Question concerning energy after prednisone

[Clash]

Hi everyone!

C has finished his loading doses of Remi with great results and it has been two weeks since C fully tapered off the pred, thank goodness!! Prednisone did not help his inflammation at all(maybe held it from progressing???) but did give him all the nasty side effects. He was literally bouncing off the walls, it was a restless energy accompanied with insomnia, moodiness and a ravenous appetite.
I have noticed his energy levels aren't at his pre CD/pre prednisone levels. Am I right to assume it just may take some time for his body to right itself from the flare and prednisone? His next appt which is in August aligned with next Remi infusion, I plan on asking that his vitamin levels be checked. Do you generally ask this of the GP or ped GI. I thought I might make him an appt with the GP and ask him to do it but was wondering if there were links I could print to back up my reasoning.
Hope everyone is enjoying there Summer and getting some relief from their CD!!

 

[AZMOM]

You're spot on, Clash. Takes awhile to find a new normal both after a bad flare a definitely post pred. Our GI drives the bus on lab orders with copies to Claire's pediatrician.

Hugs -

J.

 

[my little penguin]

same here- GI does the orders and copies ped.

 

[Clash]

I appreciate the responses! Love this forum! Thanks you guys!

 

[DustyKat]

Although coming from a different angle it took my kids some time (months) to overcome their initial flare and the accompanying treatment.

In Oz the ongoing bloods, scripts etc are all done by the GP under the direction of the GI.

Dusty. xxx

 

[Clash]

DustyKat, when there was concern of infection right after start of Remi, I called the GI nurse and she directed me to take C to the GP and have bloods ran. She got the fax number from me and faxed the order. I was considering giving her a call and letting her know what I wanted and if she could send an order to the GP. The GP is local and the GI is a little over 3 hours away. I just don't want to come off wrong but I would really like these vitamin levels tested. Guess I should just go for it and if it don't work through GI then approach GP. Thanks for all the support and info!

 

[Sascot]

Sorry no experience with either pred or remicade, so no idea there. Glad he is feeling ok though even if not quite as energetic.
I know what you mean about not wanting to be pushy, I always get the feeling they are rolling their eyes when I ask for other things to be tested like magnesium, B12 or vitamin D. Our docs never do any vitamin checks which I don't understand as low B12 can cause alot of tiredness and as far as I'm aware vitamin D is important for IBD.
If your son is happy to go to the GP then it seems it would be easier to go there. My poor boy still goes to the kids ward as his veins keep disappearing so he still uses the butterfly needle.

 

[DustyKat]

Hey Clash,

Ummm...I just tell the GP what I what tested regardless of the GI orders. :lol:

To be honest I don't see why you can't go to your GP and discuss your concerns and have them do the bloods. The GI doesn't have to know so no treading on toes there and if something does return as abnormal then the GP can ring the GI and discuss what should be done. That way you come out smelling like roses! :ybiggrin:

Dusty. xxx

 

[Clash]

I do like roses! Thanks, I think that is just the plan to put in action! Wish me luck, I always go in fortified in my convictions and wilt with any type of rejection but I really want to know if C is suffering from any vitamin deficiency. I feel like if the Remi is doing its job now is the time to focus on the proper diet/minerals/vitamins to give him a good shot at catching up in growth before it is too late! Thanks guys again for the support, I know I sound like a recording with this but this forum has truly been a godsend!

 

[DustyKat]

Good luck hun! I know you can do it!

:goodluck::goodluck::goodluck:

Dusty. xxx

 

[jmckinley]

Prednisone is a nasty drug. My son always has hyperactivity and crazy appetite when he is on it. Ryan is somewhat prednisone dependent. It works great to stop the inflammation, but it comes back when we get off.

The taper causes the moodiness. I think it's the adrenal gland that is suppressed and has to kick back into gear when you taper off the prednisone. There's a touchy point there where it is triggered to kick in and they get very moody. It's around 20 or 15 mg, I think. The side effects of weaning can continue for a little while after the prednisone is stopped until the adrenal gland is working fully.

