How much medicine is too much?

I can tell you now that you are going to be asked what rectal meds you are using...ie Rowasa enemas. .

the cipro w/o any infection is puzzling. maybe it is to see if it helps because there is a stealth infection.

increasing the biologic or switching makes sense. you might be able to drop the methotrexate if you respond to the biologic.

a lot depends on where you UC is and how severe. right now it sounds like you are in a race to avoid surgery. I would worry about stopping the flare now and consider effects of long-term meds later. Except for the pred, they are designed to be taken long term - and its not forever ... just till the next better med comes along.

you can also hope for sudden unexplained remission. it can happen. 10-20% of people in placebo groups always get better. it is not sure exactly why some flares go into remission.

good luck

Has there been any conversation of you transitioning to another biologic such as remicade?

jrreyes910 said...

Symptoms include: Lots of gas, Bloody stools and diarrhea with mucus. Roughly 4 -7 movements a day....and tbh I do not know if that is a concerning amount?

Yeah, the diarrhea is a problem if it's chronic, even if the other symptoms aren't that bad. Not to mention that your med load is not sustainable long term.

So it's not like you're stuck in a hospital bed, barely able to get up... that kind of sick. That's how I was when I was first diagnosed. Took me months to recover from that.

It is bizarre you aren't getting any rectal meds. Where are you located? What's available will vary based on where you live. The main rectal meds (suppositories, foams and enemas) are mesalamine, budesonide (relatively safe steroid), and hydrocortisone (steroid).

As others have mentioned, switching to another biologic probably makes sense since the Humira doesn't seem to be working.

Is your doc doing lab testing for liver and kidneys BTW? I would be asking for that.

It takes more medications to achieve a remission than to sustain a remission. So, what you're taking now isn't the long-term plan by any means. Once you achieve a remission you can likely reduce to just Humira to sustain your remission.

There's risks to uncontrolled inflammation over the long term, as well (increased CRC risks, among other things).

Pred is the biggest risk of them all.

Not everyone has accurate CRP readings. There's a small percentage who have no change in CRP despite actual inflammation. A colonoscopy is always more accurate. Often a Faecal Calprotectin (FCP) stool test will give you accurate numbers when a CRP will not.

I started taking B12 and folate recently and started to flare shortly thereafter. Not sure of a connection, but maybe discontinue the folate to see if it helps stop the bleeding?

When I was discharged from the hospital 10 years ago (my worst flare to date), I was discharged taking 39 pills per day. When hospitalized I was going 20+ times a day. My list included:

750mg Colazal 3 pills @ 3x per day
60mg Prednisone 1x per day
50mg 6 MP 1x per day
Calcium plus Vit D 2x per day
500mg Levaquin 2x per day
Omeprazole 40 mg 1x per day
Bentyl 20 mg 3x per day
Rectal Meds 2x per day (am & pm)
Lexapro 10 mg 1x per day
Ambien 1x day
and some other things I might be forgetting...

I did not remain on this amount of meds infinitely (see my signature for my current meds and btw the bentyl and omeprazole are only taken now on an as needed basis). When we are in a severe flare sometimes everything including the kitchen sink is thrown at us to get the flare under control. The goal is to achieve remission taking as few medications as possible. As I went into remission and tapered the prednisone, I was able to start eliminating some meds. The doctor may keep you on a biologic along with some type of immunosuppressive/colazal while in remission because the biologic alone may not sustain the remission.

For those questioning the prescribing of Cipro, this is not that unusual. I was on Levaquin (same class of drugs as Cipro) and the next year during my second worst flare I was on Cipro. My GI feels some patients with IBD respond to this class of drugs. Not sure if I did or not, but I trusted my GI.

I strongly recommend adding rectals to your regimen. In my case, I do not feel that oral meds appropriately treat my rectal inflammation.

You can't always rely on tests other than colonoscopy to give the most accurate info on your flare. I had a CT scan in the hospital that showed zero inflammation yet there was discussion of surgery to remove my colon.

It's a common occurrence for UC'ers to be heavily medicated upon diagnosis (especially if you're diagnosed during a flare) - It's a matter of GI's trying to correct your guts and keep you comfortable all in the same instance. Not everything works for everyone, so there's A LOT of trial and error which will usually boil down to you going through quite a few scripts.

After my first flare and hospital release, I was easily on 15 prescriptions. As I got better and felt better, I was able to slowly ditch script after script. It all pertains to your situation. I had to be on Valcyte and a heafty dose of antibiotics because of my CMV infection, also had to be on Prednisone despite the fact that I wasn't responding to it, I had to taper down as I was being pushed into a biologic pill. Up until last week, I was only on Bentyl (for my abdominal spasms), now I'm on Uceris to combat my tiny flare up symptoms, all while being on Entyvio.


It can be a mess at times. Just gotta figure out what works for you, what doesn't and what you can cut out.

I'm starting to get really anxious and nervous.

I just talked to my doctor today and she gave me the biopsies on my colonoscopy. She confirmed that there was inflammation starting from my rectum and going up about 30cm.

We talked about what to do next. Seems like I have 3 very real options.

1. Start a steroid enema
2. Drop the humira and start Entyivo
3. Surgery

I asked her about bumping up the humira dosage as we discussed, but she said that she feels uncomfortable putting me on more humira......along with the methotrexate and prednisone I have been taking for so long. As that could lead to more serious problems.

I recently posted that I was going about 4-6 times a day. I am going to change that to a solid 4 times a day..its been pretty consistent. Does that entail surgery?

I am going to get a second opinion before I do anything serious such as start entyvio or get surgery. My doctor also mention that most people that were diagnosed with UC at a younger age like me (age 16) end up getting surgery eventually anyway to because we are at a higher risk of colon cancer....is this true?

Also how bad are the enemas? I have only done one while preparing for a colonoscopy a while back as a way to clean me out. Are they successful? Are they bad?

Thanks

Thinking positively, if the enemas work do I still continue them or is that when I start tapering down on medication and eventually the enema as well??

Hi again,

So I have been on the hydrocortisone enemas for about a week along with all the other medication listed previously.

The enemas seem to been slowing the flare even more as I am going about 3 times a day with small yet formed stool. 1 out of 3 is bloody amd that is always the last one of the day before the next enema.

Sorry to ask again but does anyone know anything about hydrocortisone enemas? My doctor said that there is no absorption with these. I am looking online and there seems to be reason to believe there is absorption. That being said I have a rather embarrassimg question. Sorry to ask but my 21 year old mind is kinda going crazy at this point being in a flare for 10months.

When I take the enemas , a fair amount drips out on to my male parts. Could that absorb and cause serious complications? Apologies again if this is a bad question, just,worried.

So the enemas didn't really work. They helped the first bowel movement of the day, but the last 2 or 3 were not good.

Doctors are now putting me on entivyo. What is the percentage of people that respond positively to this medication?

11 months in a flare and going strong!