Side effects with Preds

[sandramaggie]

Hi, my 15 yr old daughter is on a prednisone 60g daily - until tomorrow when we start dropping 5g per week. Last night she was complaining of really bad pain near her breastbone which radiated around her back. After doing a bit of research about possible side effects think this must be acid reflux. It really scared her as she asked me to sleep with her. The pain lasted for many hours. I found it pretty scary as wasn't 100% it was acid reflux. Has anyone else had any experience of this. With her having crohns you always wonder if the symptoms are of anythnig more serious. She goes for her MRI scan on Monday so will know more then about how things are - feel quite scared about that as well -

 

[crohnsinct]

AW Sandramaggie...so sorry. I don't know if what you are describing is acid reflux but when on Prednisone our GI prescribes Prevacid for the stomach so maybe you are on to something.

Hope things turn around and that all goes well Monday.

 

[sandramaggie]

Thanks for getting back to me - Amy is taking Omeprazole 20mg per day - just read the leaflet (doh!) and it says that if that is not enough the doctor can increase tlhe doasge to 40mg per day. She is okay this morning so will monitor what she is eating and see if that brings it on. Just scary at the time.

 

[Farmwife]

Sorry to here about her pain. The only thing I can add is perhaps it the gullbladder. I'm having this SAME issue. For years I thought it was an ulcer. Last week I had an attack like no other. Went to ER and to my shock the ultra-sound showed gull stones. They said if the pain travels to the back and or under the right sholder blade it's the gullbladder!!!!

Just a thought to keep in mind.
Farmwife

 

[Sascot]

Sorry I don't know what it is - but I agree it would be worth getting her gallbladder checked! Hope she is feeling better soon - or even better that the pain doesn't happen again!

 

[sandramaggie]

Thanks Farmwife and Sascott- she seems ok today so fingers crossed -hope its not the gall bladder - heard that it is extremely painful -

 

[DustyKat]

It isn't uncommon to have stomach issues when taking Pred and 60mg is a big dose. It might be an idea to up the Omeprazole anyway???

The other thing to watch for with pain that extends through to the back is pancreatitis.

I so hope things stay settled for your daughter, bless her. :hug:

Keep us posted!

Dusty. xxx

 

[sandramaggie]

Thanks for that Dusty - she says her hips hurt - not really mentioned back - MRI on Monday - doctors on Tuesday - at least we are now reducing the doasage of pred - down to 55mg this week =

 

[Farmwife]

:bigwave:I hope the test and appointment goes well. Keep us posted.
Farmwife

 

[DustyKat]

I hope all goes well with the test, appointment and taper!

:goodluck::goodluck::goodluck:

Thinking of you, :heart:
Dusty. xxx

 

[Sascot]

Good luck with the appointment. Will keep an eye out to see how it goes!

 

[sandramaggie]

Thank you all for all your support and best wishes - it really does help when you fee it all dragging you down
l

 

[izzi'smom]

JUst wishing you well with your appointment...and hoping for no more pain!

 

[sandramaggie]

thank you so much - it is just the unknown isn't it - maybe when we have a clearer idea of what we are dealing with it might make it better - I don't know - but I wish you and your daughter all the very best x

 

[Kelly2]

Sandramaggie - how did the tests go? How is the tapering off of Prednisone coming along? What dosage is she on now?

Was just thinkink about you and your daugher

 

[AZMOM]

Thinking of you all. Just my two cents, when Claire was On a high dose of pred, the Prilosec didn't do the job. She would say "my chest hurts" and hold her sternum. Anyway, doc switched her to nexxium. It worked better for us. So if increased Prilosec (omeprazole) doesn't get it, ask about one of the others....

Huge,

J.

 

[Tesscorm]

Nice to see you around!

How is Claire? All is good??

 

[SherylZellis]

hi
You have me really curious now. My son is 11 with CD. He is on 60 mg pred since last week dueto uncontrollable diarrhea. He complains of dry heaves and chest pain. he is on Prilosec 20mg 2x/day. Sounds similar. He's miserable...
Sheryl

 

[AZMOM]

Hi tesscom. I won't hijack the thread but we are hanging in. We're at the beach on vacation right now. Claire's fecal calprotectin numbers are still sky high, intermittent bleeding but feels pretty good and CBC is good. So I'm in Carpe Diem mode.....taking it one day at a time......

Hugs,

J.

 

[sandramaggie]

Hi everybody - sorry haen't been in touch - busy on Monday with street party for the Queens Jubilee and went away for a couple of nights on Tuesday - just got back.
The MRI went fine but no result yet - When Amy first went into hospital I was told she would get an appointment through to see the consultant within 4 weeks - this never happened and so had to ring them and fingers crossed they sort that out for us.
The tapering is going fine - tomorrow we drop to 45mg - but she now has the 'moon' face and is putting weight on like crazy but she never stops eating - always has terrible hunger - I am not sure if it is that which is making her really grumpy at times or the effects of the drugs. She is still not sleeping well and although going to school for a couple of lessons a day it is really hard work. How does everyone else manage - do your children manage to go to school whilst on the high dosage.

I have been trying to sort out home tuition with the education authority but keep banging my head against a brick wall.

Also wondered - what is going to happen when she comes of the steroids - is this just an unknown until we do it?

best wishes to you all - x

 

[Sascot]

I know what it's like trying to keep on top of appointments,etc. I had a nightmare trying to get to the surgeon in Glasgow. Just keep phoning if you don't hear anything!! Sorry no experience with Pred so not sure about that.
I understand what it's like with the schools. For a while my son was off more than he was there and missed a bunch. There doesn't seem to be much of a system in place in UK - depends on the council. Ours only kicks in after about 4 weeks off and then you only get 3 hours of home tutoring a week - quite rubbish. I had to go into the school and explain what was happening (I think alot of his teachers felt sorry for him) as he was getting no work home. Now we have a system in place that I email his form teacher and she contacts the rest of the teachers who then give her a list. She then emails me or leaves stuff at the front desk. Good luck with it all.

 

[sandramaggie]

Thanks for that - the school do send some work home but she needs some teacher input for some subjects - I just get so frustrated as she is doing some of her GCSEs at the minute and has missed so much - her grades won't be what she could achieve - also they make such a fuss if you take them out of school for a day but are quite happy to let them not have an education because they can't do a full day or even not a day depending on thier illness -

sorry spouting off but I could scream with the unjustness of it!