How much medicine is too much?

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jrreyes910
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Date Joined Feb 2018
Total Posts : 14
   Posted 3/18/2018 2:32 PM (GMT -6)   
I was diagnosed with UC about 5 years ago and am currently in my first horrible flare. This flare has lasted 8 months and doesn't really seem to be getting better. It seems as though every month I am prescribed new medication and going through this trial and error type of process.

I am currently on 9 capsules a day of 750mg colazale, 10mg prednisone, 25mg methotrexate, folic acid, 40mg of humira weekly, Prilosec, and the newest addition is 2 pills of Cipro 500mg each daily.

I am a 21 year old male and I am concerned what these long term medications will do to me in the future. At the moment I am having anywhere from 4 to 7 bowel movements a day. Half of them are formed or partially formed while the other half are just mucus. All contain blood.

After talking to my doctor it seems like the final ideas she has to get me into remission are increasing the humira to 80mg weekly, and/or starting entivyo. If these don't help I am left with surgery.

How bad is it to take all this medication? Also, thinking positively for a moment, can I spontaneously reach remission or is this a gradual thing?

I also want to add that I have taken many stool tests over these 8months. There is no sign of infection. However the one thing that is unclear is that my calprotecin levels are normal......and this test shows signs of inflammation correct? So what is causing this flare?
Thanks

Post Edited (jrreyes910) : 3/18/2018 2:35:33 PM (GMT-6)


countess18
Regular Member


Date Joined May 2016
Total Posts : 232
   Posted 3/18/2018 4:27 PM (GMT -6)   
I can tell you now that you are going to be asked what rectal meds you are using...ie Rowasa enemas. .
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 3/18/2018 5:35 PM (GMT -6)   
Do you have ulcerative pancolitis or left sided? How long have you been taking each of those meds?

Obviously your doc is trying to find something to get you into remission. What are your symptoms like?

Post Edited (C_G_K) : 3/18/2018 5:43:20 PM (GMT-6)


DBwithUC
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Date Joined Feb 2011
Total Posts : 4105
   Posted 3/18/2018 6:48 PM (GMT -6)   
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
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 3/18/2018 7:37 PM (GMT -6)   
I am not taking an rectal medication, no enemas or anything like that. The UC is only left sided I believe and there is no inflammation anywhere else.

I have been on prednisone at varying doses for 8months straight. Started humira about 5 months ago. Methotrexate was started last month. I have been on colazale since diagnoses. Cipro I started earlier this week.

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? Very mild stomach pain on occasion so I guess that is a positive thing?

Thank you guys for the responses!

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 74
   Posted 3/18/2018 7:44 PM (GMT -6)   
Has there been any conversation of you transitioning to another biologic such as remicade?
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

marcell
Regular Member


Date Joined Mar 2018
Total Posts : 128
   Posted 3/18/2018 8:13 PM (GMT -6)   
I saw a girl that stoppped eating for a week. It was dangerous, but her situation was quite bad. After losing 12 kg, she ate again and had no more flares since then. I think there are many ways to fight this thing. But if you are having really bad crysis and it's not getting better, then keep taking the meds. But remember that controlling your stress/anxiety can be extremely important and could help you get better. So take you s&*┬Ęts as well as you can and don't think about the disease not even for a second. And relax, don't be stressed and try to get free of anxiety (that's the hardest thing you'll have to do). Then let's see if you have any results.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 3/18/2018 9:08 PM (GMT -6)   
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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16284
   Posted 3/19/2018 9:07 AM (GMT -6)   
If you're still going 4-7x a day and having symptoms, I don't think adding is the answer, it sounds like the answer might be changing courses. At a certain point, with you being young, and having so much life ahead, I have to hope you can find a solution that lasts for the long-term. I will tell you, the doctors will keep giving you drugs, at higher and higher doses, until your body shuts down. So you're smart to ask if it's too much.. I ended up killing my immune system with all the drugs, mtx + pred + double dose remicade, and ended up with septic shock fighting for my life. Have you done stool tests?

I stopped eating for a week and it didn't do anything for me regarding my UC.

8 months on pred is a long time. That's really the drug with the worst longterm consequences. The others all have their potential side effects, some deadly, but those are rare. Pred, if you take it longterm, there will be consequences.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 3/19/2018 12:07 PM (GMT -6)   
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.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

"Don't make me angry. You won't like me when I'm angry." - Your colon

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 3/26/2018 2:31 PM (GMT -6)   
Hi everyone,

Since i posted this thread i have started ciproflaxin and am still trying a gluten free diet.

To sum up the medications i am taking include:

750mg Colazale 9x a day
10mg Prednisone
40mg Humira
25mg Methotrexate
Folic Acid
500mg Ciproflaxin 2x a day
prilosec

I have been in a flare for 8 and a half months and have been on prednisone at varying doses for that long. Never missed a day.

Before i said i was going 4-7 times a day with blood and mucus and diarrhea.

Now i am going about 4-5 times a day with blood and mucus and formed stool.

I am not sure if its the medication causing this or if its my far less eating due to the gluten free diet.

I take my medication in the morning when i wake up. And i find that i do not have to go throughout the day. I have to go 2-3 times in the morning immedietly when i wake up. And then i will go 1-2 times at night. It very odd.

