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Crohn's Disease Forum » Parents of Kids with IBD » Transfer to adult GI and possibly stopping meds?


07-10-2016, 02:55 PM   #1
Sascot
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Transfer to adult GI and possibly stopping meds?

Hi everyone, sorry not been around much lately. Life got very busy for a while and we have just got back from our cruise.
Andrew has started the transition to adult services , that will complete in October I believe. Will really miss the kids IBD team!
He is still keeping well so the GI has mentioned stopping the mercaptopurine . They are saying there comes a point where the possible issues/side effects are higher than the good that comes staying on the med.
Need a bit of wisdom! Is it a bad idea to stay on the mercaptopurine long term? I do worry about the skin cancers, lymphoma, etc, etc. He wants to stay in it just now, but then no one has actually sat him down and explained why he should stop taking it. If he stops will he stay in remission or start having issues again, my poor brain doesn't know what's for the best.
07-10-2016, 03:06 PM   #2
ronroush7
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You could ask the doctor if he starts having issues again if he could start up again.
07-10-2016, 03:07 PM   #3
my little penguin
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I could understand switching to another med with less risk ( Mtx)
But stopping completely in kids where disease is more aggressive makes less sense
Just to "see" if he will flare which they know will happen
Adults are different and can sometimes only have one flare but not kids
Can you get a second opinion ?
I know your system is different
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07-10-2016, 04:37 PM   #4
Maya142
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I agree - there is LOTS of data showing that once you stop meds, the IBD tends to relapse, usually in a matter of months.

I completely understand the risks of being on 6MP, but I would ask about something like MTX instead.
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Mom of S (23)
dx with JIA at 14
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07-11-2016, 10:28 AM   #5
Tesscorm
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How often is labwork done? And would GI agree to an MRE as a follow-up 2 or 3 months after discontinuing 6MP? I'm wondering if Andrew can be very closely watched to see how he reacts to discontinuing 6mp.

Also, can 6mp dosage be reduced in very slow stages (ie over the course of a year) to see if there is any negative reaction?

As far as I know, 6mp can be restarted, however, that wouldn't necessarily mean any new flare would immediately be halted.

in kids where disease is more aggressive
MLP - would this statement still apply to Andrew? If he is a physically developed and mature young man, would the same 'child' risk profile apply to him now? (This is something I've wondered re S as well.) Is the 'more aggressive crohns' profile shown in kids apply only when they are kids or is it a higher risk profile that they carry forever (ie since they were dxed as kids, means their crohns is a more aggressive type).


FWIW, when my aunt was dxed with crohns (many, many years ago), after significant difficulty and a very long time of trying to reach remission, she finally reached it through imuran and remi. As this was very early remi use (20+ years ago), I assume not all was known and, after one year, she was taken off remi (because of risks) and left only on imuran (not sure how greatly antibodies were feared at the time). She had a very aggressive onset of crohns but, she has now been in remission (for the most part) for almost 20 years on imuran. She does watch her diet closely and does do low dose pred bursts if she begins to feel symptoms but, aside from this, she has been fine. So, in her case, moving to just one med didn't result in ongoing flares.

But, ugh , so difficult to know what to do in these situations with crohns being so unpredictable. :hgug:
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Diagnosed May 2011

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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
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07-11-2016, 10:30 AM   #6
Tesscorm
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Oh wait... I may have misunderstood!!! Is Andrew ONLY on 6MP?
07-11-2016, 12:17 PM   #7
my little penguin
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Tesscom
It doesn't matter the current age of the child/adult
The phenotype is based on the age of dx
Those dx as children especially under 10
Have a more severe disease course
The disease also changes over a 10 year span ( so of course not a child any more for the majority )
The disease typically starts as inflammatory and progresses to fistulas and or strictures
The disease location also tends to grow and encompass more of the intestine as the years move on.

With adults the type and spot at dx tends to stay the same

Fwiw ds stopped 6-mp for a washout period prior to starting.
6-mp and allopurinol
He was miserable in about a week of no meds
I couldn't believe the difference and 6-mp wasn't really strong enough for ds to begin with

Good luck
07-12-2016, 02:52 AM   #8
Sascot
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Thanks everyone. Andrew has only ever been on mercaptopurine as he has been stable for about 3 years now. He never had many symptoms other than a sore stomach, but after diagnosis he did develop one peri-anal fistula. That is my main fear that he develops another fistula as that was not fun. He is in his last year of school now doing advanced higher subjects and teaching himself advanced higher accounts, it would be awful if he flared in the middle. I wish he could just stay on mercaptopurine without any risks! There are so many hard choices with this disease 😢
07-12-2016, 09:27 AM   #9
Tesscorm
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As he's only on 6mp, I'd be worried about taking him off all meds. (Sorry, with most of my post above, I thought he was on a biologic AND 6mp.)

