. I was very reluctant too about the 6mp and cried my eyes out but im glad to say he is doing very well on it along with salofalk. we are now down to 3 monthly bloods and so far so good. Good luck. xx
05-10-2013, 06:55 PM   #13
saddad
 
Join Date: May 2013
Thanks for all the well wishes, thoughts and prayers! I am sorry I did not respond more timely. I have been busy trying to gather info seeing doctors and trying to make the best decision on medicines. We have seen a GI doctor who has recommended we start with the 6MP. That is when my research started. I did not like what I was reading and we opted for a second opinion which happened today. The doctor we saw today recommened Methotrexate. I had originally researched this some as well and originally thought it may be less problematice with less severe side affects. But after digging deeper I found it may be a little more dangerous. I am not real sure now as the info I read often contradicts what I read somewhere else. Either way I know she can not stay on the steroids (they hit it like a sledge hammer and she has not had any problems. She has gained 9 lbs in 2 weeks since the start of them. The 6Mp will be a pill everyday (25mg), the methotrexate will be an injection 1 time per week (22mg). If you have any advice or opinions please let me know. We will need to make a decision in tears tomorrow. Thanks for all the responses and prayers thus far!
05-10-2013, 07:23 PM   #14
ChampsMom
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No advise as I've not been down that road - but wanted to let you know - no apologies needed - Job #1 taking care of your family! I'm sure someone will come through with recommendations - just remember every child takes to a drug differently. I pray you'll be able to find peace and remission in your decision!!

Good luck! God bless...
05-10-2013, 08:03 PM   #15
my little penguin
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DS has been on both methotrexate and 6-mp.
6-mp was easier since it was just a pill for DS.
Injections are hard on little kids.

DS is currently on humira which is an injection every other week.

Good luck
05-10-2013, 09:46 PM   #16
Patricia56
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6-MP has a better track record.

Shots can be (are) traumatic for most kids.

It is not unusual to have a definite reaction to methotrexate injections that is unpleasant. Usually flu-like symptoms - fatigue, aching muscles, nausea - for a day after the injection.

But the same can be said for 6-MP, especially when first starting it.

Both require regular labs, frequent during the first 3-4 months then tapering down after that.

Did anyone recommend or suggest using a liquid diet in addition to the steroids? This might help her get off the pred quickly and bridge her until the 6-mp (3-4 months) or MTX (6-8 weeks) kicks in or your figure out that the med is not working.

Best wishes
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
05-10-2013, 09:54 PM   #17
saddad
 
Join Date: May 2013
yes the doctor we saw today recommended liquid diet with the methotrexate....our daughter also has a dairy allergy so some of the liquids she suggested would be an issue for our daughter to take.
05-10-2013, 09:58 PM   #18
Patricia56
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There are many options for liquid formulas. You would need to know whether she is allergic to the actual milk protein or to lactose or to both.

But the bigger issue is whether she would cooperate with using them. Generally it works best at first to go to an exclusive liquid diet - no regular food or beverages except water.

This can be very difficult to tolerate, depends on the kid.

However, if it works it can relieve most/all symptoms within 2 to 4 weeks with symptom improvement within a matter of days. It is as successful as predinose at putting a child into remission without the many dangerous side effects of prednisone.
05-10-2013, 09:58 PM   #19
Patricia56
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The doctor that recommended MTX - what was the reasoning he offered for that vs. 6-MP?
05-10-2013, 10:03 PM   #20
saddad
 
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our girl is amazingly strong in the eye of this monster. she won't have a problem with the shots. I don't know why but my instinct is saying stay away from the 6mp...the doctor who suggested this is right here in our backyard, he is very a pleasant, and caring doctor. He has about 60 patients that he is currently treating for Crohn's. The second GI doctor we saw today is about 1.75 hours away and they have about 700 being treated for Crohn's. They are also in the top 10 category in the country for treatment of Crohn's and they are recommending methotrexate. I was wondering also if the methotrexate did not work or had and issue where we could not use it, could she then try the 6mp or is this a step back as far as drug potency goes? Does anyone know this answer or have you tried these drugs in this order?
05-10-2013, 10:16 PM   #21
Patricia56
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No you can switch between the meds with no problem.

My son has been on each of these -not at the same time. 6-MP was not sufficient and we had to add Humira to get him into remission. We later switched him to Humira + MTX and he is now on MTX alone.