We will be tapering before too long so I have that to look forward to also. :-(

 

[Beebop]

I read somewhere that your body produces 7.5mg of the natural equivilent of prednisone each day... So when we take prednisone this natural production stops. It takes a wee while for our bodies to kick back into gear once we come off the drug that's why they taper the drug down and dont stop it all of a sudden. Additionally my GI has filled out a blood test form which is marked with repeat and I just get tested whenever I feel the need

 

[Clash]

Jmckinley, I hope your son's taper goes well. 20mg seems dead on as when the appetite went haywire, luckily after the final dose we saw the moodiness, appetitie and hyper restlessness/insomnia side effects subside completely. The moonface has taken longer and the acne will take longer still. It really worries me that the pred really didn't help with C's inflammation, it seems to ne the goto med in a flare and I'm not sure if that excludes it from our future arsenal. C started at 40mg for several weeks, 6 I think, then an emergency CT showed no benefit and the taper started. The next week he received his first Remi and the difference in pain and symptoms was quick. I know 40mg isn't the highest starting dose, possibly 60mg would have worked for him? Not sure, I'd be comfortable with 60 so I think I will push for EN first, next time. The doc seems anti pred(ped gi, diagnosing gi put C on pred) so I'm hoping he would go for EN.
Beebop- thanks for the info, think I'll bring up the repeat clause at the GP and see if he will go for it!

 

[AZMOM]

Clash - I was going to say the same thing. We are 1 1/2 hrs from our GI but have all our labs done locally. We have a set of standing orders then if he wants to add anything special, he faxes those to me.

Hugs -

J.

 

[crohnsinct]

Clash: Still waiting for O's energy to return to pre dx status...will let you know when that happens. As for bloods, since they draw at infusion it should be very easy to add the vitamin check at that draw (or were you wanting it done sooner). I would just ask the GI if they could add it. This way no additional pokes. My GI actually tells infusion center that they have his blanket approval to add whatever I ask for. I guess he figures it is easy to just draw what I want then to have to listen to me ask and justify etc.

Hey new avatar! Cute! Is it C and girlfriend?

 

[Clash]

Chronsinct- Welcome back!! I think I'll end up speaking to both, when C gets back in town we're going to have to see the GP and inform the GI nurse about some ongoing back pain he seems to be having. I am going to bring it up then I think. Not sure what is up with the back pain but it has been around since shortly before the cd started. Even though the Remi link says back pain can be a side effect this was going on before we started the Remi so I don't think that is it. I'm thinking may just be cd related joint pain? Anyway, I'm gearing myself up to push my way through to the tests I wont, probably won't even get the opposition I'm imagining. LOL!
Oh and yep that's the girlfriend, she's a sweetie!

 

[Clash]

So not sure if I should start another thread or not. C is with his father this week. They have been camping. I sent my whole entire medicine cabinet! LOL He is due back tomorrow and called tonight to say that his lymph node behind his ear and below his jaw is swollen. He says it is tender to the the touch. There is no fever and he doesn't feel icky he says. I am chalking it up to his allergies/sinuses and being out amongst nature. Of course, there is that part of my brain that wants to freak, go get him and run to CHOA but I guess that is not rational.

 

[crohnsinct]

LMAO! This is the medicine chest armed for armegedon right? I thought of you when packing for a three day swim meet..."now what would clash pack?" I even brought the Prednisone to ward off evil Crohns spirits.

O had one of those swollen nodes...remember? It was that rash on her scalp draining into that node. You are right it is probably nothing. Check it out when he gets home and if it sticks around go see ped. That said, I would want him in front of me asap also...why do you think it is me at the swim meet with O and not dad? Hope her hubby doesn't mind me tagging alongo n honeymoon:shifty-t:

 

[Clash]

I actually thought about O and hers, I asked C if he had a rash or anything going on. I really do feel as if he is having sinus drainage and such with allergy involvement and it has the lymph node inflammed. I know what you mean about going with O to the meet. I know C's Dad will call at the first sign of anything and he is in good care just ready to see it for my own eyes!! My husband is going to have to put up with me going through 1000 theories tonight before we fall asleep...Poor guy!

 

[Sascot]

:rof: I know what it's like to get all the meds ready! My pharmacist was laughing at me yesterday - she says I will need another suitcase just for the kids medications!
Hopefully the gland is just from allergies, even Andrew has had itchy eyes and runny nose the last couple of days. Couldn't go camping here, you would drown in the rain!