With 6mp, can you reduce dose and do keep a close eye with testing to see how he reacts? But do you even lower his risks by lowering 6mp dose?

Ugh, what a tough choice. I know part of me would LOVE the GI's optimism and I'd be jumping at the chance to get S off meds BUT I don't think I would do it... I think I'd be too worried that the common belief (for sure, here, on the forum) is that a relapse would happen. I've always thought, if S ever reacts to remi while he is in solid remission, I would consider LDN again but... that would be a situation where a med change was necessary and he was in solid remission. But, I would really need to be convinced to go to no meds at all.

What did his GI say about the risk of potential relapse? Did he give you any stats?

If I didn't feel comfortable making a decision either way, I would probably choose to, at least, wait out this year if it's going to be a challenging year for him at school, and put off the decision until next year. (And, if it helps at all, it'll be one more year of solid remission before going off meds.)
07-12-2016, 11:37 AM   #10
my little penguin
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For biologics but you get the idea

http://www.medscape.com/viewarticle/777320


And this. One
http://advancesinibd.com/archive/201..._Regueiro.pptx
07-12-2016, 11:41 AM   #11
my little penguin
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http://www.sciencedirect.com/science...73994614001482
07-12-2016, 11:44 AM   #12
my little penguin
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http://www.everydayhealth.com/hs/cro...ng-medication/
07-12-2016, 11:47 AM   #13
my little penguin
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Look at table 3

http://m.gut.bmj.com/content/50/4/485.full


The one year relapse rate was 36% (12/33) for patients continued on azathioprine and 59% (20/34) for patients who discontinued treatment.8 For patients in remission for more than six months the relapse rate on treatment was 31% (8/26) compared with 61% (17/28) for patients discontinuing treatment. In a similar retrospective review using 6-mercaptopurine in 105 patients with ulcerative colitis the remission rate was 65% (similar to this study).19
Life table analysis shows that maintenance azathioprine treatment is effective for up to five years of treatment. There is a gradual but acceptable increase in the proportion of patients who have relapsed over time. There is no suggestion that the effectiveness of treatment “wears out” after a specific duration. There is no support for the concept that treatment should be stopped after 3–4 years (because it is no better than placebo). A French study of 157 patients with Crohn's disease in remission for at least six months compared the relapse rate of 115 patients who continued treatment with 42 patients who stopped treatment. The proportion remaining in remission at 12, 36, and 60 months was 0.89, 0.78, and 0.68, respectively. For the 42 patients who stopped treatment the proportion of patients still in remission at 12, 36, and 60 months was 0.62, 0.39, and 0.25, respectively.11 These data are remarkably similar to our data. The authors concluded that azathioprine was effective for at least four years but observed that the two year relapse rate after four years of treatment appeared to be similar whether treatment was continued or stopped. However, this observation was based on small numbers (only nine patients). O'Donoghue et al also reported a similar relapse rate of 41% one year after stopping treatment (proportion in remission 0.61).2 Data from our study using Cox proportional hazards modelling showed that there was no difference in relapse rates for patients treated for <2 years, 2–4 years, or >4 years duration.

07-13-2016, 06:00 PM   #14
Sascot
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Thanks for the info, will have a good read through
07-14-2016, 07:30 AM   #15
Catherine
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We actually had this discussion with our Gi as Sarah really want to be med free.

This is what I remember from the discussion (it happened 3 years ago)

1. Year 12, due to stress during this year schooling. It is a common time for Crohn's to flare. - bad time to stop

2. There are a very small percent of people with Crohn's who will only have one flare. These people once in long term remission will not need meds to stay in
remission but there is currently no way knowing who they are. Less than 5%

3. Going off meds need closer monitoring that staying in meds.

4. Faecal calprotectin testing maybe a way knowing remission has enden before symptoms occur.

5. Stopping meds need to planned. You also need a plan for what symptoms or test results would cause you to restart meds.

6. She would support whatever decision S made but she could see one main reason only for stopping meds which be start a family.

