IV Steriods in the Hospital...Will he have to wean off them when he's out?

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UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 11/19/2007 6:32 AM (GMT -7)   
So my husband has been having a huge flare since February and all the Meds (Prednisone) have been really messing things up.  He started having a hard time swallowing and feeling super nauseous all the time so he's been living on Applesauce and canned peaches when he's not throwing up.  Finally the Dr. saw his blood work and said he needed to go to the ER because his sodium level was at 119 when it's supposed to be 140.

 

He's currently in the hospital because he was so mal-nutritioned. They have been pumping him full of sodium and Amino proteins (I think).  They also have him on 80 mg of some steroid.  He was on 2.5mg of Prednisone when he went in.  Since he's on such a high dose, does this mean he will have to start at a high level again and take months to wean off

it?

tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 11/19/2007 6:57 AM (GMT -7)   
I am so sorry to hear your husband is having a tough time. If he is back on pred. then yes he will have to slowly taper off it. What other meds was he on for the UC prior to the hospital? Keep us posted!
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UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 11/19/2007 9:27 AM (GMT -7)   

He's had his 4th infusion of Remicade, he was supposed to get it in another month but they moved it up to today.

 

He was also taking Sulfazine and Rowasa enemas every night.  He was at 2.5mg of Prednisone taking it every other day trying to stop it but when he went to the emergency room on Saturday they gave him 80mg of a steroid starting with an S.  Is he going to have to start at 80mg of Prednisone when he gets out of the hospital (hopefully he’ll get out before Thanksgiving).

 
The frustrating thing is it wasn't the actual colitis that sent him to the ER it's that he was so weak from not eating because the meds made him nauseous and caused him to throw up 2-3 times a day, which in turn caused his throat to be sore which limited his food even more.

WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 11/19/2007 11:24 AM (GMT -7)   

I too was getting steroid injections in the hostpial but it was Prednisone.  Not sure what your husband is getting....

After I was released from the hospital I was prescribed to take 40mg. of Prednisone orally everyday and taper by 5mg. every two weeks.  But the side effects of Prednisone were too much for me to handle so my GI doc said to taper 5 mg every week instead of two.  I am now down to 15mg.

I think 80mg. of Prednisone is way too high but I could be wrong.  I think most doc's prescribe a high dose of Prednisone between 40 mg. and 60mg.


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/19/2007 3:35 PM (GMT -7)   
I was on 125mg dose of the IV steroids (they're not called prednisone, but I can't remember the name). When I came home they had me on 80 and told me to come down by 10 every week. I think that's fast from what everyone said here, but I wasn't coming down any slower. I couldn't see, think, etc, on them, so I wasn't staying on them. I never got better, but I never got worse either. I was still really sick when I left the hospital 9 days later (should have been 3 days and better). I also did the vit e enemas and licorice drops. That's the only reason I got better at all. I started as soon as I realized the steroids weren't going to work and they told me I really needed to do surgery.
Is the sulfazine making him sick? They have non-sulfa versions.
I hope he gets better and gets out. I also hope that remicade kicks in and he won't have to live long with the steroid side effects!
dx 4/05 with pancolitis UC after birth of my second child...
18 months of vit e enema and scd remission
Flare since 7/07...almost to surgery, now almost well through mostly natural stuff
Trying to make up the difference with...
Lialda 4/day... I don't know, 3 months maybe?
Remicade 10/26, 11/09, next 12/3
Imuran 50mg at night 11/11
 
