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The Prednisone didn't work!

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Posted 4/30/2011 11:32 AM (GMT 0)
I am currently flaring.  I take 4 pills of Lialda a day and 1 Canasa suppository nightly.  My doctor put me on a two month regime of prednisone starting at 40 mg and tapering down 5 mg a week.  I have been on it for about 3 weeks and still am experiencing extreme stomach pain, lots of blood, mucus, and diarrhea several times a day. 

I called my doctor and he said if it hasn't worked by now, it won't.  He is tapering me off more quickly.

I keep reading all these posts that prednisone is the only thing that works to bring most of you out of flares.  Why didn't it work for me?  Did it not work for other people too?  Where do I go from here?

I had an MRI last year to check for Crohn's.  My doc wants me to repeat it, along with ANOTHER colonoscopy (had two last year).  Can't wait to see these medical bills.

Posted 4/30/2011 11:54 AM (GMT 0)
everybody is different when it comes to meds...it works for some and not others. Unfortunately for me, Prednisone works and other aspects of my body have paid for it. It has caused Osteopenia in my lower back and hips and hell knows what else...it really is a terrible drug. I don't want to ever go on it again unless I'm in extreme cases. There is another steroid called Entocort, have you tried that? It usually doesn't work as well as prednisone but again, everyone reacts differently to different meds. Have you tried 6MP or has Remicade been mentioned to you?
Posted 4/30/2011 3:37 PM (GMT 0)
5 mg a week is an incredibly fast taper. I would get a second opinion for sure as the statement that if it doesnt work in 3 weeks it wont work at all sounds flat out wrong.
Posted 4/30/2011 4:08 PM (GMT 0)
Should have started higher. At least 50 for a week and taper could be much slower.
Posted 4/30/2011 4:10 PM (GMT 0)
Did you ever see improvement? 5mg a week is a fast taper under 20mg but if you're not getting relief at 40mg or 60mg, wherever you started, the speed of the taper probably isn't the problem. Did you stay at a high dose for a couple weeks to see if it would help at all? When I relapsed, it took well over a week at 40mg to get to where I was comfortable tapering 5 mg. Are you using any rectal meds? I had to add a steroid enema to get things under control while I was on pred. It was pretty severe and wouldn't let up.

I hope you see things turn around soon!
Posted 4/30/2011 4:25 PM (GMT 0)
I totally agree with NSSG. Five mg a week is a slow taper between 40 and 20, but under 20 it can be a fast taper. Some people jump from 40 to 20 with no problem except a psychological crash.
Posted 4/30/2011 4:47 PM (GMT 0)
Did he check you for an infection?! I think a scope is a good idea. Maybe you have a bug!
Posted 4/30/2011 6:48 PM (GMT 0)
Teachtoreach,

I would be asking your doctor for a cortsione enemas not suppositories they don't reach high enough to do much.  I have always had good results with hycort enema plus when i'm bleeding I had the oil from 8 vitamin e oil capsules into the bottle to stop the bleeding and help the lining heal.  Cortifoam is great also because you can use it during the day because it disolves fast.  This way you can be treating during the day and use the enema for the full night.

 I have never been on prednisone and refuse to take it when its given to me so I cant help you there.

Posted 4/30/2011 7:39 PM (GMT 0)
teachtoreach, I agree with the other posters. The one time I took pred for a bad flare my rheumy was the one who started me on it, and he started at 60 mg for a month, tapering from there. I was presenting with joint pain all over, plus bowel symptoms, which all went away with the pred over time. Starting at 40 and then tapering every week doesn't seem sufficient. My total time on pred was 3 months.

Where did your inflammation appear on your scopes last year?
Posted 4/30/2011 8:00 PM (GMT 0)
I agree with Ugh, you should definitely get checked for bugs. Stool tests and/or colonoscopy isn't a bad idea. If you have a bacteria in addition to your colitis, that could make it very difficult to treat. You could also try treating with an antibiotic to see if you see any improvement. I tried Flagyl/Cipro when I was in really bad shape and not improving.
Posted 5/1/2011 4:47 AM (GMT 0)
It is common for the inflammation and bleeding to come back when tapering. I did for me. The reason is that your body will produce less cortisol to compensate for the pred; so you reduce your pred and your body has less cortisol to stop the inflammation from coming back.

I ended up doing fecal transplantation and going into immediate remission.

Your GI will probably recommend something like 6MP and Remicade. They basically shut down the immune system, not the safest thing to do.

I refuse to take them. I also refuse to take pred again. The longer the duration and dosage with pred, the more chance there is to get side effects that are worse then having UC to begin with.
Posted 5/1/2011 11:43 AM (GMT 0)
teachtoreach,

Prednisone doesn't work for alot of people - you are not alone, as you can see from the replies.

I was put on 2 initial rounds of prednisone (together with the mesalamine suppositories, enemas, pills) and it did NOT work for me. They started me on 30 mg for 4 days, then went to 20 mg for 4 days, then 10 mg for 4 days, then 5 mg for 4 days and then none. The side effects were just horrible and no help at all. So you could be one of the may for whom prednisone just doesn't do it.

