Remicade question

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/18/2008 12:48 AM (GMT -6)   
Bratcat is scheduled for her 3rd Remicade treatment on Tuesday. She did OK with the first two. Felt better after the first one, didn't feel much of a change after the second. Not sure if they helped alot or not (they didn't make anything worse). The past couple of days she has been complaining about body aches. Not just joints. I guess muscles also. Tonight she complained about "hot flashes". She joked that she must be going through menopause (since her period is a few days late and she is very regular). She is slowly tapering prednisone each week by 5mg (we check in with the doctor every week).
Could this yucky feeling be because it is almost time for her to get her Remicade infusion? I know the prednisone is taking its toll on her.
Hopefully she will feel better by the end of the week. Her junior prom is on Thursday.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/18/2008 2:04 AM (GMT -6)   
Bennie, I never noticed it (I have musculoskeletal pain all the time), but others have talked here about joint and muscle pain when tapering Pred. I think the hot flashes could also be from that.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/18/2008 4:22 AM (GMT -6)   
There is far more chance it is the tapering of prednisone after high-dose, long term use that's causing the hot flushes and all round body pain.

This is what I found. Similar to brat-cat, I was on 60mg of prednisone for over 8 months before the tapering began. Be very careful once you get under 15mg. I am very strongly going to suggest you get the GI to agree to taper by 2 or 1mg per week from there.

Tapering under 20mg was hard for me and very uncomfortable. Tapering under 10 was excruciating. Don't be surprised if the lethargy and massive exhaustion kicks in once you get under 10mg. I'd wake up at 8am, and by 12am, I couldn't even climb the stairs to get my broken body back to bed.

After all that, my point is: "Blame the prednisone".
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 5/18/2008 7:59 AM (GMT -6)   
Thanks. Each time she is on prednisone, the side effects get worse.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 35 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/18/2008 8:17 AM (GMT -6)   
I had the same problems when i tapered pred this last time. Hot flashes were horrible. My actual temp would jump over a hundred for a few minutes. It got better as i got to about 15mg.

Hope she has a great prom!!!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


Luis
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/18/2008 7:47 PM (GMT -6)   
Hi Everyone,
I am so glad i have found this site. my husband was diagnosed with ulcerative colitis 9 years ago. To this day we have tried just about all the meds available. He is now taking Remicade but will have to increase the dose because he began having a flare up while on it. He has also been on steroids for the past 5 years. The one month he tapered off of them, he began a flare up even while on the Remicade. Has any one out there have any advice or have also been on prednisone for that length of time?

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/18/2008 9:19 PM (GMT -6)   
I was on Prednisone for most of a year, then on Entocort (which is supposed to have fewer side effects) for four years. I ended up with osteoporosis and a major fracture, avascular necrosis and had elevated blood sugar while I was on it. If he's on Remicade and still can't get off steroids, it may be time to consult with a surgeon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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