If the s decided to stop meds, Gi would like the following for the best chance of success:-
- faecal calprotectin under 50 (this is normal range for someone without Crohn's)
- two colonoscopies at least year part that show no signs of Active disease including in biopsies.
- they would step down dose rate monitoring faecal calprotectin.

7. Do not stop meds while overseas as this is a likely time to flare due to changes in food ect.
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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)
07-14-2016, 08:45 AM   #16
Tesscorm
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Probably a dumb questions... but, any studies/knowledge that if a flare is identified very early on (ie as soon as an FC shows elevated rates), it can be stopped quickly? ie before progressing to a full or uncontrolled flare?

I assume the answer is that usually steroids will halt the flare but there is still the risk that the flare may not respond as expected... right?
07-14-2016, 08:50 AM   #17
ronroush7
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Probably a dumb questions... but, any studies/knowledge that if a flare is identified very early on (ie as soon as an FC shows elevated rates), it can be stopped quickly? ie before progressing to a full or uncontrolled flare?

I assume the answer is that usually steroids will halt the flare but there is still the risk that the flare may not respond as expected... right?
I think so.

07-14-2016, 09:05 AM   #18
my little penguin
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Here is the big issue with stopping
While on med people flare occasionally but the med has been keeping the inflammation most in check so flares are much easier to control /manage
There is no way to know that wothout meds a flare won't go from annoying to deadly right out of the gate

Ds stopped humira last year due to severe infection but stayed on Mtx
Only for a few weeks to a month tops
Things got ugly quickly and steriods were used in addition to restarting humira
It took 4.5 months of steriods to get things back under control

Sometimes steriods even Iv steriods don't work quick enough and surgery or worse is needed
That's like leaving the couch in the living room smoldering with a tiny unseen fire only a tiny bit of smoke while no one is home and hoping you catch it before the couch goes up in flames or the house burns down

It's not controlled at all
07-14-2016, 09:36 AM   #19
Tesscorm
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Yes, that's what I thought... Like everyone else, I would love to have S off all meds... but, my fear is exactly what you've described. I would never take S off remi while it's working but I often wonder what I'd want S to do if remi stops working...

Sascot - wouldn't it be nice to simply print out this conversation, have the GI read it and then get his thoughts as well!
07-14-2016, 09:49 AM   #20
ronroush7
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Yes, that's what I thought... Like everyone else, I would love to have S off all meds... but, my fear is exactly what you've described. I would never take S off remi while it's working but I often wonder what I'd want S to do if remi stops working...

Sascot - wouldn't it be nice to simply print out this conversation, have the GI read it and then get his thoughts as well!
I stopped Remicade on my own and ended up needing a resection. Hope I am not repeating.

07-14-2016, 09:51 AM   #21
Tesscorm
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Sorry you had to go through that!
07-14-2016, 11:28 AM   #22
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You've already been given great advice.
Let us know how it all goes.
Hugs
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I'm mom to............... Little Farm Girl 8 yr old
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dx Juvenile Arthritis
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dx Erthema Nodosum
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07-15-2016, 06:21 PM   #23
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I'll chime in here do to recent experience with my hubby who has been on imuran for the last 13 years (was put on it after peri-anal fistula) and was in remission, do to some insurance/doctor changes etc he was not taking his imuran for about 3 weeks had a bad flare, thought we were going to be heading to the hospital, had not seen him that bad in years. He started on EEN about 3 weeks ago so 6 weeks in and he is just starting to feel better.
I was shocked at how fast it went downhill.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-16-2016, 09:12 PM   #24
Tesscorm
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Jacqui, that's scary! But a good lesson for everyone. I'm glad he's starting to feel better, hopefully, he's on his way to full remission again!

(And great new pic!!! Very handsome boy! Our kids are all growing up! )
07-17-2016, 03:46 PM   #25
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Hi Sascot. I'm late to this but had to weigh in.

My son only takes omazpozale, uses SCD militantly and gets at least 30% of calories from formula (after many months of steroids and EEN). He is a year post clean scope and biopsy. HOWEVER...at his most recent appt, even after good labs and FCP every 3-4 months, lots of growth and no symptoms, you could tell the two Drs he saw were a bit nervous. Their point was although they are delighted and confused by his condition, they see enough silent inflammation that he makes them nervous. They only support the SCD/formula approach with crazy monitoring and even now won't take him off omeprozale which was prescribed for inflammation in duodenum even though it has resolved. Despite everything looking good, they pondered doing a pill cam before deciding on a scope, just to be sure.

I share all of that because it is another reminder of how generally elusive many people think remission really is with Crohn's.I don't know what the right answer is.