I am wondering if it's possible that in addition to prednisone not working you may be intolerant of mesalamine? Alot of people are intolerant of mesalamine - especially orally.

It gives them headaches, stomach cramps, and terrible diarrhea (that's what happened to me, and I've spoken with many  others who have had the same reaction and when they were taken off mesalamine, some of those symptoms subsided greatly). That might be the case with you?

And if that is the case , then what treatments are possible alternatives? They'll probably try and push the immuno-suppressants, and TNF, perhaps 6mp others.

I"ve refused to take those because the side effects are just too costly. Perhaps you should consider (and forgive my bias here) Transdermal LDN? It's worked wonders for me, and has helped so many others.

Posted 5/1/2011 9:07 PM (GMT 0)
Have you seen any improvement at all?

I am currently on pred for the first time. I started at 40 mg and have been at this dose for 4 weeks now. I kept reading on here how people got results in a day or two and became discouraged by this. When I started the pred I was having 10-12 bms/day, mostly blood and mucus. Over the course of about a week this decreased to 7-8 bms/day with less blood and mucus. The next week this reduced to about 5 bms/week with very little blood and mucus. Now after 4 weeks at 40 mg, I am down to one bm/day with no bleeding or mucus, but still not completely normal stools. So it took a long time for me to see great improvement, and I have stayed at 40 mg this whole time. I thought for the first two weeks that the pred wasn't going to work for me or I was going to have to up my dosage. It was really discouraging, but I am glad I stuck it out. That said I am experiencing all the side effects and will be even happier to get off of it. I will taper down to 30 mg tomorrow, even though my GI said to wait until two weeks after I felt "perfect."I have also been using mesalamine enemas during this time and think they have helped greatly, too. (My inflammation is pretty low.)

My point in sharing all this is that maybe it will help if you are willing to stay at a higher dose for a longer period of time. I know it is really scary and discouraging being on this drug and not seeing the results you want, especially when it seems like such a miracle for everyone else. I agree checking for a bacterial infection might be a good idea, too. I hope you are able to work with your doctor to find a solution. Good luck and let us know what happens.
Posted 5/2/2011 4:21 AM (GMT 0)
Thank you all for your replies!  I went through each response and jotted down notes to take to my doctor.  The things you all mentioned, he definitely has not.  Thank you!

 

Posted 5/2/2011 6:28 AM (GMT 0)
pred took nearly 3 months for me to work the first time, after that is has varied. This last time at two months I saw some improvement but not much. I just began remicade and felt better in about a day.
Posted 5/5/2011 7:58 PM (GMT 0)

notsosicklygirl said...
Did you ever see improvement? 5mg a week is a fast taper under 20mg but if you're not getting relief at 40mg or 60mg, wherever you started, the speed of the taper probably isn't the problem. Did you stay at a high dose for a couple weeks to see if it would help at all? When I relapsed, it took well over a week at 40mg to get to where I was comfortable tapering 5 mg. Are you using any rectal meds? I had to add a steroid enema to get things under control while I was on pred. It was pretty severe and wouldn't let up.

I hope you see things turn around soon!

When you say you relapsed, do you mean while you were ON the pred at a certain mg? And then you went back up to 40mg during your course?

The reason why I ask is because I started out on 40mg pred about a month or so ago, tapered down by 5mg until I got to 15mg and had to go back up to 20mg and I've been stuck here for a couple weeks at 20mg.

NOW, all of the sudden, the past few days..... symptoms of flare returning, and today especially HARD CORE urgency and pathetic excuse for stools 4-5 times with the cramping.. a little blood also showed up yesterday for the first time in over a month since I have been doing the pred.

The pred has been doing GREAT. I actually felt like I got my life back!!! But noooooooooooo.... apparently, from searching old posts, I see that it can just "all of the sudden STOP working?" Sheeesh!!!!

I'm going in on Monday to the Dr. do you have any suggestions? I am also on Lialda 2pills a day, and 20mg of Pred and that's it except for some Atavan for anxiety.
Posted 5/5/2011 8:19 PM (GMT 0)
MomWithUC,
Re: I'm going in on Monday to the Dr. do you have any suggestions?

Have you tried Canasa suppositories? They are mesalamine, but because they are rectal, rather than oral, sometimes they are better tolerated. I got very sick on the mesalamine pills, but found I could tolerate the Canasa suppositories.

I would recommend, besides the SCD diet mentioned, Slippery Bark Powder (not in pill form, the most effective form is powdered) taken a few times a day - this is nature's mesalamine: it coats the whole digestive tract.

Also, as a probiotic: VSL#3, it's got 450 billion active cultures and is made especially for those with Ulcerative Colitis.

Off course, no dairy - though you could have Almond Milk.

And lastly, my personal bias, I would suggest you get yourself  transdermal LDN (here's the thread to a prior post I made on it:
https://www.healingwell.com/community/default.aspx?f=38&m=2079694

Let us know how you are doing.

