Please help with medication!

[Robertoceide12345]

Hiya. 18 year old diagnossed with crohns disease in November.

Colonoscopy done with 10 biopsy taken, shows signs of crohns when anaylysing.
Barium follow through taken few weeks later, results showed narrowing of the terminal ileum?

Currently on 2400mg of asacol in the morning and at night.

But medication isnt working i dont think, stool still loose with diarrhoea some days, no blood only small amount before colonoscopy due to piles i think. I was wondering, what were yous all started on or on currently? Do you think i should have been put on steroid medication?

Thank you all for the help, im just having a rough time of it at the moment.

 

[Zzz]

Asacol is a common drug to start treatment. It's one of the least intrusive of all the available medications. You should speak with your doctor about adding another medication. There are plenty of options other than a steroid.

 

[ronroush7]

Welcome. I was diagnosed 25 years ago. My current regiment of medication is Lialda, Stelara, Colestid , VSL3, Levsin (on an as needed basis) and synthroid (for my thyroid). I don't really have an answer whether you should be on steroids or not. I hope the best for you.

 

[Clash]

If you start with top down you have the choice of 3 anti tnf blockers then there are other biologics that aren't tnf that you can move to so basically 6 or 7 biologics.

Some GIs start biologics with an immune modulator like 6mp or imuran or methotrexate since the lessen the risk of your body creating antibodies to the biologic.

Other times an immune modulator is added if the biologic need help at controlling the CD. Also if a biologic isn't completely doing the job they'll adjust the dose or the schedule.

Lastly there are a number of new drugs in the pipeline so new drugs become available.

 

[Clash]

The med you have been pxed is a mild med for CD. Generally, the GI will px Pred(or another steroid) to quell the inflammation and start a maintenance med at the same time so that when you taper off the pred the maintenance med has had enough time to reach therapeutic levels.

Often the 5ASA meds, like you have been pxed aren't enough to control CD. These meds affect the top level of the bowel, whichransom they work great for UC, but with CD the inflammation, is transmural, meaning it affects all levels of the bowel.

If you are still experiencing symptoms then you need to relay that info to the GI or GI nurse and request blood work or fecal calprotectin to determine if the med you are on has lowered your inflammation level at all.

 

[Robrich]

"If you start with top down you have the choice of 3 anti tnf blockers then there are other biologics that aren't tnf that you can move to so basically 6 or 7 biologics."

That is not necessarily the case.
If you fail a tnf blocker other than for antibodies you will likely fail the other anti tnf blockers as well. And the disease can be harder to treat as it often gets stronger from overpowering the tnf blocker. I.e. The immune system learns how to defeat the anti tnf so it can do it's thing attacking the "invaders"
There is really just one biologic available that is not a tnf blocker and that is entyvio which really is not as good as the tnf blockers esp if you have failed the tnf blockers.
IMHO top down is indicated for severe disease and bottom up for milder cases.

 

[Lady Organic]

Hi Robert. I was started on same medication at my diagnosis. Unfortunately it was not enough. It worked but only for a couple of weeks. I then had to take steroids. That worked but it was not keeping me healthy after a course of steroids. I then was put on an immuno-suppressant.

Call your GI team to let them know of your symptoms and that you dont feel the medication is effective. good luck.

 

[Robrich]

Hi Lady O
So you went bottom up? 5asa drugs rarely work for Crohns but for milder cases it's worth a try?
Meanwhile you worked on your diet and still have the biologics in your Arsenal in case things go south on you.
Are you happy with how your treatment plan worked?

 

[my little penguin]

Top down is a valid approach for younger patients
The odds of surgery are 75% within 5 years of dx for younger patients .
They also tend to have more severe disease course than anyone dx as an adult
The disease starts as inflammatory and moves to stricturing or fistulizing within 10 years.
This does not happen with adults
The use of biologics early decreases the risk of surgery to 30-40%
Immunosuppressants and 5-Asa do not change the surgery risk .

So when you start having disease at an early age keeping as much intestine as healthy as long as possible is the goal
Saving meds for later till you have very little intestine left due to surgery is not commonly practiced with kids or young adults anymore .


Robert let your GI know things are not improving
You can feel close to normal with crohns
You just need the right meds

Fwiw Ds was dx at age 7
And started with Pentasa ( it did nothing )
And slowly worked his way up meds over the course of a year
Never feeling good or getting to remission
Yes his disease was mild to moderate but all his EIMs were not
Biologics were the only thing that worked

Anti tnf
Remicade
Humira
Cimzia

Non tnf
Simponi
Stelera
Entyvio


Good luck

 

[Maya142]

Simponi is an anti-TNF! My daughter is currently on Simponi.

Stelara is an IL 12 and 23 blocker.

No idea what Entyvio is.

In kids and young adults, the top down approach seems common. Our GI put my daughter on Remicade and MTX immediately and 8 months later, all the ulcers in her colon had healed and her colon looked "beautiful" according to the doctor who scoped. She still had mild inflammation in her TI and much better than before.

 

[Robrich]

So anyone diagnosed with cd under 20 should get biologics right away?

Stelara is not approved for Crohns I don't believe

 

[ronroush7]

Technically, I am taking Stelara for psorasis but it is also for Crohn's.

 

[Maya142]

So anyone diagnosed with cd under 20 should get biologics right away?

Stelara is not approved for Crohns I don't believe

Stelara will be approved within the next year according to our GI (for adults, not pediatrics of course).

