Difference between UC symptoms and steroid withdrawal?

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Spring
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Date Joined Jan 2017
Total Posts : 344
   Posted 6/9/2018 12:46 PM (GMT -6)   
How do you tell the difference between UC symptoms and steroid withdrawals? I am at 6.25mg. I have had a lot of stress the last three weeks due to a child breaking their arm, and two funerals of family members. Thursday after the last funeral I took a one time 5 mg dose due to how stressful the day was. At 7.25 mg I was having quite a few days only going 4 times, and urgency was a lot better. The last 4 or 5 days, however, I have had an increase of bms, much more diareah, and yesterday accident due to urgency. I feel horrible today. Nauseous, body in pain, no appetite, ect. I am 10 days away from my next Entyvio infusion, so that could be a factor as well. Since some of the symptoms match UC and withdrawal, how does one know if they are tapering too fast?
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

notsosicklygirl
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Date Joined Dec 2008
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   Posted 6/9/2018 1:23 PM (GMT -6)   
I am sorry you're stressed. I think the best thing you can do for yourself, is firstly, get a stool test to check for pathogens. It is possible you have something else going on, body aches, D, accident, could be C diff.... Also get a calprotectin while you get that. The result can give you ideas about how things are going. Stay calm and get your next infusion, that may be the sole reason things are a little whacky, but I'd hold steady on the steroids and taper SLOW. Do you have 1mg pills for when you get under 5? If you need to, you can always move the doses closer together in the future.
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

Spring
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Date Joined Jan 2017
Total Posts : 344
   Posted 6/9/2018 2:53 PM (GMT -6)   
I do have 1 mg. Once I am at 5 mg, I was supposed to do 1 mg drops instead of 2.5 mg drops. I have not felt this bad since probably December. I am hoping it's the Entyvio needing to be moved closer.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

iPoop
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   Posted 6/9/2018 8:27 PM (GMT -6)   
Steroid withdrawal is strictly fatigue and body aches/ pains. What you're describing is a return of flare symptoms (or a cdiff). You might be tapering too fast and need to give entyvio more time.

How long have you been on entyvio? How many weeks?
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

My reviews on Yelp and Trip Adviser will be terrible: @$10,000 a night with uncomfortable beds and awful food, but at least the drugs are good at this hospital.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/9/2018 10:32 PM (GMT -6)   
I started January 12, and in 10 days when I have my next infusion it will be me second maintenance dose. I have osteoperosis in my spine now, so we are trying to get me off of Pred. I thought it was probably flare, so thanks for the confirmation, ipoop
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

DBwithUC
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Date Joined Feb 2011
Total Posts : 4104
   Posted 6/10/2018 8:17 AM (GMT -6)   
ipoop is right on. steroid withdrawal does not cause D. It lets suppressed D reassert.

Your other meds did not sufficiently control your IBD, and when coming off steroids, that became apparent.

quincy
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Date Joined May 2003
Total Posts : 30587
   Posted 6/10/2018 9:38 AM (GMT -6)   
What you could do while tapering pred is alternate your dosages....go to the dosage you were at previous and alternate it daily with the 6.25.

Condolences on the family deaths. Hope your child's arm heals without any issues. How did it happen?

Hugs...
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

C_G_K
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Date Joined Dec 2006
Total Posts : 1041
   Posted 6/11/2018 7:51 AM (GMT -6)   
I've had all kinds of weird things happen as I am tapering off pred. Occasional gushes of weird mucousy stuff, rushes of blood that seems to fill the bowl, loose stool, gut pain, and of course the typical symptoms of low cortisol (headaches, muscle aches, spaceyness). I don't worry about the GI weirdness unless it becomes a recurring pattern over a few days, or if all the U.C. symptoms seem to start coming back at once. The typical low cortisol symptoms can take a while to shake if you have been on pred for a while. You have to be extra cautious when driving or doing tasks that demand a clear head.
DX Ulcerative Pancolitis 2003. Subsequent flares limited mostly to left side
Flare every 2-3 years that is bad enough to require Pred.
9x Salofalk tabs, Sulfa free Rowasa nightly and Canasa each morning
Probiotics: Florastor Fiber: Psyllium.