Posted 5/5/2011 8:51 PM (GMT 0)
MomWithUC, yes, I had my flare come back when I was down to 2.5mg of pred. I was on a pretty quick taper and went down 10mg a week from 40mg but at 10mg, I went to 5mg, then 2.5mg, then 0. When I got to 2.5mg, symptoms returned. I noticed quickly and I went up to 15mg hoping that would squelch the situation but it didn't. They came back and they were severe. I remember, I couldn't believe it... I went back to 40mg hoping I could taper down quickly again but I had to give it a bit of time. I guess things were pretty inflamed. This taper took quite a bit longer and I had to go really slow below 15 or 20mg. I also had to add 6mp which I thought would have worked quickly but it didn't. I was not one of these people who are feeling better in 2 weeks, my levels were all abnormal with my liver and my blood tests were showing that I wasn't getting much benefit from the medication. I added another medication and that seemed to get things balanced and I was able to taper down from 10mg. I also tried a lot of mesalamine meds at this time and used rectal meds and took a couple courses of antibiotics, stopped probiotics. I was very desperate. I thought I would never get off prednisone.
Posted 5/7/2011 3:54 AM (GMT 0)
I'm going in on Monday so I will update you and let you know what he plans on doing with me. It's just so depressing. I was doing GREAT, I mean GREAT for the past month or so, and then all of the sudden the past 4-5 days getting D, some blood, mucus, bloating, gas.... darn it! It's so depressing.... and I'm stuck at 20 mg of Pred. I really wonder if he is going to up my dosage or still taper me or what! Maybe he will increase my Lialda?

Interesting to know that you can go back up higher in the middle of your course, though, I thought you either had to stay where you are or taper down, but not go back up....
Posted 5/7/2011 9:09 AM (GMT 0)
Didnt work for me either. Earlier in the year it worked within days but end of summer did not work at 100mg. I am done with prednisone.

Instead I switched to sulfasalazine,Librax,Mebeverine - The first 2 halted the bleeding immediately which was really bad and had been for a month straight.
Posted 5/11/2011 4:04 AM (GMT 0)
Ok, went to the GI yesterday and had a sigmoid. It shows my (left sided) colitis is spreading... more inflammation which is mostly at the rectum area, but not as 'severe' as my Dr. was expecting. Whatever THAT means! So, he upped me one more Lialda a day, so that's three a day now. I am to still taper off the Prednisone at 2.5 mg every two weeks. He did say it's possible for the prednisone to just stop working. That really bums me out, I was doing perfect on it for the last month! I'm back to D again, urgency, cramping... ughhhh, it sucks!

However, he did prescribe me two weeks worth of mesalamine enemas. BUTTTTTT, I'm having a problem! He told me that i needed to do them before I go to bed and lay on my left side, keep them in all night... This is the second night now I've done it and I can't hold the medicine in for 30 seconds before it's all coming right back out with more D!!!! What is the trick to keeping the enemas in? I feel like I am just wasting the medicine if it's coming right back out. I seriously can't hold it in for longer than a minute!

So, up with the Lialda, down with the Pred and now enemas that I can't hold in.

I need enema advice please!
Posted 5/11/2011 4:27 PM (GMT 0)
There was recently a thread about retaining Rowasa/mesalamine enemas with lots of good tips. Try doing a search to see if you cen find it. Lots of people seem to have this experience with the rowasa at first.
Posted 5/11/2011 4:49 PM (GMT 0)
Mom, I find that enemas can be a bit uncomfortable for a few minutes following the initial insertion but if you can breathe deep and relax, sometimes you can hold it. When you're severely flaring, this may not be possible. If that is the case, I recommend trying cortifoam. The foam is much easier to retain. I used cortifoam when prednsione wasn't working and I was able to retain it but I am not sure if it helped too much. When I really noticed a difference in my condition was when I got into the theraputic range for 6mp.

You could try taking the max dose of Lialda, I don't think that would be a bad idea. If that and cortifoam together don't help, you may need to consider trying something stronger.

Have you ever tried Canasa? It's like Rowasa in a suppository, they are easier to retain but will not help the left side. Have you tried Colazal instead of Lialda? That is supposed to be more effective for left sided inflammation. I tried it but it made me have looser stools.
Posted 5/11/2011 7:07 PM (GMT 0)
What about giving myself a regular enema first, like a FLEET enema or something, and THEN waiting a few minutes to give myself the medicated enema? Good or bad idea?
Posted 5/11/2011 7:43 PM (GMT 0)
Mom, I am not sure about that. I believe I have heard people say that saline can irritate the colon. Maybe you should start another thread asking this question.

I can usually tell if I won't be able to retain an enema. If I feel bloated or fulll or if I haven't used the toilet or have gas I probably won't bother with an enemaa, I will use Canasa instead. If I have to go at ALL, an enema is sure to make it happen.

If you go to the bathroom less during the day, you could try using them in the morning after you use the bathroom. This could help?
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