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Have you been subject to "bottom up" treatment or "top down"?

Have you been subject to bottom up or top down treatment?

  • Bottom up!

    Votes: 61 81.3%
  • Top down!

    Votes: 14 18.7%

  • Total voters
    75
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.
 
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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
 

DustyKat

Super Moderator
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. :)
 
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.
 
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
 

emmaaaargh

Moderator
Staff member
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!
 

hawkeye

Moderator
Staff member
Bottom up, but when I was diagnosed in the early 1990's, 5-ASA and and aza were probably the "heavy hitters"
 
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.
 
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!
 

rygon

Moderator
bottom up as you needed to have tried other drugs before going on biologics. Although it only took 3yrs before trying remicade
 
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.:)
 

SarahBear

Moderator
Location
Charleston,
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.
 

Catherine

Moderator
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.
 
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.
 

Jennifer

Adminstrator
Staff member
Location
SLO
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.
 
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.
 

nogutsnoglory

Moderator
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.
 
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.
 
Top down, due to the severity of the disease I was put on pretty much every drug under the sun right off the bat.
 
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.
 

Tesscorm

Moderator
Staff member
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.
 
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.
 
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.
 
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.
 
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?
 
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.
 
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.
 
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!)
 
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.
 

kiny

Well-known member
Neither really, it depended on my disease state. I kind of think that is how it should be. I don't think all patients should be treated equally, each person is different and it should be personalised.
 
I was a mix as well. Initially put on Pentasa which did nothing. A few months later added pred as things were getting worse. Had no response to pred and was still losing weight so skipped over aza and went stright to biologics (Remicade). Did well on Remicade and successfully dropped down to aza.
 

743

Location
us
first gi top down
second gi bottom up

pain wise top down was by far better. but i assume it comes with more possible side affects.
 
Top down. My kid was so bad we had no time to try the bottom. If it didn't take so long to get into a GI we might have had other options.
 

nogutsnoglory

Moderator
First gi bottom up and now I just get the big guns of treatment because they feel my disease state is very aggressive and can't be left alone.
 
Technically, my son had the bottom up approach, but it was an extremely rapid progression. He basically spent a summer in and out of the hospital. The first admit they did no real testing and tried to convince everyone it was a virus. The second time, they did the colonoscopy and found the crohn's and started the 6MP. The third admit ( and longest) they discovered the true extent of the crohn's involvement and gave me the wonderful speech that every mother wants to hear "Normally, we would do a resection, but he is too sick with the Crohn's everywhere else to try surgery" Instead they started him on Remicade, which worked great for 13 doses....and then triggered a grand mal seizure.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
I really can't vote because I've been subjected to both. I've been diagnosed with Ulcerative Proctitis which is located in the rectum. So, I mostly take Pentasa pills (top down), but when I flare I also take Canasa Suppositories which are bottom up.

Even when I was first diagnosed in '96 I was given both top down and bottom up at the same time.
 
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