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Crohn's Disease Forum » Treatment » What was your first treatment?


06-22-2017, 01:14 PM   #1
Cachoue
 
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What was your first treatment?

I'm curious.
After diagnosis, what is the first treatment you had to try and why (If you know the reason)
Is there some kind of pattern (as in most people start with X, then it goes to Y if it doesn't work)?
06-22-2017, 01:17 PM   #2
ronroush7
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I think one of my first treatments was sulfasalasine (sp? )

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-22-2017, 01:17 PM   #3
Sophabulous
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After the initial pred it was Pentasa, but that made me feel awful. Now on azathioprine which doesn't appear to have done anything for me so looking at a biologic!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
06-22-2017, 01:20 PM   #4
seebee
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I started on Pentasa and Azathioprine. It really depends on the doctor - some prefer a top-down approach while others prefer a bottom-up.
06-22-2017, 05:54 PM   #5
my little penguin
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There is a treatment pyramid
So you can do bottom up theory where they GIVE you the least effective (but lowest risk meds first ) and work up from there
More GI are now starting with top down theory
They use the most effective drugs (highest risk though first )

But some still have insurance guidelines
Whiich require the cheapest (bottom of the pyramid) first before moving up


http://www.hopkinsmedicine.org/gastr...ns_disease.pdf


Ds started
1.) on pentasa(5-asa)-failed
2.)Then 6-mp (failed)
3.)Plus asacol (another 5-asa) failed
4.)mtx failed
5.)remicade -reaction
6.)-now humira plus mtx

So up the pyramid one step at a time
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06-23-2017, 07:13 AM   #6
Crispix73
 
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There is a treatment pyramid
So you can do bottom up theory where they GIVE you the least effective (but lowest risk meds first ) and work up from there
More GI are now starting with top down theory
They use the most effective drugs (highest risk though first )

But some still have insurance guidelines
Whiich require the cheapest (bottom of the pyramid) first before moving up


http://www.hopkinsmedicine.org/gastr...ns_disease.pdf


Ds started
1.) on pentasa(5-asa)-failed
2.)Then 6-mp (failed)
3.)Plus asacol (another 5-asa) failed
4.)mtx failed
5.)remicade -reaction
6.)-now humira plus mtx

So up the pyramid one step at a time
Is the point of the top down approach to start with the top drugs (biologics) and then, once remission is reached, try to go down the pyramid to a lower level drug for maintenance? Or is t just that you start at the top and stay at the top? I keep seeing these two terms mentioned, but am not quite sure the theory behind them.
06-23-2017, 07:56 AM   #7
Sophabulous
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Is the point of the top down approach to start with the top drugs (biologics) and then, once remission is reached, try to go down the pyramid to a lower level drug for maintenance? Or is t just that you start at the top and stay at the top? I keep seeing these two terms mentioned, but am not quite sure the theory behind them.


I'm also wondering this! I'm clearly being treated with the bottom up methodology but if I do go on a biologic I think knowing the NHS finances they would put me back on something cheaper once in remission. I know someone who couldn't tolerate azathioprine so went on remicade, but then once in remission she could tolerate azathioprine again so she's been on that ever since.

My understanding is that in the states once you go on a biologic you stay on it unless you develop any problems? I'm sure I've seen that on a previous post.
06-23-2017, 08:25 AM   #8
Crispix73
 
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I'm also wondering this! I'm clearly being treated with the bottom up methodology but if I do go on a biologic I think knowing the NHS finances they would put me back on something cheaper once in remission. I know someone who couldn't tolerate azathioprine so went on remicade, but then once in remission she could tolerate azathioprine again so she's been on that ever since.

My understanding is that in the states once you go on a biologic you stay on it unless you develop any problems? I'm sure I've seen that on a previous post.
I am also being treated with the bottom up method, and it's not really working too well. My doctor kept assuring me that my case is mild, and that I wouldn't need any further drugs, but that doesn't seem to be the case. The lialda isn't working, and I just want to go back to the way I was before all this started. I think a biologic could definitely help me for the time being, but I'm not loving the idea of staying on one forever. I see people run through these meds and then end up with no options. The prospect of that is terrifying.

Today is just one of those days where I want to crawl into bed and not come out until someone finds a cure for the terrible disease lol.
06-23-2017, 09:51 AM   #9
Sophabulous
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I am also being treated with the bottom up method, and it's not really working too well. My doctor kept assuring me that my case is mild, and that I wouldn't need any further drugs, but that doesn't seem to be the case. The lialda isn't working, and I just want to go back to the way I was before all this started. I think a biologic could definitely help me for the time being, but I'm not loving the idea of staying on one forever. I see people run through these meds and then end up with no options. The prospect of that is terrifying.



Today is just one of those days where I want to crawl into bed and not come out until someone finds a cure for the terrible disease lol.


Trouble is they have to weigh up the potential risks of the drug and the side effects, against the risk of the disease activity. If it's a 'mild' case on paper they may not take into account how much you're suffering as the disease is unlikely to cause significant problems in its current state.

I think I'm similar in that I had severe activity when diagnosed and should really have been hospitalised according to my consultant. Problem is I'm very high functioning and was working 2 jobs because I don't have diarrhoea with my small bowel activity. I still felt bloody awful but more through fatigue and deficiencies.

So because on paper I was doing really well considering, they put me on Pentasa as a first maintenance treatment when actually with hindsight given where I am now, it probably would have been more beneficial to bring out the big guns of a biologic to calm things down immediately, and then withdraw that and go on a milder drug once in remission.

We've done it the wrong way around in my case for sure. I have a much better quality of life than many which I'm very grateful for, but I do worry that we haven't got this under control and that I'm going to develop complications later down the line which could have been prevented with a more aggressive treatment regimen.

I bet for every person like me, there are 20 more that respond fine to bottom up treatments in the first instance and thus make the method worth trying.

Frustrating but that's Crohn's for you!
06-23-2017, 09:52 AM   #10
ronroush7
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I am also being treated with the bottom up method, and it's not really working too well. My doctor kept assuring me that my case is mild, and that I wouldn't need any further drugs, but that doesn't seem to be the case. The lialda isn't working, and I just want to go back to the way I was before all this started. I think a biologic could definitely help me for the time being, but I'm not loving the idea of staying on one forever. I see people run through these meds and then end up with no options. The prospect of that is terrifying.

Today is just one of those days where I want to crawl into bed and not come out until someone finds a cure for the terrible disease lol.
I am wondering if you might need a second opinion.

06-23-2017, 10:59 AM   #11
Crispix73
 
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I am wondering if you might need a second opinion.
I thankfully have an appointment with a new GI tomorrow morning. She's the head of the IBD department at the local university hospital. I'm hoping I'll be getting things straightened out soon! Thanks
06-23-2017, 11:01 AM   #12
Scipio
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Even the docs who are big proponents of Top Down agree that Bottom up is still appropriate for very mild disease.

Unfortunately, many (most?) insurers are not on board with Top Down at all. They want docs to try the lower, cheaper drugs first before moving on the expensive big guns.

To answer the original question, my first and so far only Crohn's treatment was budesonide.
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