Been there, tried that....
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/19/2007 5:00 PM (GMT -7)   
a few weeks ago i was in hospital and i was on IV steroids. 50mg 4x a day. so 200mg a day and i think they said it was hydrocortisone steriods, not prednisone. as soon as i left hospital they put me on 50mg of prednisolone a day. and im still on it.
i guess the weaning part is the pred they put you on when you get out. ??
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only. 
50mg prednisone 1x day with breakfast
50mg imuran 1x  8pm stopped it to try and have a baby
2x 500mg mesalazine 2x day + night
colifoam 1x at night
now taking calcium supps for pred side effects
VSL#3 didnt work - Aloe Elite didnt work - Budesonide 9mg day didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/20/2007 7:14 AM (GMT -7)   
I hope he's getting better on that! I forgot, I was on 125mg dose twice a day, and then it didn't last but a few hours, so I went to 125mg 3 times a day. Kazygirl, I didn't even add that up. That's 250 and then 375. WHolly Mholly! I didn't even want to know that. No wonder I was so screwed up.
Anyway, that version didn't help me, but when they put me on the solid prednisone at 80mg I did see a difference the first day. I was still really sick, but the IV stuff apparently doesn't work for me.
Now that 375 is going to haunt me. Darn it.

I hope he's better!
dx 4/05 with pancolitis UC after birth of my second child...
18 months of vit e enema and scd remission
Flare since 7/07...almost to surgery, now almost well through mostly natural stuff
Trying to make up the difference with...
Lialda 4/day... I don't know, 3 months maybe?
Remicade 10/26, 11/09, next 12/3
Imuran 50mg at night 11/11
 
Been there, tried that....
 


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 11/20/2007 7:52 AM (GMT -7)   

He's doing better.  He's out of ICU.  He got two bags of blood yesterday and 3 bags of plasma.

It ended up (at least what the Dr. is saying) that it was the diuretic that he's on, triam, was what caused the final super fast loss of sodium. 

He got put on the sulfazine pills (versus sulfasalazine which has smaller pills size wise but the same mg amount) and started having a hard time swallowing them because he was taking 16 a day and they were big suckers.  He was started on remicade and that helped him be able to cut the pills down to 8 a day but he started gagging on them which led to him throwing up (almost) everytime he took them.  That made him nauseous which stopped him from eating along with the sore throat from throwing up so much.  All that made him vitamin and everything deficient which caused him to retain water.

The doctor prescribed a diuretic for the water retention which made him pee all the time and lose all his sodium and ultimately landed him in the hospital.

The good news is he's enjoying his stay (library cart and free newspapers eyes ) and is rethinking about surgery since the hospital isn't that scary of a place now.

Post Edited (UC Wife in MD) : 11/26/2007 7:33:22 AM (GMT-7)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/20/2007 4:39 PM (GMT -7)   
omg! i had about 8 months of the "GAG REFLEX" going on.
i couldnt swallow any pill without throwing it up. it was horrible.
thats gone now thank goodness.
doctor said that gagging reflexes are associated with tummy pain. ?? weird.

it took a long time to be able to swallow anything.

i couldnt take my fish oil pills and a bunch of other things due to that.
had to get the childrens chewables.
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only. 
50mg prednisone 1x day with breakfast
50mg imuran 1x  8pm stopped it to try and have a baby
2x 500mg mesalazine 2x day + night
colifoam 1x at night
now taking calcium supps for pred side effects
VSL#3 didnt work - Aloe Elite didnt work - Budesonide 9mg day didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 11/26/2007 7:25 AM (GMT -7)   

Yeah I had gotten him the children's chewable vitamins too.

Good news is he's out of the hospital, got out on Wednesday.  But then he had a really bad episode Thursday morning where he was shivering so violently and couldn't stop.  We ended up putting him in a really hot bath and 2 hours of that (and me boiling water after the water heater drained) he stopped shaking.  After that he was fine.  I guess that must have been a reaction to all the stuff they had been pumping into him non-stop for 4 days...

So the answer to my question is Yes, if they put you on 80mg of Steriods by IV, when you get out they put you on 60mg of Predisone.

It really sucks because he was at 2.5mg trying to stop them all together when this sodium thing happened.  So now he's back at 60mg (and showing the roid rage again) and trying to taper again.

He also has the really bad water retention again and he's on a liquid restriction of 500ml a day (a deerpark water bottle).  I'm hoping his new doctor can do something about it because he can barely walk his legs are so huge.  We had to buy Big & tall socks to fit his legs.


Post Edited (UC Wife in MD) : 11/26/2007 7:36:08 AM (GMT-7)

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