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Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » Have you been subject to "bottom up" treatment or "top down"?


View Poll Results: Have you been subject to bottom up or top down treatment?
Bottom up! 60 81.08%
Top down! 14 18.92%
Voters: 74. You may not vote on this poll

 
08-07-2013, 01:51 AM   #1
alex_chris
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Have you been subject to "bottom up" treatment or "top down"?

Bottom up: You got diagnosed, your doc/GI said you got "mild" Crohn's and you were put on 5-Asa (asacol, pentasa etc.), then once 5-Asa fails (it often fails), you got switched to azathioprine/6mp and then (if that failed) to biologics (remicade, humira, cimzia etc.) or combinations etc.

Top down: You got diagnosed and your doc/GI started you on biologics and potentially in addition on azathioprine/6mp right away. Then, if things get manageable, the doc/GI tries to get you off biologics/aza/6mp again.

I have found an interesting article (although in German) which looks at the benefits of top down vs. bottom up strategies. http://www.dccv.de/typo3temp/br_pdf/PDF_j2nAhx.pdf The article classifies patient developments into 4 groups (page 21) based on how the Crohn's is developing. For two groups (chronical development of disease with continued flares - 25% of patients - and high up and down developments - 30% of patients) the authors say they think top down is the right strategy, while for the other two groups (high flare initially, then good management of Crohn's - 40% of patients - and little in terms of problems for years, then big problems - about 5% of patients) the bottom up strategy would be more beneficial.

I was wondering whether people are being told about the two strategies by doctors when they were diagnosed and told about the history of how those strategies developed.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!

Last edited by alex_chris; 08-07-2013 at 02:42 AM.
08-07-2013, 02:38 AM   #2
rollinstone
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Very interesting, my GI is bottom up in my case, I was dx last yr around end of sept start of October, was on pred for about 8months, pentasa, then imuran. Started to go into remission and was off pred for about 4-5months then just recently started flaring after a rather positive colonoscopy (only showed mild inflamation in one small section limited to the colon). So iv just started on pred after liquid nutrition wasn't working. Plan is to increase the Aza 25mg higher while i taper off
08-07-2013, 02:47 AM   #3
DustyKat
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Hey Alex,

For many of those in countries with universal health care you will find that strict guidelines apply when it comes to the prescribing of biologics. Therefore the top down approach is not an option.

Dusty.
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08-07-2013, 03:03 AM   #4
alex_chris
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Hey Alex,

For many of those in countries with universal health care you will find that strict guidelines apply when it comes to the prescribing of biologics. Therefore the top down approach is not an option.

Dusty.
I can only speak for Switzerland, Austria, Germany and the UK (I have lived in those UHC countries + in the US, which we all know has a very different system). There it depends on the GI you end up with. The insurance system doesn't require them to start bottom up, if the relevant GI wants to go top down.
08-07-2013, 06:33 AM   #5
rollinstone
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yeah, Australia does the step up approach, I saw my GI today, he said plan is to max my Imuran to 2.5mg per kg, wants me to do a quick taper off pred said I shoulda started on 40 as opposed to 50, but ohwellll I got a tour n stuff coming up so I needa get fixed up asap
08-07-2013, 07:34 AM   #6
emmaaaargh
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Bottom-up. By choice, though. My GI wanted me to start on Remicade even though I actually didn't fit the NHS guidelines for prescribing it - as I hadn't even tried Azathioprine and responded really well to Prednisone. I'm glad I chose to go on Azathioprine, though, since I'm doing great on it!
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: waiting to start Humira!

08-07-2013, 09:59 AM   #7
hawkeye
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Bottom up, but when I was diagnosed in the early 1990's, 5-ASA and and aza were probably the "heavy hitters"
__________________

Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
08-07-2013, 02:04 PM   #8
Cosmojo
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top down. My doctor regretted that he had to do it that way but due to the severity of my disease at diagnosis he was not willing to allow me to get any worse. Humira double dose, 6MP, and high dose prednisone from day 1.
08-08-2013, 05:06 PM   #9
Essieluv
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I'm a mix. I started out on Pentasa, Entocort, Cipro, and Flagyl when I was first diagnosed. When that didn't work and I had a really bad flare a couple weeks later, I was put on Remicade; then I tried Humira, and now Cimzia. But I'm still flaring, so now I'm possibly looking at Methotrexate, Azathioprine, 6mp, long term antibiotics, or surgery. If that's not confusing, I don't know what is!
08-08-2013, 06:16 PM   #10
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Bottom up - Lialda, then skipped steroids due to a fistula, cipro/flagyl combo, now on 6-MP and starting LDN soon
08-08-2013, 08:42 PM   #11
rygon
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bottom up as you needed to have tried other drugs before going on biologics. Although it only took 3yrs before trying remicade
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08-08-2013, 09:13 PM   #12
Crohn's gal since 1989
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Bottom up, but when I was diagnosed in the early 1990's, 5-ASA and and aza were probably the "heavy hitters"
Same with me! First two GI's were ready to only prescribe asacol. Current GI 10 years ago was bottom up

