questions about possible "withdrawal" from prednisone or effects of remicade?

My son was on predisone (60 mg) from Dec 26th - Jan 15th. On Jan 14th, he had his first remicade infusion (with no problems thank the Lord) His doctor told us to stop the prednisone the day after his remicade , so he has been off since Tuesday. I've noticed the last two days, his face gets all flushed and swollen, and even feels feverish.  I know swollen cheeks (moon face) occurs when on prednisone, but it seems he is having more problems with that now since he stopped. Also he seems so blah and withdrawn.(he's only 8) Is there "withdrawal" symptoms from prednisone or is this something from the remicade?

boobearsmom, stopping Prednisone abruptly is very dangerous, especially at such a high dose. Withdrawal symptoms can include weakness, tiredness, loss of appetite, weight loss, vomiting and diarrhea. low blood pressure, low blood sugar, joing pain, muscle aches, fever and ileus - enlargement of the intestine that can lead to rupture. I would suggest putting him back on at least 50 mg. until you can get ahold of the doctor on Monday and talk to someone about this. Even at lower doses, I've always seen people tapered off at about 10 mg. a week, could be faster after only two weeks, but I still wouldn't think you'd just stop it with no taper.

Ah, okay. The entocort replaces the Pred, so no he probably shouldn't take both at the same time. That's a pretty high dose of entocort, too - I'm an adult and when I was in flare and on it I took three capsules each day. The entocort doesn't dissolve and get absorbed until it gets to the colon, which takes a few days, so he could have been low for two or three days, and he may be better tomorrow.

Remicade side effect could be a possibility, but I think those sort of reactions usually happen much sooner- even while the infusion is still running. A lot of people are tired after, though.

I'd suggest checking his temperature and watching for signs of infection, then talk to the doctor on Monday. If he has fever or pain, children's tylenol should help. I hope he'll be feeling much better tomorrow. If he's worse, you may want to call your doctor's service or whoever is on call for him tomorrow. Children aren't just little adults, and they sometimes react differently to things than we adults do.

Hi Boobearsmon - there is a little bit of information on Wikipedia about Budesonide which is the actual name for the Entocort your son is on. The only other thing of interest with some good safety info and precautions is the Entocort company website.

I don't have any kids of my own, but my advice to you is "If in doubt, get a second option, and a third... Just because they're a doctor doesn't mean they know what they're talking about!". If you are not sure, always call your family doctor or read up on wikipedia about the drugs your child has been prescribed.

If you are not comfortable with the Gastro Specialist that is looking after your son's health - get another one.

If my child had been on 60mg pred for 3 weeks and the doc just told me to stop it, I'd be grilling him cuz its dangerous as all hell. Other members can correct me if I am wrong as I have never used Entocort, but the Budesonide steroid, although often less damaging, can take quite a while to start working. Longer then prednisone anyway.

I also dug up some info about prednisone concerning Dependency as well as a good summary of the Side Effects.

I went from entocort(3 piils 3 times a day) to 40 mg of prednisone but it might be easier to go from entocort to pred than the other way around. Both started working the first day I started them. I found that my doctor has an after hours line where one of the doctors is always on call. You might try calling the number and see if there is a message or something.

Hi BooBearsMom - I am your neighbor to the north, in NC. I think that if you have a good Gi, there probably is no need to change. Having said that, a second opinion is never a bad thing, in my opinion, or, at least not an unreasonable thing. So, because you are in SC, I just wanted to make sure you know about the GI clinic at UNC-Chapel Hill, here in NC. It is a nationally-recognized clinic that specializes in tricky cases. And, they have GREAT nurses on the GI clinic nurse phone line, who you can call and can give you good medical info. So, depending on where you live in SC, it might be worth looking into the GI clinic at Chapel Hill. Having said that, I don't know if they do much in the way of pediatric GI, so you might want to call first and see. But, may be worth a bit of research.

in any case, my experience thus far has been that only the head pharmacists knows anything, so I never bother dealing with anyone else. and, that as long as I have conifdence in my GI, I shouldn't worry about whether or not the treatment makes sense to someone else.

Hang in there. I am very glad to hear that your son is feeling ok. definitely keep an eye on the flushing and the fever. but, you know, his little body has been through a lot, so he might just have a low-grade fever as his body adjusts to everything.... it's a lot of stress on him, I am sure. But at least he is feeling better, which is a giant step in the right direction.

ok i am so pissed....sorry all, but i just got off the phone with the doc and asked him about the entocort and he said entocort 3 mg 3 times a day, I asked him about that before and he must have misunderstood me, but it seems the d*&$ pharmacy had it wrong from the beginning and I even questioned them on it from the very beginning, it IS 3 mg 3 times a day. not 3 pills 3 times a day. Thank God we didn't take it for long, a few days before he started the prednisone and three days this week, the doc said not to worry that since it was only for a few days and since he had been on the predisone at a high dose it wasn't like it would have been a big shock to his system, but to go to three a day not three, 3 times a day. now i'm definatley changing pharmacies. as far as the flushing and mild fever the doc said to keep and eye on it and see how he is in a couple of days, but to call if he seemed to get worse, could be from coming off the prednisone or the remicade itself, but to watch it and let him know, gave me HIS cell number in case i needed to call him at anytime.

I was put on pred for 5 days using 20mg tablets 3x a day for shortness of breath...at the end of the 5 days, it was cold turkey and no weaning..Dr. said that if pred is given less than 7 days, no weaning is required.. Well, let me tell you,,that is NOT true. I lost 17lb in less than a week. No appetite, bloating, shortness of breath, shaking, anxiety, dry mouth and on and on. I am normally an easy going guy, but became agitated easily, panic attacks, etc. I will NEVER take this drug again.. Its been a week today since I stopped and still am having episodes of shortness of breath.. I've read that this drug can morph into showing signs of the exact symptoms that it was given to stop. During the initial 3 or 4 days after stopping pred, I felt like a walking zombie. Thought I was going to suffocate. Went to family physician,,followed by scheduling appt with lung specialist. Finally getting appetite back and only a couple episodes a day of shortness of breath.. I am totally convinced that this whole scenario was due to not being weaned of off this terrible drug..PLUS, I fault the Dr. at the emergent care center where I went after hours for not giving me a heads up about the possible side effects as well as the weaning factor of prednisone. Even my family Dr. felt that this was a high dose (60mg) per day, and even though given for only 5 days, should have been weaned...I'm 66 years old and typically in good health. Only meds I am on are 10mg daily of lisinopril. Nothing else.. This drug knocked my on my behind.. If anyone would like to comment, please do... This is my 1st post on this site. I certainly hope that the above info helps anyone suffering withdrawl from prednisone.