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Can prednisone make UC worse?

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Posted 8/12/2010 9:08 AM (GMT -5)
I have Ulcerative Colitis for 10 years now. Been on some different meds (Asacol, Lialda, Sulfasalazine, Prednisone). 3-4 months ago I had a flare up and my doctor put me on 20mg prednisone along with asacol. I was taking the 20mg prednisone with 3.2grams of asacol daily. This worked great for a few months. I even lowered my Asacol dose to 1.6g daily.  I then went to see my GI a little over a month ago for a follow up/check up and he advised me to lower my dose of prednisone to 15mg daily. I did that and was still taking the 1.6g of asacol along with it. I was still doing great but I was getting severe headaches so I stopped the Asacol for a few days; still was taking the 15mg prednisone. My UC started to flare a little so I went right back on Asacol 1.6g daily. UC symptoms still getting worse daily so I went back up to my initial dose of 3.2g of Asacol along with the 15mg prednisone. Symptoms still declining daily so I called my GI and his Physician's Assistant said to go back up to 20mg prednisone along with my current 3.2g dose of Asacol. My UC was still getting even worse daily to the point where I was in a bad flare (going severeal times a day with blood; most times in the morning but also a few during the day and night). I called my GI again and they said to come in as my GI wanted to see me very soon.

This takes me to just this past Tuesday (two days ago); my GI advised me to up my Prednisone dose to 40mg daily; I also advised that I'd like to try Sulfasalazine again as that did work for me previously and is a lot cheaper (I was also considering the Asacol stopped working or was causing me the problem so wanted to switch). So now currently I'm taking 40mg prednisone and 2g sulfasalazine for 2 days. My Sypmtoms are getting even worse to where my whole mid section is tender/in pain rather than just my left side like usual. I'm still going several times a day with blood and my bowel movements are flakes (I guess that would be partially formed at best). Is it possible that since I have been on prednisone for 3-4 months steadily now and have upped the dose, that it is actually hurting my insides? My only other option it seems would be to start the last/highest tier meds like Remicade or 6mp next and if they fail then surgery would be the last and final option. Any ideas?

Ona side note, only a 6 inch or so portion of my colon is the main problem the doctors have told me (along with my current GI); 2 doctors said if I would get surgery they could just remove the 6 inch portion of my colon that is the problem and reattach and I may be fine forever (I would of course still get monitored/colonoscopies); has anyone ever heard of that, where just a small portion of the colon is removed and then the rest of the colon is re-attached? It sounds good but does it have a good success rate?

Post Edited (UCmusicguy28) : 8/12/2010 8:13:09 AM (GMT-6)

Posted 8/12/2010 9:13 AM (GMT -5)
Prednisone is a miracle drug for me and has never made me worse. I have noticed that the more frequently I am on it, the higher dose I require to feel better. You having a steady 20mg dose for several months is strange--I would have thought you should have been tapering down when you were doing better. So now that you are in a flare you have no place to go but up on the dose.
Have you discussed imuran with your doctor? Do you use any rectal drugs?
Good luck,
amy
Posted 8/12/2010 9:23 AM (GMT -5)
Thanks for the reply AmyWaffle. Have not discussed Imuran and no rectal meds ever. I used to only take Prednisone 3-4 times a year for around a week when I had a flare. I would take 30mg first day, 20mg 2nd day, 10 mg 3rd day, and then 10mg for another couple days after and then my flare would go away until 3-4 months later where I'd do the same thing. Around 3-4 months ago is the first time I have been on prednisone steadily for that time.
Posted 8/12/2010 9:30 AM (GMT -5)
It could be the Asacol making your symptoms worse; I doubt it's the prednisone; if anything the prednisone is no longer working for you and additional drugs are needed.

Contrary to what your 2 doctors have told you, removing only the diseased portion of your colon/rectum is not advised for UC patients. The disease will return. Any colorectal surgeon worth his/her salt would never do this. I had UC only small patch the size of a quarter. However, the symptoms were bad enough, and drugs failed, that I had a total proctocolectomy with a jpouch. Removing that small section was not an option.

If you have never tried rectal meds you should. This might just be the right drug to get you in remission. I'm surprised rectal meds have not been offered as a first line of defense? I would question the credentials of your GI in that he/she has never offered rectal meds and that he/she thinks a resection would be successful on a UC patient.