Pentasa, then Entocort, Then Azathioprine (Imuran).

3 years later Prednisone and Azathioprine

7 years ago same Prednisone & Azathioprine

This year straight to Prednisone & Azathioprine with plans to go to Remicade.

I have a resection planned for late October, then straight to Remi.
__________________
Bonnie

Diagnosed 1989
Asacol,Pentasa and Entocort (didn't work in 2005 and didn't work now)
Done with Prednisone 09/07/13
Azathioprine (Imuran)150mg no longer working
Developed allergic reaction to Humira injection!
Currently trying Remicade with Methotrexate
Still trying to get into remission!

Ileocecol resection surgery
September 14th, 2013.
55cm small bowel removed!
08-08-2013, 10:02 PM   #13
SarahBear
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Neither of these strategies were mentioned to me, and neither were used. My GI started me on an intense Prednisone taper and 6MP, then switching to methotrexate simply because the injections were easier for me. So I would assume she looked at the scale of medications you laid out and the severity of my disease at the time and chose the one that would correspond on the scale. A more individualized approach.
__________________


Sarah.
Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

08-08-2013, 10:36 PM   #14
Catherine
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My daughter started with AZA and pred at dx. You need these to fail you for going any higher.

Next step is methotrexate if they can't get aza in range. Or maybe LDN.
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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)
08-08-2013, 10:46 PM   #15
723crossroads
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Mine wanted to do bottom up because I had cancer a couple yrs ago and biologics can cause cancer. He said it is the right strategy for me. He sees if the lesser drugs work first. They did for me and now recently went in flare up and going to get a pillcam. Had a catscan several months ago and nothing showed up that time.
08-09-2013, 12:05 AM   #16
Jennifer
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I was diagnosed back in 1991 so a lot of treatments weren't available in the USA at that time. I was not told that I had a mild case, if anything it was severe. Due to the time period and my insurance (before starting certain medications the insurance required you to try other cheaper options first) I was forced to do a bottom up approach. I had my first resection 8 years after my diagnosis.

After doing my own research I stand behind the top down approach as full mucosal healing is most important and the stronger medications do tend to get the inflammation under control faster. The more inflammation that hangs around only creates more scar tissue over time which can result in surgery sooner than any of us would like.

Bottom up, but when I was diagnosed in the early 1990's, 5-ASA and and aza were probably the "heavy hitters"
Indeed hawkeye. Back in the day 6MP was considered hard core and I remember everyone being nervous about having me on it. Hence one of the reasons why I don't fear the biologics as much as others seem to. To me they're just newer treatments. It's not like any of the medications out there don't have the possibility of severe side effects.
__________________
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.
08-09-2013, 12:25 AM   #17
Tired
 
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Bottom up, I was diagnosed in 2001, and he told me right away at the time... first, mesalamine preparations, if this does not work to induce remission, prednisone, then later immunomodulators.

I first took mesalamine preparations, then prednisone, then 6-mp which after 6 years screwed my lymphocyte counts. Then Entocort... I had prednisones in betweens. I'm now supposed to take biologics.
08-09-2013, 07:29 AM   #18
nogutsnoglory
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Initially I was treated with the bottom up approach when my crohn's was first diagnosed and not as severe. As things became very severe it has always been the top down approach. The doctors I have seen seem to now believe its better to bring out the big meds early for most cases of Inflammatory Bowel Disease.
08-09-2013, 08:40 AM   #19
Clash
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My son first saw an adult GI who before the colonoscopy discussed the bottom up approach, not in so many words just that C would probably be on a 5ASA med. In recovery from the colonoscopy the GI stated his disease was severe and he recommended we go straight to Remicade. We agreed but wanted a second opinion and his care to be handled by a Ped GI. The Ped GI, once going over all C's history and tests, discussed both treatment strategies and why he felt top down was warranted in C's case.
__________________
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
08-09-2013, 09:23 AM   #20
AlexJ
 
