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Questions about Crohn's Disease
I am in my late 60's and was diagnosed with Crohn's Disease about 20 years ago. My severity has always been was referred to as "subclinical:. I have been taking Apriso for the fast few years to treat it, and have had colonoscopies every few years to monitor it. My most recent colonoscopy was in 2020. In the past, I never really had any severe symptoms, except the very occasional flareup (maybe once every other year if even that often). Those were treated with prednisone. About a year ago I had an abdominal MRI, which showed that I still had a "subclinical" case. Since then, however, I have been having occasional abdominal pain and cramping that would usually last overnight, but am usually fine by the next morning. I attributed that to "gas bloating", since simethecone would usually help make it go away. Also, my endocrinologist took me off of metformin because my A1-C numbers improved after getting on an exercise program and losing a significant amount of weight. Getting off that helped with the pain significantly, but I still do get it occasionally (although not as severe as before). I recently had a new MRI done and am now being told that I have acute chromic Crohn's disease with a 10cm segment of active bleeding inflamed ileum and fistulous connection to adjacent small bowel loops. I am now being told that I need to be on either Remicaid or Humira. I have no idea which one I should go for (if at all). My doctor tells me that I need to be treated with it in order to reduce the inflammation and allow the fistula or fistulas to heal He says he doesn't think surgery is an option. I am wondering if I should get a second opinion. Does anyone else have any insight or experience they might want to share with me?
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Howdy, sorry to hear that your disease has continued to progress. You should absolutely get a second opinion (make sure the next doctor can view your MRI and any other tests you have done), but from what you have posted so far, it seems you have a pretty typical case of IBD.
Basically if you do not treat it, the disease is likely to keep progressing and destroy more healthy tissue, at some point surgery will be the only option, but at your relatively advanced age might not be something you bounce back from. Also, feel free to browse this forum for people with "horror" stories from relatively "routine" bowel surgeries - I am one of them. Not that surgery should be discounted, but I feel that gastro's are a little too gungho about sending people under the knife.
If I were you I would ask for prednisone (~40mg-ish tapering down for like 2 months) to get the current flare under control, meanwhile starting on Remicade or Humira (these are essentially the same drug, do your research but Remicade you get an infusion every 8 weeks, Humira you inject yourself every 2 weeks) to maintain remission. These drugs are not perfect but they sure beat suffering unnecessarily. After about 6 months if your symptoms are not under control your doctor needs to evaluate whether the remicade/humira are doing their jobs (a couple of $100 blood tests, hope you saved up $$$), if not, it's time for prednisone + trying a new drug. Rinse and repeat until you get a few years of symptom free life. Good luck.
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3 ReactionsThanks so much for the response. Much appreciated!! Yes, I do indeed plan on getting a second opinion. The provider who called me about the MRI results is actually a P.A., but he told me the actual MD is onboard with his analysis. I don't want to start this kind of treatment with just a P.A.'s recommendation. He never mentioned prednisone at all, but maybe the fact that I have pre-diabetes may have been a factor in that.
My biggest concern is the Remicade or Humira. Is one more effective than the other? The infusion thing sounds like a hassle, but I could live with Humira injections every 2 weeks I think. The other thing is cost for these drugs...I know they are very expensive. The P.A. seemed to be pushing the Remicade (the office he works out of does have an infusion clinic attached, so he may be biased towards Remicade?). He told me that Medicare would probably cover most of the Remicade infusions through either Part A or Part B. Humira would be covered under the Part B drug coverage, but depending on my particular coverage there could be a significant copay. Also there are the published possible side effects from those two drugs that are kinda scary. Do you or anyone else have any insight into the side effects?
Again, thanks for the reply.
I've had Crohn's for over 40 yrs and one surgery for a bad flare that turned to appendixitis in 2016. I had no choice about surgery of couse but I was told that it was hard to find surgeons to opperate on us because our guts are very "fussy". Sure enough, my guts stopped moving afterwards in the hospital (paraletic illius) and took awhile to start up again. (I couldn't even drink water without throwing up.) But I had problems even after healing from the surgery because my small intestine had aptha- small blister-like ulcers. They did not heal until I talked my rheumatologist into supplying Low Dose Naltrexone in May of 2019. Now I can eat more ruffage than I could before (still not a high amount) and my last colonoscopy was "normal". The literature says thatover 80% of the Crohn's patients who try LDN get some benefit from it. I was never offer Humera so wasn't faced with that decision. So my advice- Yes, second opinions are always good idea. Avoid surgery if you can. Get the inflamation down (using pred, entacort, or biologics ) and try to find a doc who understands LDN. Look it up yourself first. There's lot more about it on the web than there used to be. For some of us, it really does help.
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2 ReactionsThank you for the information! I had not heard of LDN previously. I will definitely research it.
Remicade is one of the biologics with the longest/best track record for Crohns, so it seems to be often the first recommended ... that said, as you have seemed to uncover on your own, there is a lot of money involved which opens the door for conflicts of interest.
I do not know how paying for these drugs works if you are on various forms of government insurance. Be sure to research the manufacturer's copay assist plans, although maybe these specifically exclude Medicare if I recall.
As far as side-effects go, with prednisone you are pretty much guaranteed to get negative side-effects (but that drug may be off the table for you anyways, I would do more investigation into this because pred can be very helpful despite its negativity) vs with biologics there is a laundry list of things that happened to people while on the drug that the FDA seems obligated to include to cover their butts. Again, I am sorry to say but you may have a serious of "lesser of two evils" decisions coming up, nature of the game.
I would ask your insurance which drug they would cover because these medications are super expensive and when I started on medications for my Chohn's over 10 years ago there was a distinct path that insurance would pay for and so I started with Humira first. Humira didn't work for me so I am now on Stellara and doing so great. If Stellara wouldn't work then Remicade would be the next step for me since that one requires me going to an infusion center. Hope that helps!
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2 ReactionsThanks for the info! Much appreciated!