tapering off prednisone, but diarrhea & some blood - does this happen to you?

My son just started tapering off prednisone - he was on 50 mg, down to 40 mg, and now that we've hit 30 mgs (started that dose yesterday) he had diarrhea this morning and then diarrhea again tonight, but this time with some blood (and quite smelly).

I've heard of flare symptoms happening during tapering - does this sound normal to anyone, esp folks w/ UC kids?

What about dropping the prednisone by 10 mg/week - this is what our doc suggests, but from what I've seen on this forum people seem to taper a lot more slowly. As well, we consulted another doc who thought we should be going slower.

We just had labs done two days ago and his blood levels were basically all normal. How can he go from that to bloody stools again in 48 hours. I'm so frustrated. This disease is MADDENING!

UCParent

I always have the same problem when going off the prednisone. I was diagnosed 6 months ago and I've been on prednisone majority of the time. I am currently tapering as well and I’ve had bleeding and D for about 3 weeks. I’m currently on 10 mg for the next 5 days and it will be 5 mg’s for 7 days after that and I’m done. I don’t like my GI doctor and I have an appointment to see a new GI next Monday. I’m sorry to hear your child is going though this as I can totally understand and relate to how he feels. I’m not a mother but I’m an aunt to 13 nieces and nephews and would be really sad to see any of them suffer with this. Stay strong as everyone seems to go into remission. I hope to be there someday soon.

I’m the only person in my family who has UC so I joined this form to know there are people out there who can relate and understand me it also makes me feel like I'm not alone. I have an awesome supportive family but one can truly understand what it’s like. Everyone here is really awesome and supportive.

I wish you and your son the best of luck!

Hi UCParent-

 

I am also a fellow parent and I think a 10mg taper a week is much to high of a jump.

My daughter was on 40 mgs for a few weeks and when we tapered it was by 2.5mgs

she went from 40 to 37.5 to 35- something like this. I think at the most a 2-3mg

 drop per week or so.

It took about 3 mo for the taper to end. At the same time we transitioned on to 6-MP. It all

went smoothly and we never saw blood again.

It seems like Sulfa is not working (?)- has your son tried other ASA's?

You need to be a a maintenance drug for his UC or he will go right back into a flare.

 

Please try to find a Dr that you like and trust.

 

Have you used Florastor to make sure the C-diff stays away? That is a very effective probiotic

especially where c-diff is concerned. Do some research on it.

 

Don't let the bleeding get too out of hand or you will find yourself going way back up on the

prednisone again.

 

Ask the Dr if he is Prednisone dependent at this point so he can get on a more effective UC

medication.

Have had UC for 14 years ... Have had to come off pred several times (right now coming down from 70mg's and am at 17.5 mgs). At about 30mg's I usually have the same problem so I go down 2.5mg's at a time now (which my body still doesn't like). Much of it depends on how long you have been on pred. The longer on the high dose, the longer and smaller the taper should be. My biggest physical problems (severe joint and muscle pain, intense anxiety, etc) seem to occur when trying to get from 30mg's to 20 mgs. I'd really say don't be rushing if all it does is put you back at square one. Also, once I get under 20mg's much of the emotional, anxiety problems subside a great deal ... the physical poblems can be intensified though. Also once I get to 15mg's I go down 1mg at a time.

I hate to say it but you need a maintenance medication to treat the UC- Prednisone will help but what about when you taper again...something has to be in place to control the UC.
Has your Dr suggested 6-MP while slowly coming off the steroids?

Hi Parent -
When I was on pred, it took me quite a bit of down-then-back-up-for-a-bit to get tapered off it. I hope your doc recommends you try going down by 5 mg at a time.... I ended up going down by 2.5 at a time at the very end (breaking the 5 mg pills in half.)

There have been some really good reports about 6-MP/Imuran on here....so it doesn't seem like a bad option, if it will get her inflammation under control.

I so feel for you. I hope you're both holding up ok.....yes, this is an incredibly frustrating disease. Is your daughter able to be in school? Do you have a 504 Plan in place for her....?

Hi UC Parent-

The 6-MP has given us our life back. My daughter is like a normal kid again.
She has been on it for almost a year and we have really had no issues with it. I am grateful everyday!

It was about 6 mo after diagnosis that we had to go in 6-MP. She had been on Steroids 2 times and it was obvious that they helped but we tried 3 different ASA's and it was clear that they did nothing but make things worse.

Our first drug after her initial diagnosis was Pentasa which she stayed on for 6 weeks and it just made all her symptoms worse and I could not understand why she was not getting better but actually doing worse!

Again 6-MP does seem like a scary drug and I really did not want her on it. On the flip side I had heard from so many parents who's kids were on it and they were doing great. many had been on for years and they were living normal lives without any active UC issues.

It is hard in the beginning- we had to get labs drawn very often and still do- anywhere from every 4-12 weeks depending on her numbers- None of this is easy but I wanted to do whatever it took to get her into a solid remission and that is where she is.