Comments are appreciated thank you!

tiredofallthispoop
Regular Member


Date Joined Jan 2017
Total Posts : 95
   Posted 3/27/2018 11:38 AM (GMT -6)   
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?
F, 54, UC
Symptoms started January 2016, diagnosis July 2016 after colonoscopy
Balsalazide July 2016 - January 2017, Lialda 1 dose March 2017, no more mesalamines for me!
Predisone Sept-Nov 2016, Dec-Jan 2017, March 2017 - present, currently at 30mg and still flaring :-(
2nd colonoscopy August 2017, confirms left sided UC, cannot tolerate azathioprine, started Remicade started Feb 2018

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1043
   Posted 3/27/2018 1:29 PM (GMT -6)   
jrreyes910 said...
Hi everyone,

Since i posted this thread i have started ciproflaxin


Why?

RockerGirl
Regular Member


Date Joined Sep 2013
Total Posts : 358
   Posted 3/27/2018 1:57 PM (GMT -6)   
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.
-2005 dx UC proctitis, 2006 dx pancolitis, pathology reports on occasion have suggested crohn's colitis
-2018 dx Fibromyalgia
-Current Meds: Colazal, Canasa, Cymbalta, Bentyl & Omeprazole

-Past Meds during UC flares: Lialda, Asacol, Prednisone, 6-MP, Cortifoam, Levaquin, Cipro, methylprednisolone, Uceris, Lexapro

-Supplements: Probiotics, Citracal, Magnesium Malate, Omega 3's, Tumeric, COQ10

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 4/16/2018 3:13 PM (GMT -6)   
Taking same medication, same gluten free / dairy free diet.

Going to the bathroom 4 to 6 times a day.

Officially 9months in a flare and on prednisone.

I would guess i lost about 8 pounds over the last 9 months.

Last week i got a colonoscopy and endoscopy.

My inflammation is about 30cm starting from the rectum and moving upward.

What medication is used for this?

Thanks guys

IntestinalWasps
Regular Member


Date Joined Mar 2018
Total Posts : 158
   Posted 4/16/2018 4:35 PM (GMT -6)   
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.
27 years old - Female
Diagnosed - December 2017/Ulcerative Pancolitis (Spent December-February in the hospital)
Treatments:
Remicade (severe liver damage, stopped treatment immediately)
Prednisone (caused severe weight gain as well as swollen feet and legs, become non-responsive)
Valcyte (to kill my CMV infection)
Tacrolimus (bridging biologic medication)
Entyvio (currently on dose #3)

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 4/17/2018 6:23 AM (GMT -6)   
before you had said if the scope was bad they'd talk about going from 40mgs to 80mgs weekly on the Humira or switch you to entyvio. Any further discussion or decision regarding those options?
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

But you don't look sick... Trust me, if I looked like I feel, then everyone would run out of here, scared within an inch of life...

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 4/17/2018 4:20 PM (GMT -6)   
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

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8334
   Posted 4/17/2018 5:28 PM (GMT -6)   
enemas tend to be our best friends - or at least a very good friend to our anuses - try the enemas now - don't do anything else -

give them a couple of weeks before doing anything else (hopefully things will get much better in less than 2 weeks)
dx'd with pancolitis 12/21/03
current supplements:vit D, vit K2, cal/mag - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 4/17/2018 5:36 PM (GMT -6)   
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??

IntestinalWasps
Regular Member


Date Joined Mar 2018
Total Posts : 158
   Posted 4/18/2018 1:16 PM (GMT -6)   
The enemas aren't bad. They're not the typical enema you'd use to prep for a 'scope. It's just a small amount of fluid you squeeze up there and either sleep with it up there or hold it and lay on your left side for 30 minutes, and go push it out. No biggie.

The prep enemas I did while in the hospital REALLY hurt me. Even though it was just cold water, it felt so awful on my ulcerations that I felt like I was going to faint. I was only about to do one (as opposed to the two) and it took about two hours. -_-
27 years old - Female
Diagnosed - December 2017/Ulcerative Pancolitis (Spent December-February in the hospital)
Treatments:
Remicade (severe liver damage, stopped treatment immediately)
Prednisone (caused severe weight gain as well as swollen feet and legs, become non-responsive)
Valcyte (to kill my CMV infection)
Tacrolimus (bridging biologic medication)
Entyvio (currently on dose #3)

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 5/13/2018 9:10 PM (GMT -6)   
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.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 5/14/2018 5:14 AM (GMT -6)   
Some improvement at least and hopefully more to come!

Anything taken rectally has about a 10% absorption rate, due to the colon tissue having lots of small capillaries near the surface, which readily transfer meds into the blood stream. Rectal steroids are like taking 10mgs or less a day of prednisone and therefore can cause the very mildest of pred symptoms.

If any medication drips out during administration, just wipe it off with tp or a wet washcloth and you'll be fine. Nothing to worry about.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

There are two certainties in life: paying taxes and prednisone side effects...

jrreyes910
New Member


Date Joined Feb 2018
Total Posts : 14
   Posted 6/13/2018 12:02 PM (GMT -6)   
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!

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4105
   Posted 6/13/2018 12:27 PM (GMT -6)   
Like most biologics Entyevo helps about half (40 to 60 percent) of people. But the rate for people who have failed another biologic is lower. I would have to look up, but maybe as low as 30%

With left-side only and only 4'ish bm a day, surgery is not an immediate consideration. There are other biologics, and there are also mesalamine enemas. Unless there are pre-cancerous cells, or 20+ bm a day, or so much D and bleeding that you are anemic and cannot stay hydrated ... then you body is not forcing you into surgery.

Even if things get really bad, you can be hospitalized and given IV steroids as a last-ditch rescue effort.

I am not sure I ever got clear on why you GI thought you needed antibiotics? Was there some concern about infection of diverticulitis or something?
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C
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