Treatment when newly diagnosed

Hello. I was diagnosed 3 years ago but have always wondered if I was rushed into biologics or not. I would love any opinions or advice based on your experience. I realize everyone situation is different. I will say that right now my left sided colitis is well controlled so I’m very fortunate and grateful. I just have doubts about my current gastroenterologist but am also afraid to switch to another. Here’s my story and I thank you very much in advance for listening.

I began having a lot of bloody diarrhea in January 2020, age 61. My primary care doctor did blood test and regular abdominal X-ray. All fine. Went to a gastroenterologist who had the WORST bedside manner I’ve ever encountered. But it was the beginning of Covid lockdown where I live (CT in the US) and he did specialize in IBD (my mom had had colitis so I thought that might be causing my symptoms). As an aside (which I found out later on) this doctor heads up his practice’s infusion center and has received a lot of money for speaking on behalf of pharmaceutical companies for years. I have always wondered if this influences his recommendations. On the positive side his practice accepts all insurances including Medicare and Medicaid which many here don’t so that would support the idea that profit is Not the priority for them. I will be on Medicare next year (a whole other stress!).

Anyway he did stool test to rule out infection including c-diff. Then a colonoscopy which diagnosed “moderately active left sided colitis”. No ulcers if I remember correctly but “a lot of inflammation” (his words).

I assumed he’d prescribe Mesalamine and prednisone to get things in remission and then if all went well, Mesalamine would be my maintenance drug.

Instead he wanted me to take just uceris to start and I do understand that it is seen as having less systemic side effects. I nei understand issues with frequent or long term use of prednisone. My insurance company would not approve the expensive uceris without first trying the cheaper prednisone. By now it was the end of February so I’m having a lot of symptoms without any treatment! Finally he prescribed just 6 days of prednisone, 30mg tapering each day (seemed very minimal to me but..) and still no Mesalamine. I go to pick up the prescription and the gives me it plus 30 days of uceris “pending approval” (which never came from the insurance).

The doctor said hold off on the prednisone and try the uceris. I did and it did not help at all.

So another month without improvement. He then said take the 6 days of prednisone and added Mesalamine 4.8mg a day and the prednisone works the very first day! I was so happy but after I taper off, the symptoms reappear and start to become severe (12 bm a day, all blood in toilet, and my heart rate goes over 100). At this point I had only one week of Mesalamine and steroids for very moderate symptoms and inflammation so was that enough to say it wasn’t working? Or if I had more time on steroid so Mesalamine had time to kick in, would I have avoided biologics?? This is what mags at my mind.

Now he prescribes more prednisone (21 days, 40 mg for 6 days and then tapering every 3 days) and I was still taking the Mesalamine. Again first day of steroids and huge improvement.

He now says that fact that I had symptoms reappear after the first 6 days of steroids meant my colitis was “steroid dependent” and I needed to start remicade. My first infusion was 3 days after restarting prednisone and all went very well after that. Another colonoscopy 6 months later showed no inflammation at all. The following year I started having infusion reactions so he increased dose to 10mg and added weekly low dose methotrexate plus they give me 40mg solumedrol before starting my infusions.

I know I’m lucky right now that it’s working but I don’t feel certain I needed this level of med.

Or do you think since I was diagnosed at a moderate level vs a mild level, I needed the biologics and he only did the “minimal” steroids and Mesalamine to get my insurance to approve the remicade (they won’t until you “fail” a couple of “traditional” medications first. I’m now on Inflectra as insurance won’t pay for remicade any longer but it’s the same thing.

His bedside manner has improved some but I’m still afraid to ask too many questions or he gets testy. His infusion nurses are wonderful!! I’m reluctant to leave them.

thanks very much for any input.

Dear GrittyHope, thank you very much for the quick reply and that’s good to know…perhaps that is what he was thinking. I wish I wasn’t so reluctant to ask him and I especially wish I had asked more early on. I do have a shy personality and he has a very aggressive personality. But his nurses are always kind. And to switch seems daunting. Thanks for your input; I feel better. Happy to hear from anyone else too.

Make a list of questions to ask your doc and take it with you when you see him and don't be afraid to ask. If gives you a hard time or you still feel uncomfortable, find another doc. This is a lifetime disease and you should be able to view your doctor as a partner not someone you are afraid of.

Whether you were rushed to biologics too quickly is water under the bridge now. You are doing well on inflectra so stay with it unless you have other side effects from it. For what it's worth, your treatment when you were first diagnosed seems odd to me, too.

Do you currently get your insurance through your employer? If so, and the policy meets certain qualifications you may be able to skip medicare as long as you continue to work. That way you can keep the inflectra co-pay assistance. As soon as you go on medicare that will stop so you will need to make sure you have good supplemental policies to cover what medicare doesn't. I am in the same boat -- I turn 65 in Jan 2024 so I am researching options.

Hi...welcome to the forum.
Firstly, I suggest you get a copy of the pathology results to know exactly where the location extent of your UC is. Left-sided to me means including the descending colon, but not to everyone.

I take it you haven't been on any rectal meds...I suggest mesalamine 4g enemas.

I've never been on biologics or steroids, except steroid foam enemas for 2 weeks once.

When is your next appt? And definitely make a list of questions to ask your GI.

q

Thank you, Quincy! I will ask for that info. I was told it went to the splenic flexure. I was never given rectal meds. My next appointment is March 1. Same day as my next infusion, I have those every 8 weeks.

Dear FlowersGal, thank you very much for this information! I feel less worried now. I didn’t know about the other options.