Back in remission after getting rid of c-diff with Vanco, and a quick blast of Prednisone to cool things down.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/12/2018 7:15 PM (GMT -6)   
Ugh, I am feeling worse and worse as each day passes. I looked back at my symptom/medication log and I did get a bit worse about 10 days before my last infusion as well. Up until a week ago, my symptoms overall were getting better despite tapering down on the pred. I even had 5 days in a week only going 4 times and was having less urgency.
I have found alternating between weaning and not helps tremendously. Right now I am getting worse each day, and today I am having so much pain and I am getting fuzzy headed like I do when I go 10+ times a day for a while. Evidence of fuzzy brain, I think I have repeated a lot of my first post, but it's too much work to figure out what I should take out. I do know what you mean CGK about wierd temporary things as I have had some things like you are talking about each time for a day or two. This time I can tell it is flare.

Quincy, he jumped over his brother, and landed head/arm first. Thank you for the condolences.

Our AC went out this weekend on top of everything and being hot is adding to my nausea.

I contacted my doctor Monday morning and still have not heard back from them other than that my message will be passed on. I did it via patient portal. Got told I shouldn't do that, should be using triage. Last time I did that, it took three business days, a weekend, and calls to the front office to get my supposed same day call back. When I asked my nurse about it, she said to contact the person I contacted. Grrr. Also, they are refusing to send my Entyvio levels lab to Labcorp instead of Promethius. Now I have to call the office manager. My deductible for out of network is $20k, and though Labcorp is out of network, my local Labcorp only charges $489, while Promethius charges $2500 initially. I told them Labcorp sends it directly to Prometheus and that it would cost less for me, and despite Labcorp being their main lab they are refusing. Just felt the need to vent.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/12/2018 7:32 PM (GMT -6)   
It is terribly frustrating with UC to just always be waiting. Months tick by waiting for medications to work while one feels awful
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

countess18
Regular Member


Date Joined May 2016
Total Posts : 232
   Posted 6/13/2018 8:00 AM (GMT -6)   
Oh Spring,

I am so sorry about this. It just seems endless. It is good to vent but I wish we could fix the problem. I am so sick of this disease. Do you definitely have UC?
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/balsalzide wean
started Humira 11/17/17, off prednisone since 3/1/18,
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/13/2018 9:04 AM (GMT -6)   
Countess, my last scope was in March, and he also did an upper endoscopy with biopsies, and there was nothing but UC.

I did talk to the office manager, and finally got them to send my labs to Labcorp. Still nothing from the doctor.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

Sara14
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Date Joined Mar 2007
Total Posts : 4188
   Posted 6/13/2018 10:06 AM (GMT -6)   
Spring said...
It is terribly frustrating with UC to just always be waiting. Months tick by waiting for medications to work while one feels awful


I completely agree. It is like the doctors and nurses don't understand either. We are in extreme pain and feel like we are dying at times and they seem to not get what the hurry is... Sorry you are having to wait forever for your doctor to get back to you. I HATE that. I have been known to call up to 3 times in a single day if they aren't returning my phone calls and I am severely ill. I don't care if they find me annoying.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax. Have tried Bentyl, Donnatal, and Levsin; dont help.

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16278
   Posted 6/13/2018 11:15 AM (GMT -6)   
I am sorry and I do agree with the others, it's likely a return of flare (or it never tampered down to the extent it should have and the pred is carrying you through, making you think things are calm), but i also know that when I would drop doses of pred, there were always a few days between doses where I would feel concerned about my stability. If it goes on beyond that, or you're not changing dose, then it's likely flare up symptoms. I'd still push for the stool monitoring to see where things stand. I might look for a 2nd opinion too if I were in your shoes since it sounds like there's gotta be a reason they will not do as you instruct regarding the labwork. What's stopping them from sending to labcorp? Is it for their own purposes? Maybe they make more money when they send to prometheus directly. I hate to think like that, but a doctor's office is a business... and they aren't too responsive. Seems like it's not the best practice for someone with moderate/severe UC. My GI would respond to my emails the same day... and it was her directly, not a nurse. Do you go to an IBD center? Surgery has really changed my life for the better. Not to say you should go that route, but keep an open mind. All this time lost you never get back, and with severe cases, sometimes you're just waiting for things to hit the fan repeatedly. it's no way to live.
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