Some kids do very well using the step up approach and others NEED the top down. With kids who are growing, there often isn't time to use the step up approach and try one thing after another - the risk that they won't grow and develop normally is too great. So according to our pediatric GI, doctors are beginning to use the top down approach more and more.

Of course, it depends on the case - every case is different!

 

[my little penguin]

http://www.medscape.org/viewarticle/560005_2

CAN THE TOP-DOWN APPROACH ALTER THE NATURAL HISTORY OF CROHN'S DISEASE?
The strongest argument for the top-down approach changing the natural history of Crohn's disease lies in findings from the endoscopic substudy of the Hommes trial.[26] Among the 44 patients evaluated after 2 years, there was a significant difference in the rate of complete mucosal healing (71% in the top-down group vs 30% in the step-up group; P < .05). This difference was marked, despite the fact that there was no difference in the clinical efficacy between the top-down and step-up approaches at this timepoint. Therefore, this leads one to believe that the early introduction of biologic therapy (ie, with TNF antagonists) has benefits at the end-organ level that far outreach the benefits of steroid sparing and overall clinical efficacy. This benefit of the early use of biologic therapy has been demonstrated in rheumatoid arthritis, where the early introduction of biologic therapy results in less joint damage on x-ray as compared with a typical therapeutic approach using disease-modifying agents, despite comparative clinical activity scores.[27]

This study comparing top-down vs step-up therapy also underscores the fact that a proportion of patients will have a good clinical outcome at 12 months irrespective of which treatment strategy/paradigm they receive. This means that there will be a significant proportion of patients with recent-onset Crohn's disease and moderate-to-severe disease activity who do not require early aggressive treatment with biologic therapy. However, it has been established that mucosal healing is associated with decreased rates of hospitalization and surgery,[24] and therefore the time may be approaching for clinicians to transcend traditional clinical outcomes and aim for mucosal healing: Therein lies the power of the top-down approach or of the early introduction of biologic therapy.

 

[my little penguin]

http://www.jgld.ro/2012/1/12.pdf
From Italy

 

[Clash]

If you start with top down you have the choice of 3 anti tnf blockers then there are other biologics that aren't tnf that you can move to so basically 6 or 7 biologics.

Some GIs start biologics with an immune modulator like 6mp or imuran or methotrexate since the lessen the risk of your body creating antibodies to the biologic.

Other times an immune modulator is added if the biologic need help at controlling the CD. Also if a biologic isn't completely doing the job they'll adjust the dose or the schedule.

Lastly there are a number of new drugs in the pipeline so new drugs become available.

The above response was actually to the thread below

http://www.crohnsforum.com/showthread.php?t=75362

As far as the tnf biologics there are studies that have shown the risk of surgery is diminished if pxed early in disease progression which is a treatment modality used often in dxes before age 24 (or possibly 22 can't remember exactly). If I can find the article/study again I'll post the link.

 

[Lady Organic]

Hi Lady O
So you went bottom up? 5asa drugs rarely work for Crohns but for milder cases it's worth a try?
Meanwhile you worked on your diet and still have the biologics in your Arsenal in case things go south on you.
Are you happy with how your treatment plan worked?

I was diagnosed as a young adult back in 2001 with moderate colonic disease when biologics were just on the eve of being put on the market. My GI was a IBD specialist and at the end of his career only saw IBD patients. he tried several attempts for me to reach remission with different 5-ASA and steroids and his hope and argument were that he had cases of people entering remission or spontaneous remissions on mild drugs or after a steroid course. so he was hoping and trying that for me too. With the years, I have known of IBD patients (some more severe than me) who truly entered spontaneous remission and who live meds free. So i still agree with the bottom-up approach for mild and moderate cases. However I feel there is a key element in the bottom-up approach to respect and it is the very close monitoring of the condition. This seems to be often lacking unfortunately.

My GI offered me an extraordinary monitoring. very careful and reactive in case of deterioration. When I read of testimonies of some patients here on the forum being put on whatever drugs with a fallow up appointment 6 months after initial diagnosis, it makes me so sad. Poor monitoring is definitely a key element in the rate of complications and surgeries imo. Letting go a new patient with a drug for too long (especially a mild drug such as 5-ASA) and fallow up in 6 month is really poor and risky practice. This seems to happen too often unfortunately. My GI fallowed me with rectoscopy *every* 3 weeks or month or 2 months depending on my condition. he was very careful not letting me going downhill or jeopardize my health, always hoping for a remission before putting on a heavier drug. after a year and a half battle going up and down disease and remission with steroids, we capitulated and I was put on a immuno-suppressor. I could have avoided a year of fight with crohn's being put on a strong med right away, true. But I prefer to have gotten this chance of reaching remission on milder drugs. Any decision we take, there is a risk. There is the risk of deterioration of condition with under-treatment and there is also the risk of drugs side effects which are increased with bigger drugs. We know of 15 years or so about biologics, but we have no idea of what impact they can have in the long run yet on global health. Now that biologics are on the market, probably my GI would have not tried a year and a half of mild drugs on me. Maybe the mild drugs trial would have been shorter and I would agree totally with that.

I then reached mucosal healing for 7 years on 6-mp until I decided to stop taking it, imitating 2 other IBD patients I knew in my personal life. (that was a bad call for me)

I diet now and if there is only one thing I regret from the past in my first 10 years as a IBD patient is not knowing and caring about diets and nutrition. I will never know if that could have helped me in anyway in my early years, but I am hoping it will help me for now and the future.:smile: