What determines Dr prescribing biologic?

[darubo]

I had my last bowel obstruction in May of this year; one of the worst I've ever had; had NG tube & was in the hospital 4 days. I've had a total of 10-12 episodes like this with varying degrees of severity since 2009. I had a bowel resection & hernia repair in 2012 (camera capsule got stuck; pics showed blisters & stricture @ terminal Ileum) & have been taking Entocort since.
I had a colonoscopy in July 2013 & Dr @ that time said everything looked normal so she couldn't justify prescribing a biologic.
I kept having periodic attacks & felt like I was dying each time.
I had to change Dr 's because of insurance, so saw this Dr after May attack & she asked why I wasn't on a biologic, especially since my body seems to make strictures?
So she's requiring me to have a CT enterography Nov 15 & depending on results will probably put me on biologic.
The Entocort Isn't working; I have constant pain all across abdomen right below navel. It feels like the worst gas I've ever had & can't pass it, but I am passing gas & having bowel movements; but the pain stays the same. I've got to have some relief! I'm also very anemic despite 7 infusions of Venofer, & I feel horrible all the time.
Dr says pain symptoms sound like stricture.
She hasn't said she will definitely put me on biologic after CT,so I'm wondering how your Dr put you on a biologic?

Thanks for sharing your stories with me.

Dana B
Lufkin, TX

 

[Jabee]

Hi Dana.

Sorry you're having such a hard time. It's terrible to live with such severe pain all the time. I've been on Entocort for a few years now, but last March I was hospitalized again with inflammation in areas of my small bowel that were different from my previous hospitalization in 2013. I was put on IV steroids in the hospital and once home I continued with a prednisone taper. My GI discontinued Entocort since it hadn't prevented my flare and put me on an immunosuppressant, 6MP. The 6MP gave me pancreatitis (it does with some people). I can't take the mesalamine drugs because I also have hypogammaglobulinemia (which is quite common and not serious, nothing I treat or anything, just means I have low levels of certain antibodies). The next step for me is the biologics, but before we do that I'm giving Entocort one more chance. I did develop narrowing and adhesions of my terminal ileum between a pill cam in July and October (was in the hospital for severe pain so I had a CT scan where it showed up), so I may have to switch to Humira sooner rather than later. My doctor has wanted to hold off on the biologics for as long as possible.

Sorry for the long-winded reply; some doctors and most insurance companies want patients to try cheaper medications like the mesalamines and steroids first, then move to immunosuppressants and finally biologics. But if you have stricturing Crohn's disease then a biologic would have more effect. Since this doctor already wondered why you weren't on a biologic it sounds like that's what is next for you. An MRE will confirm the strictures and give your doctor good information for any insurance questions.

Best of luck with the MRE. Is your doctor giving you anything for the pain?

 

[Clash]

It can depend on whether the GI you see follows the top down approach or bottom up approach to treatment. Many GIs now follow the top down (starting with the big guns- biologics) because studies have shown that it can lessen the risk of surgery down the road. Also, if the patient has stricturing or fistulizing CD.

My son was dxed at age 15 and was put on remicade right after dx. The GI felt that due to the severity of inflammation the his ileocecal valve it was best to go straight to the big guns in an effort to get the inflammation under control.

 

[EmmaLou]

Hi!

I was diagnosed in April after being admitted from my first clinic appointment. I saw my GI about a month later after being on a weaning dose of pred. He looked at my colonoscopy report and, after telling him that I couldn't get below 30mg of pred without having serious problems, and me nearly kicking him in the gonads when he pressed in the area of my abdomen around the TI area, he asked me to read up on Humira and Remicade and decide before seeing an IBD nurse in clinic.

Since then I've had surgery to remove the TI and am now on Entocort as well as Humira (likely to be changed).

At my last appointment I asked him why he skipped straight to the biologics, and he said my presentation was so severe that it would have made no sense to go through the other medication when he was fairly sure that the damage was too advanced for them to work. As it turned out it was too advanced for even a biologic to help and I ended up in emergency surgery in August, about two weeks after starting the Humira. The plan, when this flare is under control, is to work backwards to maintenance drugs and off the biologics.

Having read other people's experiences it seems that it depends on the severity of the condition and the individual GIs' preferences.

 

[darubo]

I was taking Librax for the pain but it wasn't helping much; now that I'm on Medicare I discovered Librax isn't a covered drug; costs $500/month.
Was going to try hyosciamine; it's covered but about $30/month; can't afford with all my other prescriptions...so I'm just suffering with the pain, and I feel like I can't take much more...I thought about asking doctor about a short course of prednisone but wonder if that would interfere with what she's expecting to see on the CT enterography?
I had a CT enterography in 2012 when Dr 's were trying to figure out what was wrong with me; it did not show any thickening of the small bowel lining, and I feel that the one I have on the 15th will not show any abnormalities either; every single test they did came back normal; that's why they had me swallow the camera capsule; it was a last resort.
Thank you for your response.
Dana

 

[Layla]

I was in a similar situation as you are a few years ago; years of suffering obstructions and a few ER visits. The last one turned into a 5 day hospital stay with loads of hydrocortisone and and ng tube and I was lucky that things started moving again rather than have emergency surgery.
I was misdiagnosed until that time with Ulcerative colitis and not on any medication.
The hospital incident was enough to qualify for surgery and biologics and an "upgrade" to CD
I had the surgery a few months after when it became clear the strictures weren't going to subside and were probably scar tissue and went on Humira soon after to prevent any more from forming after trying MTX and Azathioprine which both failed me.

So I'm really quite surprised you aren't yet on biologics or at least something stronger than Entocort. The way it was explained to me was that with stricturing disease you need to prevent more strictures forming and the entocort is obviously not cutting it in your case.

And with all the pain you're having I would expect to skip the MTX and AZA as they're less likely to induce remission (they're better for keeping you in remission, not so much inducing it in rampant disease) and AZA especially takes a fair while to become effective.

As for pain, have you tried Tramadol? I've no idea if that's a better price but it may be so worth asking.

I also went on a liquid diet in the months leading up to the resection, things like pureed soup, hot (soy) chocolate, bone broths etc. I'm lactose intolerant so can't eat yogurt but that would be very good too. The liquid diet made me last until the resection and I can really recommend it.

Good luck and keep us informed!

 

[darubo]

LAYLA
Right after the bowel resection in Oct 2012 the gastro Dr put me on azathioprine (before the Entocort) & I had a SEVERE allergic reaction to it; it felt like the flu multiplied by 100; my whole body hurt & I couldn't stop vomiting. I could hardly stand up; I've never felt so horrible. They were still giving it to me every day in the hospital & couldn't figure out why I wasn't improving after 4 days. A medical student suggested I might be having an allergic reaction to the azathioprine (thank God I was in a teaching hospital) so they stopped giving it to me & I started feeling much better in less than 24 hours. I really thought I was dying; I felt that bad. Thank God for that medical student!

I plan on telling the Dr I've GOT to have some relief from this constant pain...I am praying she will put me on a biologic, regardless of the results of the CT enterography on the 15th, & I'm feeling very scared about being able to drink the contrast without throwing it up...all I can do is try my best...I've got to have some relief; I can't stand feeling this way any more...I feel exhausted every day from anemia caused by the Crohn 's...it's really so very debilitating...thanks for your feedback.

Dana

 

[aypues]

Hi Dana, see if the doctor will give you some Levsin for the pain. There's also Belladonna alkoloids, which are stronger and have phenobarbitol too. If it's really bad I used to take half a Percocet in addition since the tylenol wasn't cutting it. As soon as I got taken off Humira and Entocort and onto Remicade and Cellcept I went into remission immediately. Also started a short course of Prednisone 40mg a few weeks prior to starting Remicade and Cellcept, eventually tapering off the Pred. Remicade is the most effective of the anti-TNF biologics, but it is more expensive since it needs to be given at an infusion center and requires monitoring. Here is the new study:
https://www.ncbi.nlm.nih.gov/m/pubmed/27058635/