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/13/2018 2:54 PM (GMT -6)   
Nssg, it is in the back of my mind. I do think the Entyvio has helped, and I am not ready to quit trying stuff just yet. I want to ask about combining Entyvio and one of the immune modulators. I also think it might help to do every 6 weeks. I did make some progress with the office today. The office manager was helpful and got it taken care of regarding the lab. I thought of the same possibility regarding kick backs. I really like this GI, but his office has not been that great. I called triage today, and a nurse did actually call me back in around 2 hours. I shall see how long it takes to hear from the doctor. Usually it has been only 1 day but most of the time same day once he gets the message from his staff. I don't think there is an IBD center around here.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/14/2018 11:30 AM (GMT -6)   
Doc put me back at 15 mg steroids and ordered stool tests.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Tapering Pred. 7.5mg/2.5mg now

MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 26
   Posted 6/14/2018 11:59 AM (GMT -6)   
Each time I taper, my symptoms come back just a bit, and then when my body adjusts to the taper the symptoms go away. If something stressful happens or I'm not VERY careful in my life, my flare will start coming back. I don't think our adrenals can handle coming down off prednisone PLUS crisis events!! So maybe that's what happened to you.

To taper properly you really need a calm lifestyle, in my opinion!! Some people are lucky their symptoms totally go away on pred and then as they taper they just have the adrenal problems but no IBD symptoms. Other people their symptoms creep up and then calm down with each taper.

I think if you taper and have temporary symptoms that go away = taper symptoms. If they don't go away or get worse it's UC symptoms. Remember that as you taper your immune system comes back online and sometimes it is clearing out junk from your body that it couldn't on higher doses, so we get really random things happening in our bowels, or the actual UC comes back.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 1041
   Posted 6/14/2018 1:53 PM (GMT -6)   
MarkWithIBD said...
Each time I taper, my symptoms come back just a bit, and then when my body adjusts to the taper the symptoms go away.


That's a good way to describe it. There is a reason why they get you to stay on each dose level for a week. Often after 2 or 3 days of dropping, I get some uptick in one symptom or another that goes away in a day or two. If I end up with diarrhea, then (at least for me) it won't go away on it's own and I have to go back up and re-taper. I've only had to go back up and re-taper once, and I think I was tapering too fast.

In Spring's case, she has the added complication of adding Entyvio fairly recently, which muddies the waters even more.

With my last flair (triggered by c-diff), I was able to get completely off pred in only 8 weeks. 40 mg for 2 weeks, then drop to 30 mg, and then drop by 5 every week until off. That is the fastest taper I have ever done. The pred withdrawal has been minimal... just a little sluggish with minor joint and muscle aches, and head aches. Still able to function no problem.
DX Ulcerative Pancolitis 2003. Subsequent flares limited mostly to left side
Flare every 2-3 years that is bad enough to require Pred.
9x Salofalk tabs, Sulfa free Rowasa nightly and Canasa each morning
Probiotics: Florastor Fiber: Psyllium.

Back in remission after getting rid of c-diff with Vanco, and a quick blast of Prednisone to cool things down.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 6/14/2018 10:39 PM (GMT -6)   
I wasnt sure when i first posted, but its clear to me now. I do think the stress had a big part to play, and I think I probably need Entyvio a bit closer together. I have always had that surge and stabilization of symptoms with each taper, but this is definitely flare. I have really learned to listen to my body and not over do things, but the day of the funeral I ended up in charge of food for 40 people. I hurt myself I got so exhausted, and two days later, I was having water diareah and feeling awful. Things just progressed from there. cry
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