I have not reviewed the most recent research on this but, unless has changed in the past few months, the research has favored 6-MP over MTX in treatment of CD.

But what is true is that we can't predict who will respond to one and not the other medication at this point.

If your gut is telling you to go with MTX then that's what I would do.

And, once she gets established on MTX, if it is effective she may be able to switch to oral MTX instead. That's what my son is on and has been for a couple yhears now.

Someone at home will have to give her the shots and this can be hard on the caregiver if the shots are painful to the child. Just something to keep in mind when you are making your decision.

Last edited by Patricia56; 05-11-2013 at 12:40 AM.
05-10-2013, 10:18 PM   #22
saddad
 
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The doctor that recommended MTX - what was the reasoning he offered for that vs. 6-MP?
The doctor stated that their choice of drugs for Crohn's treatment is the methotrexate due to the side affects of the 6-MP....it is all confusing to me....more like trial and error
05-11-2013, 12:50 AM   #23
Patricia56
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You are right - it is often trial and error. But there are not actually a lot of choices as you have discovered.

6-MP and Methotrexate for treatment after stabilization with predisone (rescue med), budesonide (a different steroid formulation), or liquid formula.

If the disease is severe enough then a biologic would be used instead of or in addition to 6-MP/MTX sometimes starting within days of diagnosis. Remicade, Humira, Cimzia.

There are a few other meds used infrequently when a patient doesn't respond to these but they aren't used much because most kids respond to one or some combo of the above medications and/or the side effect profiles are more difficult.
05-11-2013, 02:25 AM   #24
CarolinAlaska
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We were recommended 6MP or AZA first, probably because there isn't an injection involved. Methotrexate always freaked me out due to the fact that it is chemotherapy for cancer patients and heavy duty treatment for rheumatoid arthritis... I think it is just the way you look at it. I've read of many people who didn't have any side effects to 6MP, and my daughter didn't either. They test different things in the beginning to make sure your child metabolizes it correctly. If she does, then they just test the blood counts and the liver regularly. I know how it goes, when you just don't feel right about something... sometimes I wonder if that is God trying to help us make the right choice? I felt strongly about prednisone and didn't want to go there if we didn't have to. I pushed for the liquid diet instead and our GI doctor was open to it. We still have our unopened bottle of prednisone, we haven't needed. I hope the decision becomes clearer.
05-11-2013, 05:49 AM   #25
DustyKat
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Hi saddad,

I can't add to the fab information you have already been given but you might like to read this older thread that has relevance to what you are asking...

http://www.crohnsforum.com/showthread.php?t=34021

Dusty. xxx

PS. See Tess, elephants really do never forget! I remembered your question!
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05-11-2013, 08:47 AM   #26
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And, I stand by my ending post!

OMG, you are too amazing, Dusty!!!

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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
05-11-2013, 12:04 PM   #27
crohnsinct
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I wonder if the suggestion to use Methotrexate is being offered for the "just in case" you have to add Remicade or Humira down the road. It seems most docs who have to combine biologics with another med are choosing Mtx over Aza or 6mp these days.

FWIW - my daughter is on Mtx and no problem with side effects so far. She takes the oral and supposedly risk of side effects is higher with oral dosing. Can't comment on risks yet as she hasn't had her first blood test since starting but I am really concerned about her liver as we have liver issues in the family. She also has psoriasis which will return normal liver tests even though there is still damage so down the road we will biopsy which only adds to my paranoia about potential liver damage simmering away.
05-11-2013, 09:15 PM   #28
kiny
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for 6mp I would recommend avoiding sunlight whenever possible, 6mp in cells reacts with UV light, there should really be a warning on 6mp about sunlight, since it's actually easy to avoid skin cancer while on 6mp by simply avoiding sun, or when you are in the sun, use a high grade sunblock

I was talking to a doctor the other day, and the region they have seen most of the skin cancers when people were on 6mp, was near the temple region. It might be because the face is most exposed to the sun and when people use sunblock the side of the temple region is often not covered in sunscreen. Whatever the reason, it's easy to protect yourself or your child from these type of things by taking care of your skin.
05-11-2013, 09:28 PM   #29
Mehita
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kiny, I assume that applies to Azathioprine too?
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
05-11-2013, 09:33 PM   #30
kiny
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right, it does, actually most of their knowledge about this came from people who had organ transplants who are often put on azathioprine

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2426755/
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