I don't know what the future holds for any of us but for today I am grateful and we live our life as we used to.

Good luck and please keep asking questions, research and keep us posted :)
I had many depressing days wondering if life would ever be OK again. Crying all the time, so depressed etc.
The Dr assured me that we would have better days and thankfully he was right!

Hi mom of athlete, welcome to Healing Well!

I am on 6mp and I don't really notice too many side effects. I think the best thing for her to do is to get off prednisone. I didn't want to start 6mp but I am thankful I did, the longterm use of prednisone is more likely to cause bad side effects than 6mp in my opinion. Has she tried using steroid enemas? Some of our members have goodluck with them.

You could start your own thread, you will get more response that way. There are lots of parents here with teenagers who are having the same issues you are, some of them may be able to offer some support and suggestions.

mom of athlete, I didn't want to have to go in for infusions. 6mp seemed more convenient and it's also an older medication. While it does have risk of side effects, I felt that it was safer because it has been used for a much longer time. I was considering Remicade a few weeks ago when I started to flare up badly but I was lucky and things have turned around. I don't know what happened or why but I am just thankful I had a turn around because I was set to start Remicade a few weeks ago and now I am feeling more stable than I have in a long time. I was on prednisone for about a year. It was very difficult to taper off for me, I had to start at 40 twice because I relapsed. I was on 15mg for a month probably because I kept having symptoms under 15mg. Finally I tapered at 2.5mg every week, when I got to 10mg, I went at 1mg a week. It took a long time but I was able to taper off!

I have seen a few people do it but they are mostly relying on 5ASAs for maintenence of their UC and/or a lot of rectal medications. I hate to say it but it seems like there are quite a few teens or parents of teens here who have a very tough time controlling their symptoms. I do not know if it is realistic to think she will get off prednisone without starting something stronger to keep her immune system from being overactive. I was thinking the exact way you are when I was going into my 4th month of prednisone and unable to taper off without symptoms appearing, I tried a handful of 5ASAs and none worked for me. If you're going to go that route, you have to find something that stabilizers her now - before she's been on prednisone for a really long time. I gained a lot of weight, I had moonface, excess hair... I am finally, 4 months after prednisone getting back to my old self and I am still not quite there. It's really depressing. I actually started an antidepressant because I have been so down about it all. It's best to start formulating a plan now. 6mp/Imuran do take some time to work, it took 3 or 4 months for me to get things where I was stable enough to taper off prednisone.

If she can't tolerate 5ASAs, has she tried Colazal? We have a moderator here who can't tolerate Asacol but she does well on Colazal. Some people can tolerate rectal medications but not oral? Many try dietary changes (never worked for me). Probiotics. There is another drug called LDN that I've seen people trying with some success. Has she tried antibiotics? There is a post about combo antibiotic therapy that seems hopeful. I have also heard of people having some success with wellbutrin. These are all less accepted medical options. According to a GI, 6mp/Imuran would be the best option (and probably the one with statistically the best success). If you do need to go that route, it's better to do it sooner than later because she may be like me and take quite a while to respond. Looking back, in my opinion, there is not much worse than the effects long-term prednisone use.

50mg of prednisone is enough to make anyone anxious. I couldn't sleep at all on any dose over 10mg. I was taking Ambien to get some sleep and my heart was always racing. It's a bad drug to be on, especially at a high dose. I don't think 6mp causes my fatigue, it may add to it but I have always had fatigue, even prior to starting 6mp. I am not sure of the cause.

Have you tried any rectal medications?

I hope you are able to find a treatment plan that works for your daughter. I don't think 6mp is the worst thing if it is going to help her get off prednisone. Some people see fast results with 6mp and can taper off prednisone quickly. Unfortunately for me, my results were limited and very slow. I am still thankful it helped me to taper off prednisone. Has she had blood work to see whether she can metobolize 6mp/Imuran?

Doctors don't seem to want to ever tell people the truth. Prednisone can not be taken long term and it only works while you take it, that's why as your son tapers, his symptoms return. It is only supposed to be taken short term while another med keeps him in remission while the pred is tapered down and off. I am really, really surprised that his doctor has chosen Imuran to be that med. It can take 2-3 months to work, if it works. It also comes with some side effects, up to including bad long term side effects such as an increased risk of cancer. 50mgs or Imuran is a very small dose. Very few can get by with a dose that low. Personally, I think his doc was irresponsible for even using Imuran in the first place. Most all doctors start out with 5ASA meds like one of the mesalamines, which have very few side effects and usually work almost right away if they are going to work. They are available in both oral and rectal and this is usually the first treatment step, often before prednisone, definitely before Imuran. Please read the resources thread at the top of the page and learn all you can. I really strongly disagree with what his doctor has done. By the way, acid relieving drugs can make a UC'r more susceptible to a C-Diff infection. Your son should also be taking mega dose probiotics of at least 50 billion CFU's per day or even much, much more. You may want to start a new thread.