Questions about prednisone wean?

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radchic

Joined
Dec 13, 2010
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Hi All,
As many of you know we started Lucas' pred wean about four weeks ago. We are now down to 10mg evey other day. since we have started this, he has been vomiting on his pred days. Its only happened twice but still worrisome to me. So of course, I google. It says that these side effcts should be reported to the doctor immediately. Of course, it is 4pm on friday afternoon where I am. He skipped lunch today and he gets horrible cramps if he doesn't eat, so, could that be it? Should I watch him through the weekend and call the doc monday? I don't want to over react, and I don't want to under react. Advice, please? And thanks for listening to my rant.
 
Prednisone can be rough on us. Friday or not, put a call into your doctor. They should always have a doctor on call. You may not be able to have your son be seen right away but at least you can talk to the doctor. If it gets really bad, call your local Emergency Room. They might be able to advise you. Good luck.
 
I agree with lesliegg...you should put a call in to the doctor. It can't hurt, and may even help. I've never experienced Gab vomiting with prednisone, so I don't have any other advice, sorry ;/
Let us know how he's doing..and hang in there mom! :)

hugs and love,
~T~
 
I just spokeI to the pharmacist. He says that he has heard of vomiting and that it is probably because of how the Doc is weaning. He says that they usually reduce to 5 mg every day then to 5 mg everyother day until off. It does make sense. He told me to keep an eye on him for the weekend, and if I am still concerned, call the doc on monday. Too late, already left a message.lol
 
It is also possible the pred is being rough on him. I remember I'd been on it a good while when I was about 11 and ended up being admitted to hospital because I was so ill. They thought it was due to the pred and I had it via IV till I was better and then I took coated pred which was easier on the stomach.

I'm not saying you son will get that ill by any means! But just something else to think about. Hopefully he'll be off it soon anyway. Hope he feels better soon!
 
:oops: Late to the party!

Ah, always better to be safe than sorry! Quite a coincidence that is only happening on Pred days, maybe it's a bit too much of a shock to the sysytem. Good luck hun and keep us posted, I hope all settles down for Luc and you too!

Thinking of you...:hug:
Dusty. xxxxxxxx
 
Is he taking any sort of acid blocker? while Claire was on pred, her gi had her on prevacid to protect her stomach. Prilosec is similar and available over the counter if you want to try it.

And I definitely agree with the rest of the crew that coincidence or not, the call to the doc is a great idea!

J.
 
Like Julie said, EJ was on Nexium while doing his pred taper. He never had any problems with it.
 
Good morning everyone,
Julie and Mark-he is on prevacid fast tab and sometimes 2 a day. Just couldn't get the 2nd one down before the acid was too much.
I told Luc what the pharmicist said, and we agreed that we would go to one pill a day. He was much better last night and even had a bonfire in the backyard with some buddies! I have said it before, these kids are made of rubber, they bounce back so fast! I am currently brushing up on my watching but not watching skills.lol Thanks everyone!
 
Haha, yes they are made of rubber!! If I vomit, I'm done for the day!! I've seen EJ vomit one minute and be 100% the next!! Nice metaphor Rach!!
 
Ah Rachel, this is so good read! I hope a little bit of Pred a day does the trick!

Much love, :Karl:
Dusty. xxxxxxxx
 
Well, heard back from specialist today. He said increase to 15mg and make an appointment to see him soon. Now the problem is... Lucas has flat out refused to increase the pred. The vomiting has decreased in length and severity, but he is still vomiting every other day but feeling good in between. We both agree that it is not a flare. Short of sitting on his chest and forcing them down, I am at a loss. I will call and make an appointment but by the time we get there, Lucas will have weaned himself completely! I really need to talk to that doctor. Any ideas on how to handle an irritable 16 year old with pred head? Man o man is he STUBBORN!(he must get it from his dad)lmao:whistleinnocently:
 
Haha, yeah the Dad's are always responsible for that sort of behaviour! :ybiggrin:

Well I have been sitting here thinking what I would do if it was Matt. This is such a difficult age because it is a very fine line between saying nothing and saying too much. Let's face it, we spend most of our lives walking on egg shells for fear of driving them away!

Having said that, I would sit down with Luc and ask him why he doesn't want to take the increased dose and discuss his reasons for it, discuss the pros and cons of each and the consequences of the decisions he is making. If he has valid points that you agree with, like he is not in a flare, then I would contact the doctor and tell him he will not take it so we need another plan of action.