Whatever you decide, I hope to read about your son's remission for many years!
07-18-2016, 02:23 AM   #26
Sascot
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Thanks for all the great info! I will discuss things with Andrew and see what he thinks. If the meds didn't have such bad potential side effects it would be an easy decision to make - stay on the mercaptopurine since he is doing well.
07-18-2016, 12:13 PM   #27
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Sascot,
Wow that is a hard choice to make. I don't think I would take him off and not start something new to keep him under control. I agree with the others that looking into a different med may be the answer.
Fingers crossed for an easy transition! Keep us posted!
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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
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Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-21-2016, 09:49 AM   #28
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Hi Sascot
My son was diagnosed at age 6 with indeterminate colitis with fistulization in ano. He was put on 6mp. Just because of the anal abscesses and fisures, even though he was in 6mp only the abscesses were still coming. So 3yrs after they took him out of 6mp, and kept him on asacol and Flagyl he did great all those years. Until he got c diff this past March. That came and change everything. Abscesses were always there and still are, but they drain on its own. Because of e Cdiff he lost weigh and became anemic.. We are slowly but very slowly getting better, his still are solid. The urge that he used to have during this colitis is getting much better, he is taking only pentasa plus florastor. No other medication. He is doing fine. I have friends that keep telling us he should have been kept in 6mp . But why keep him on a medication that was not doing nothing .
Before they took him out of 6mp the doctor did a colonoscopy base on that she decided to take him off. but his crohns is just in the anus. Wich 6mp does not work, some secondary effects on 6mp are abscesses . So maybe that's why your son had a abscess.
Good luck.
Lizette
Michael 17
07-21-2016, 11:13 AM   #29
my little penguin
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Abstract
Although 6-mercaptopurine is often used to treat adolescents with intractable Crohn's disease, its long-term efficacy has not yet been studied in this population. This study shows data derived from 36 adolescents (mean age +/- SD, 16.5 +/- 3.3 years; 27 males, 9 females) treated at least 6 months with 6-mercaptopurine (1.5 mg.kg-1.day-1, maximum of 75 mg/day). Sites of Crohn's disease at the start of 6-mercaptopurine therapy included 17 ileocolic, 9 pancolic, 7 small bowel, and 3 partial colon. All had received corticosteroids, sulfasalazine, antibiotics, and nutritional support for 5.0 +/- 3.0 years before administering 6-mercaptopurine, but intractable symptoms persisted. Disease activity lessened during the first year of 6-mercaptopurine, reflected by a higher Lloyd-Still disease activity score (pre, 64 +/- 9 vs. 6-mercaptopurine, 72 +/- 11; P less than 0.0001). General activity, physical examination, nutrition, and laboratory subscores all improved (P less than 0.004). Lessened disease activity occurred despite concomitant decrease in duration of prednisone use (pre, 9.5 +/- 4.2 vs. 6-mercaptopurine, 6.6 +/- 4.9 months/year; P less than 0.001) and cumulative annual prednisone exposure (pre, 3672 +/- 2106 vs. 6-mercaptopurine, 1964 +/- 1460 mg; P less than 0.0007). The frequency of perianal fistulae and abscesses also decreased (P less than 0.01) during treatment. Annual rates of hospitalization decreased in 44% of subjects during 6-mercaptopurine treatment, while increasing in only 22%. Follow-up beyond 1 year of 6-mercaptopurine treatment showed continued remission in 23 of 30 subjects. No serious complications were seen. 6-mercaptopurine is an effective long-term therapy for adolescents with intractable Crohn's disease. While inducing remission, it also has a significant steroid-sparing effect which may be of particular benefit to this population.

From
http://www.ncbi.nlm.nih.gov/m/pubmed/1976562/

Studies show ( see above )
The frequency of perianal abscesses decreased in 6-mp
Not the other way around
08-01-2016, 08:31 PM   #30
killcolitis
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Hello all, I don't post here often but just saw this thread. This is what we've been told by our GI (top international ped GI with decades of clinical experience who publishes extensively on ped IBD) - children are severe at dx, the VEO kids more so than older kids/teens, but as they age the disease does become more manageable (generally). This is why she wanted to throw every med and more (than what we thought was reasonable) at my daughter to save her colon (we wanted surgery much earlier). So, your son might be able to come off meds, but I would definitely do all of the imaging, scopes, calpro etc first and discuss the pros and cons (including the risks of the meds) so he can help play a part in the decision. Good luck!
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