Sue
Posted 8/12/2010 9:40 AM (GMT -5)
Thanks suebear. WIthin the last 2 years I saw 2 colon-rectal surgeons; first one said he could remove just small portion of colon and re-attach; was really pushing me for surgery so I went to see another surgeon for a 2nd opinion and he did advise that surgery is only necessary if pre-cancer is seen; he also advised he's never heard of just removing a small portion of the colon an dre-attaching; entire colon would need to be removed. He referred me to a GI officve where there are several GI's; he recommended a specific one but he was very booked for months so I chose to see a different one. My current GI does seem like he doesn't know too much as I seemed to be explaining things to him more than he ws me. I was the one to tell him to switch me from Asacol to Sulfasalazine a few days ago as I thought the asacol could be making me worse. I may have to see another GI. In the 10 years I've been battling this diseas, no doctor (have seen a total of 4, counting my current GI) has ever tried or even recommended rectal meds for me.

Is your pouch on the inside or outside? I heard you can do either; if I would ever have to get surgery I would probably want the pouch on the inside. I read that you have to have the pouch on the outside first for 10 weeks or so and then it can be placed on the inside?
Posted 8/12/2010 9:57 AM (GMT -5)
The jpouch is on the inside and is made of the small intestine. It basically replaces the rectum. I had a 2-step surgery; removal of the colon, construction of the j-pouch, and a temporary ostomy. After 8 weeks of healing the temporary ostomy was reversed and my j-pouch was put to work. This was done 9 years ago; I'm very happy with the results. If you ever get to the point of choosing surgery, select your surgeon wisely. It's a complex surgery and you would fare better by choosing a highly experienced surgeon. Hopefully you won't get to the point of needing surgery but as with all UC patients I think one should be educated on the possible eventuality of surgery since 20-3-% of UC patients will need it.

I have learned that the specialty of GIs is vast. Some become experts on liver disease, some on ulcers/GERD, and some on IBD. It sounds to me as if your GI's focus is probably not on IBD.

Sue
Posted 8/12/2010 10:10 AM (GMT -5)
If you can tolerate it, sulfasalazine has shown itself to be more effective than Asacol.  It was for me.  However, I'd suggest that 2g is not enough.  That's probably a minimal maintenance dose.  In a flare, 4g (eight 500 mg pills) is suggested, and a few docs will push that higher.
Posted 8/12/2010 10:12 AM (GMT -5)
I had 10-12 inches of colon removed (sigmoid colon) as it was suspected I had endometriosis in the colon in that area. It turned out to be my old UC returning, according to the pathology. I had a good 3 weeks without pain but then the UC flared and has been bad since. Am trying to get it back under control and it's working slowly with Lialda and probiotics. I too tried sulfasalazine again as it had worked for me many years ago. It got worse so switched to Lialda. And added probiotics which I think likely helped even more. I have used prednisone for other issues (allergies, asthma, inflamed lower back issues) but not for UC so far. My sister had her whole colon removed 20 years ago and does not regret that decision (UC too).
Posted 8/12/2010 5:00 PM (GMT -5)
There is a possibility that you have an infection of some kind... Prednisone makes you more susceptible to picking up things like c.diff and other infections. It might be a good idea to ask your doctor about some stool samples and blood work. The prednisone might still work, 2 days isn't very long. This time when you taper the prednisone I think it's a better idea to keep your asacol or sulfasalazine at the full dose until you're off the pred. Good luck! :o)
Posted 8/12/2010 5:12 PM (GMT -5)
Ugh Just Ugh (that's how I've been feeling the last week): My GI's physician assistant advised me to give a stool sample and gave me a container. My GI said it's not necessary but I think I'm gonna give one anyway, as I thought about the possibility of infection. It's very odd the prednisone is not working fo rme now; always did before instantly without problem. I'll probably hand in a stool sample tomorrow. I'll see what happens the next few days; hopefully the higher dose of prednisone kicks in and starts working. I also took 4 lialda pills today. I decided to go with that as I've had success with Lialda before and have a half bottle of pills left; why not use em'.
Posted 8/13/2010 9:00 AM (GMT -5)
Stool sample submitted earlier this morning. They're going to test for c-diff, which from what I understand is an infection. I actually hope it is an infection. That way I can get it taken care of and then my UC meds (prednisone and Lialda) should work to keep my UC under control like they always used to. Thanks everyone for the replies. I'll post an update when I finds out the results of the stool test, which should be later today.
Posted 8/13/2010 9:26 AM (GMT -5)
You should be trying rectal meds and not relying on prednisone. It will eventually not work for you (as per most members on here).