I think if he sees that his opinions are validated and respected it opens the door to more constructive discussion in the future. I'm not saying that you aren't doing that because I know you already are!...it's just a general statement. :)

Good luck hun and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx
 
Ok so I talked with the doctor. I explained that we don't think it is a crohn's flare but more of a reaction to the wean. When I fully explained the symptoms, he agreed that it probably wasn't a flare and we just need to slow the wean down. The game plan is reduce by 1 mg every 4 days and see how that goes. We are very excited! So as long as doctor and patient are happy=happy mom!
Dusty- you are absolutely right. I am happy that he has an opinion and is not afraid to use it, and that he is willing to question the doctors. This will serve him well later in life. I have worked with some scary doctors and when patients blindly do whatever they are told, it drives me crazy! Thanks everyone!
 
Wow, excellent news Rachel!

I am so happy that that you have both had your concerns and opinions listened to and validated! Way to go Mum and Luc! :medal1:

:mademyday:

Dusty. xxx
 
Hi everyone,
Got Luc's labs back. His CRP went from .9 to 8.1 and his ESR went from 1 to 18 in one month. I am sooo frustrated and disappointed and sad and... So I faxed the results to the specialist. Not sure if I will hear back from him or not but we go back up in less then a month. This has been the week from hell at work and a roller coaster at home, so I think its time for a LARGE glass of wine and bubble bath and pj's. Anyone remember that commercial "Calgon, take me away..."?
 
Oh man Rachel, I'm so sorry to hear this...:hug:

I guess surgery is still not an option so did they mention if the Imuran wasn't successful moving to the biologics?

Does Luc have any tests scheduled to see how much inflammation is still present? Or if there is any further abscessing?

I don't know the commercial but sure sounds like a damn fine plan to me!

Much love, :Karl:
Dusty. xxxxxxxx
 
radchic said:
Anyone remember that commercial "Calgon, take me away..."?
Click to expand...

I do Rach!! If only a bath could make it all disappear!! Sorry Luc's numbers aren't better! Is he still having the nausea? Do these numbers make you and Luc reconsider whether it's a flare?? Hope things settle for him Rachel so you all can get some well-deserved rest!!
 
Mark- first thing I thought of. I asked Luc what he thinks, "Nope, not a flare" He is still having the nausea and vomiting. He started a couple days ago with mouth sores...
Dusty-at our first visit, he did explain the progression of drugs. I wanted to believe I was years away from that so didn't ask him to elaborate. Silly me!
Julie-I have a hot tub, plenty of room for you. If we poor a whole bottle in....
 
Hey Rachel,

Thinking about you hun...:hug:

When is the appointment with the GI?

Wishing Luc all the best and hoping things settle for him. Sending you both hugs and healing thoughts...:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Well, here we are, last dose of pred today. I am scared shitless. 15 days to the specialist app. Please God, just keep him stable till then. He has a pretty impressive sore on the side of his tongue and the vomiting has slowed to once every 3-4 days. I am having him rinse with warm salt water and naproxen for the pain and swelling. Any other ideas? Thanks everyone...don't know what I would do without you. Can't say alot of this stuff to anyone else because they think I am the strong one. BAHAHAHAHA
 
Wishing and hoping right along with you hun!

Did the GI prescribe the Naproxen? It is a NSAID and would normally be contraindicated in Crohns.

Dusty. xxx
 
Hi all, had our appointment today. His CRP was up to 10.9 and i missd the ESR but up, solution? up his Imuran to 150 mg. He is underdosed...YIPPEE! Ideally, the doc would like him back on 15mg of pred, but Lucas is having none of that, so the compromise was, if the mouth sores start to really hurt he can go back on 15mg but as long as he can stand it, he can stay off...YIPPEE. He left it completely in Luc's hands but reassured me he was alright with either option. At my husbands new specialist appointment (tues.)I heard a new to me term "aggressive crohn's". I haven't yet googled it but that's my next stop after this post. Anyway, hubby is scheduled for a scope on tues. and depending on what is found he is a remicade candidate. Now I just have to figure out how to pay for it! Thanks for listening!
 
I hope the Imuran does the trick Rach! Aggressive, severe I'm sure they're all the same. Why will you have to pay for the Remi?
 
Thanks for the update Rachel.

I hope the increased dose of Imuran works for Luc hun and it settles things down again. Fingers, toes and everything else crossed!

So sorry to hear about hubby mate. I'm with Dex, I think aggressive would be the same as severe? I hope all goes well with testing and treatment.

Thinking of you all, :hug:
Dusty. xxxxxxxx
 

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