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Top down, due to the severity of the disease I was put on pretty much every drug under the sun right off the bat.
08-09-2013, 10:04 AM   #21
Jmrogers4
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Jack started on Aza and Pred, moved to MTX, back to Aza, now on LDN.
Hubby dx'd in early 90s so I don't remember there being a whole lot of choices. Asacol/Pred, Pentasa then Aza.
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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
08-09-2013, 11:56 AM   #22
Tesscorm
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Seems that both approaches were used for my son... diagnosed by ped GI at 16 years old, treated with exclusive enteral nutrition and maintained clinical remission with EN for 1.5 years. Upon transfer to adult GI at 18, after scopes, etc., his approach was to move directly to remicade to eliminate all inflammation.
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Tess, mom to S, 22
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
08-09-2013, 12:07 PM   #23
Johnnysmom
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Top down.

Straight to Prednisone and 6mp. Our GI said my son's case was mild but that he would never recommend 5Asa meds as he felt the covered up symptoms but let inflammation simmer. Since he was a Ped GI I really don't know if he would take the same approach to an adult diagnosed with mild crohn's.

He also stressed that the term "mild" was just how things look that day during the scope. That disease course was difficult to predict and we were rolling the dice as to what course things would take. Once a patient is in remission, with mucousal healing, then you can look at what the history of your disease pattern is and your personal indicators that tell you something is going on.
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Mom of Johnny
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
Multi Vitamin
Vitamin D3 1000mg
Prayer
08-09-2013, 06:17 PM   #24
shamrock15
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Mine has to go bottom up - biologics didn't exist when I was diagnosed. Mine was quite active when diagnosed, and stayed pretty aggressive for about two decades.
08-11-2013, 08:14 PM   #25
DougUte
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I can only speak for Switzerland, Austria, Germany and the UK (I have lived in those UHC countries + in the US, which we all know has a very different system). There it depends on the GI you end up with. The insurance system doesn't require them to start bottom up, if the relevant GI wants to go top down.
Alex, there may not be a government requirement for the bottom up system, but most insurance companies are not going to approve a biologic first. They want proof the less expensive meds will not work. When my doc prescribed Humira, it was denied twice.I WA forced to take meds for 6 months that did nothing for me. This is even though I had surgery and my case was severe.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
08-11-2013, 08:59 PM   #26
Sailorluna
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I was diagnosed on the operating table with an full obstruction/resection. i was told that they prefer to start with all guns blazing and put me on Azathioprine. And then discussed biologicals for a good year before actually starting the Humira. So... not sure if it really is top down since it was really just aza at the start. So would that be something in between?
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
09-03-2013, 05:39 PM   #27
ce1210
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I am being treated with the bottom up approach started with asacol hd and pain killers which constipated me and made things a million times worse, then had colonoscopy and started entocort, now doc wants to taper off entocort and go to 6-mp...but got a skin infection on my leg and taking doxycycline and waiting to take 6-mp. Entocort helped me a lot but I also did a liquid diet for a month and then slowly started adding foods back in. I don't do lactose, casein, gluten, red meat, caffeine, alcohol, raw vegetables(unless juiced) and take in as many probiotics as possible. Also not eating anything with artificial colors or flavors or preservatives.
09-04-2013, 12:55 PM   #28
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Bottom up. I was started on pentasa and prednisone, and the plan was to put me on biological, but they couldn't get things under control long enough to actually go that route. I ended up having a resection (they removed 80cm, 1 fistula and 2 abscesses, one of them had burst) less then 2 months after diagnosis, after 4 admissions to the hospital. The surgery put me into remission, and I'm still on pentasa u til things act up again.
01-02-2014, 01:37 AM   #29
HalfHeartedHeroine
 
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I guess I'm doing the bottom-up approach, first no medicine immediately after surgery then azathioprine, then upped azathioprine plus entocort, azathioprine plus more entocort, then azathioprine and "What was your last doctor thinking, having you on Entocort this long?!"... while I still have flare-ups, Current Doc is hesitant to move me up to biologics, which I understand.

(also, I thought this was going to be a joke about orally- versus rectally-administered medications... oops!)
01-02-2014, 09:51 PM   #30
Mehita
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Bottom up for my son, and totally regret it. Essentially lost two years of growth, which is so critical for kids, while waiting for Pentasa, then Azathioprine, to not work. He's now on Remicde and doing well.
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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
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