q
Posted 8/13/2010 11:43 AM (GMT -5)
Hmm, my first thought is infection, if the steroids are making it worse.
Posted 8/13/2010 2:42 PM (GMT -5)
Well, results are in and no infection. They tested for c-diff only. They are going over my chart and are going to call me back with where to go from here. I'm already on a pretty good dose of prednisone 40mg daily and 4 lialda pills so we'll see what they say. I just ate some spinach and sunflower seeds as I read someone on here had luck with that, so figured worth a try. I haven't had to run to the bathroom in the last almost 2 hours which is good. I was going every 30 minutes the whole day up until 2 hours ago. Maybe I have some kind of virus or food poisoning that's working it's way out. That or just a horrible flare, my UC has turned to cancer, or someone slipped some poison in to my food or drink haha. One of those it has to be.
Posted 8/13/2010 5:43 PM (GMT -5)
yeah, it must be........?
Posted 8/13/2010 5:45 PM (GMT -5)
Well, I had to call back my GI's office and the physician assistant said to go to the ER if I keep having to use the bathroom every 30 minutes. Said nothing about changing medications or seeing the doctor soon. Not too happy that they didn't really leave me with a plan of action other than the ER. I would have liked her to say we'd like to see you asap next week to go over and adjust medications but go the ER before then if necessary. I may go the the ER if it keeps up but really, what can they do other than the prednisone I'm already taking and give me IV fluids? They'll probably also tell me to see my colon-rectal surgeon to discuss future treatment. I am definitely going to call my colon-rectal surgeon that referred me to my current GI on Monday and explain what's happening and that I need something else done and the GI isn't doing it. This sounds about right, yes? Thanks for listening/reading.
Posted 8/14/2010 11:04 AM (GMT -5)
Well, I went to the ER last night and they gave me an IV with salt water, checked my blood, and also took a stool sample. My blood work came back good and I wasn't dehydrated (I do drink lots of fluids daily); the only thing they said was my white blood count is up a little because of the prednisone. No stool sample results yet (takes 24 hours); they gave me an antibiotic to start taking since it may be a possible infection; told me to up my dose of prednsione from 40mg to 60mg for a week, continue my Lialda, and also contact my GI and get in asap to see him.

I'm still going to the bathroom a rate of every 30 minutes it seems, sometimes sooner and sometimes later. My bowel movements are almost all liquid blood but the times I do pass little partially formed stools, it hurtsd so bad I curl ov er in pain each time they pass; very excrutiating. I'm probably so inflammed that even the little partially formed stools I have to pass have a hard time getting out. Ugh!! I just want to get better.

Posted 8/14/2010 12:22 PM (GMT -5)
You know...we've mentioned rectal meds. Seems that you aren't interested in trying them?

q
Posted 8/14/2010 1:19 PM (GMT -5)
I'm willing to try anything at this point. I will suggest this to my GI when I see him hopefully on Monday. I mentioned this and stronger meds like Remicade to the ER but they recommended I talk about that with my GI/colon rectal surgeon. Hopefully this severe flare stabilizes/passes soon. If I have to get to remicade, so be it. Even surgery is now entering my mind but that is the final option.
Posted 8/14/2010 2:21 PM (GMT -5)
I just wanted to add that Pred makes my colitis worse, and i had no infection. I am intolerant to all medication. I came out of a bad 4 month flare back in April, so i really do know how you feel. I am still not 100% right, but i am not complaining! I manage to get through my flares with no drugs, but i have a new consultant now, with new ideas, so i am hoping that i will finally get the help i need.

