Still here, ambling along...seeing GI soon again, tired of entocort

Hi thatgirlmarie. I don't post often but your story reminds me of my own. I became "Entocort-dependent", meaning everytime I went off, my abdominal pain, diarrhea (my #1 symptoms, awful!) would return. My crohns was always considered "mild to moderate". My last colonoscopy in November showed extensive thickening of the terminal iliem and my GI decided to move to the biologics. I always thought that these were for way more serious cases, but in my case, I cannot take Entocort forever, Pentasa is clearly not working, and my GI felt that at this point a biologic is needed to get off of steroid and prevent complications like blockages and fistulas...these are situations that could make my quality of life pretty challenging. I have been on Entocort since November 2015; I have not gained any weight but I can empathaize with you as I once was on Prednisone and gained a ridiculous amount of weight;this was not a fun experience. In fact I've lost 20 pounds and continue to lose weight. My main Entocort side effect is "roid rage". Not sure which side effect I'd prefer honestly!

Anyway, At 38 years old (female), no plans for kids, I decided that biologics were the best next choice. I want to continue to remain active; I am athlethic and involved in boot camp and many fitness classes. This is my favorite thing to do and the thought of not being able to do these things would really depress me.

So the first drug we chose was 6mp but I failed the liver enzyme test to break it down. So next, we selected Humira. It took a while for insurance approval/nurse coordination and I just had my first loading dose on 3/19. So far so good. I am currently tapering down to 3mg/day of Enotocort and plan to be totally off in a few weeks. I will also nix the Pentasa once I finish this months pills.

With the above changes, along with a very clean diet with little to no processed food, I feel hopefull that I can have many years of low-symptoms and no complications. It has been very difficult to make this step to a biologic but after doing a lot of research, the benefits outweigh the risks in my case.

I guess I just wanted to bring my current situation up as I would hate for you to feel like nothing can be done. It is hard when there is no cure and the drugs out there come each with their own side effects that must be individually considered.

I pray for you that you will get the medical care that you need and that you can find an option that best fits you.

Why do docs prescribe Entocort for so called mild crohns?
It's a steroid and comes with a lot of side effects, right?
I just don't understand.
I guess I was mild when I was a kid too, even though I felt like I was dying for months.
And my GI prescribed me Asacol and it was amazing how better it made me feel in just a short few days!
Too bad I was an idiot that stopped taking it...because I felt so great at that time, btw!
I have a cousin in law who had an experience much more like yours.
Mild Crohn's, prescription of entocort, and lots of side effects that made her hate her life.
For her, the cure was definitely worse than the disease.
She stopped going to the doctor, stopped entocort, and began managing her health using cannabis.
No matter how much I've warned her about my story and the dangers of being med free, she's ignoring my advice. Primarily because she's been able to manage without meds and she wanted to have children without fear of the meds hurting them.
This disease progresses inside us and does terrible damage, oftentimes without us even feeling that bad (like myself) and thus needs proper meds, not steroids, to manage the inflammation.
I hope that one day my cousin in law won't be telling people on this forum that she wishes she had taken her meds and not gotten worse with fistulas like I did.

gypsyfp I think it's because my case is currently barely even presenting as Crohn's even though they did give me an "official" diagnosis on paper. Prescribing Entocort was almost a diagnostic tool, I think.

My colonoscopy was clear with the exception of mild inflammation at the ileum and none of my blood work screamed any sort of problem, and my symptoms, although crappy (no pun intended) don't seem so serious. I mean, serious urgency and bowel incontinence twice, never blood, no abdominal pain unless it was an urgent bowel movement...so I think for most GI docs, it would seem pretty mild (and compared to the near-death issues my brother has had with his Crohns, it certainly is mild as well). So comparatively, sure it is. With the colonoscopy and the MRE, both doctors said the inflammation was so mild they weren't really concerned, as though it wasn't significant enough to make much a difference except that I had these other urgency/frequency issues.

That's not to say I think it's not a problem or that it'll always be mild, but I worry much like others have mentioned that it's either virtually useless drugs or strong immunosuppressants and a doc won't want to make that jump for how I am currently presenting.

For me, the side effects are definitely not worse than the symptoms I was having, but they're not fun either. Gaining almost 20 lbs since I started them has left me completely deflated, and at 9mg a day I was having similar ragey-ness that crohnewbie described, which is part of why he had me go down to 6mg/day on top of the insomnia.

Crohn's is covered under the ADA right? I wonder if I should go to my universities student services because my exhaustion and inability to focus is starting to effect my ability to keep up with my course work and honestly, this is the worst side effect because I am a 4.0 student hoping to go to grad school :(

NiceCupOfTea said...

thatgirlmarie said...
I've been on the Entocort since mid to late October I think?

That's 5 months. Deffo time to start tapering off it: you shouldn't take Entocort for longer than 6 months.

thatgirlmarie said...
If Mesalezines are pretty much useless in treating Crohn's, why do they bother with them? Every post I've seen here is people saying they just don't work. Are they oral medications? I should research them more probably.

Two possible reasons why GIs still prescribe mesalazines:

1) They don't keep up with research, and so may not be aware of more recent research which shows that mesalazine isn't more effective than placebo for Crohn's in most studies.

2) Lack of acceptable alternatives for mild disease. The immunesuppressants and biologics require regular blood tests and can have rare but serious side-effects - the risk of developing pancreatitis is 5% for azathioprine or 6MP.

So docs prescribe them because they are safe, cheap (in generic form at least), and may help (because it's hard to conclusively prove that they have no effect whatsoever). Also, mesalazine comes in both oral and rectal forms - so for proctitis (rectal inflammation), rectal mesalazine is bound to be prescribed.

Thanks NCOT - this is helpful. I will arm myself with a list of questions about his game plan for when I see him.

My disease started out exactly like yours. Just some mild inflammation in the ileum. That eventually ate away a nice ulcer in the ileum that caused me a massive bleed. But even after that they considered my disease to be quite mild. I started on Asacol, and did rounds of steroids for several years. I wish I would have made the jump in meds much sooner because over a few years it quickly spread to my entire colon and got quite severe. I was one of the unlucky people that got pancreatitis from the azathiorprine however, so that wasn't fun. I do okay on Methotrexate. I've had a hard time getting the biologics to work because things got advanced. I often wonder had I made the jump much sooner if I would have had some better results. Don't make my mistake and let it smolder in there, keep an eye out and find something to help control it better then just the steroids. I've been on them way too much, I'm 38 and I already have bone loss in addition to all the other fun side effects you were mentioning!