If you need to talk email me x
Posted 8/14/2010 6:01 PM (GMT -5)
Prednisone never made my Ulcerative proctitis worse but it did other harmful things to me....osteoporosis, hypertension and raised my blood glucose levels. I became prednisone dependent and decided to have surgery. Now the only meds I take are Prevacid, which my colorectal surgeon wants me to take for eight weeks (only a few weeks left) and Toprol for my blood pressure.....yippeeeeee! My system feels soooo cleansed, it is just wonderful. My GI doctor was upset that I decided to go the surgery route....he wanted me to try yet more drugs . Needless to say I am not returning to him!
Posted 8/16/2010 10:33 AM (GMT -5)
Thanks for the replies. Mercury28: thanks for the info. and offering to talk; may take you up on that one day. I'm still in a horrible flare and am going to see a new GI today that my colon-rectal surgeon recommended (so hopefully he knows more than the other GI I was seeing). I'm going to discuss the rectal meds and mainly the top tier/final stage medications (6mp, Imuran, and remicade). We'll see what happens. I'll post back after I see the doctor today.
Posted 8/16/2010 11:38 AM (GMT -5)
Just to let you know that your doc might say....rectal meds won't reach all of the area that needs to be treated...blah, blah..etc.

Say you want to try them anyway. If you can take mesalamine, they would be a good first place to start.

q
Posted 9/11/2010 6:46 AM (GMT -5)
Wanted to post an update on my situation: Well, I was in the hospital for 6 days on bowel rest (no eating or even drinking clear liquids the first 2 days; clear liquids only the next 2; then finally able to eat the last 1.5 days); they had me on 80mg of intravenous prednisone and 4 1.2g lialda pills a day while I was in the hospital. This helped and my bleeding and spasms stopped. My doctors said most likely the Lialda and Prednisone wasn't being absorbed at home because of the flare/going to the bathrrom numerous times a day and it took bowel rest and getting the prednisone in me intravenously to start working again. I was sent home and was instructed to continue 60mg prednisone and 4 lialda pills once a day. I did this for the last 2 weeks, along with eating a low residue and no dairy diet. I was doing great (going once a day; formed stools and no blood) and I just went to see my GI a few days ago.

My GI recommended I get a colonoscopy at the end of this month as they are concerned with a particular area of my colon; also because of the horrible flare I reently had (which was something new/never had like that before); my GI also lowered my prednisone dose from 60mg daily to 40mg daily (I thought that was a bit of a drastic drop but nevertheless). So the last 3 days I have been taking 40mg prednisone along with 4 lialda in the morning. I'm still doing good;only going once a day and no blood but today I noticed I had formed stools and then at the end it looked like partially formed. I am of course now worried that it's on the decline again since the prednisone dose is lowered. Though I'm not going to jump the gun just yet since other than the partially formed stool at the end, nothign else is wrong. I will see how this progresses. I do have a question though: does anyhone think dropping from 60mg prednisone to 40mg daily is too big a jump to start tapering?

My GI said depending on how I do with tapering off the prednisone and how the colonoscopy looks, the next steps would be to stay this route with the prednisone and Lialda until I can completely stop the prednisone adn just stay on the lialda - this is if everything looks good in my colon and I have no symptoms. If during the prednsione tapering my symptoms get worse and/or the colonoscopy looks bad, the next steps are remicade and maybe even surgery. My hope is I am able to taper completely off the prednisone and just take the 4 lialda daily. I have hope that will happen, especially if I watch my diet. Well, thanks for reading/listening to my story. I wish everyone well; this is certainly a horrible disease.

** After typing this, I decided to take an extra 15mg of prednisone this morning. So that's 55mg total. I feel this is best, going from 60mg to 55mg for a week or so and then down to 50mg, etc.* 60mg to 40mg seems too drastic.

Post Edited (UCmusicguy28) : 9/11/2010 6:13:09 AM (GMT-6)

Posted 9/11/2010 10:04 AM (GMT -5)
I am happy to hear you're finally feeling better and getting this under control. I do think a jump from 60 to 40mg is a bit drastic considering your history. I know they probably want to get you down to a lower dose because prednisone can cause so many terrible side effects. It sounds to me like a more powerful maintenence drug should be discussed. Perhaps Aza or 6mp? I think the first doctor you were going to sounds like some kind of quack. Who puts someone on 20mg of prednisone and doesn't give follow up instructions? Very strange... I also don't know why they only checked your stool for c diff. There are other parasites and bacterias you could be dealing with like H pylori or CMV, many others... Why do the minimum? They should have checked for everything under the sun. Such a waste to give samples and not have a full workup.
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