ok now after celebrating i have to admit defeat :(

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bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 1/3/2008 4:13 PM (GMT -7)   
i was celebrating coming off of the prednisone but ive been denying to myself that im having symptoms again. since thanksgiving its all coming back. 4-6 bm's a day pretty much every time i eat with the feeling like im going to pass out, LRQ pain, joint pain, nauseas everytime i eat, and mouth sores. i dont know why i was not letting myself see what was going on but today i sat down and really thought about it. once i hit 10mg of pred it all started up. i was just so happy to get off that evil drug i didnt want to see it. at first i wanted to think it was becasue of my remicade coming up but im still 5 weeks away and i dont think that is it really. it just upsets me and makes me angry. i felt so good for the 5 months i was on pred now why cant it last, why cant the stupid remicade work. im going back on my baby food diet to see if it helps but i really think its back. i admit it now to myself, i just didnt want to go through this again. and i DONT want to go back on prednisone its is ruining my body, i have osteopenia i gained so much weight and i cant sleep and i get awful headaches.

oh well sad

thank you for listening, i had to tell someone who understands,

bunny
Crohn's Disease Diagnosed 12/24/03
Bipolar






Im 26 years old, and am currently only taking remicade and protonix for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.

Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.



"We are all worms but I do believe i am a Gloworm"

^always makes me smile^

<FONT color=#00ffff>




<FONT color=orange>


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/3/2008 4:19 PM (GMT -7)   
I am so sorry, I DO inderstand,I HATE Prednisone!!!! It works,but OMG,what terrible things it does!!! My scope is next week,and if my GI puts me back on it,I will have a meltdown.

Hang in there :-)

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/3/2008 4:22 PM (GMT -7)   
I'm so sorry. I am right there with you. I have been tapering for a year and I keep having to go back up and ease myself down again. I understand all the evils of prednisone and I'm sending you (((hugs))). Been there, done that, too many times.

Maybe you can just go up a little and taper more slowly to give your body more time to heal.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 1/3/2008 9:36 PM (GMT -7)   
I had a whole three weeks of remission after I tapered off prednisone, and now I'm in a full blown flare and back on the evil drug. this disease sucks!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


fan4iu
New Member


Date Joined Dec 2007
Total Posts : 8
   Posted 1/3/2008 9:43 PM (GMT -7)   
I'm sorry to hear that, too.  I took my last dose of prednisone yesterday.  Last time I went off, in August, I started having symptoms at 10 mg too.  I so feel for you!  I denied my symptoms until October, when I finally called in, and got put back on Pred, along with Imuran.  Hopefully the Imuran is working, because I've got no symptoms yet!  Except for a headache and nausea  just today...could that be from going off the pred? 
GRRRRRR I hate this medicine!  I am so looking forward to losing some weight now, since I've gained 30 pounds since July!!!!!!!

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/3/2008 9:49 PM (GMT -7)   
I am sorry and I know how you feel.  I have managed to go 6 years without Prednisone, and now am back on it and tapering, scared of what the result may be.  I hate taking it, I feel like a maniac, I can't sleep or have these outrageous, exhausting dreams.  I ate pretty much everything in my kitchen today and now feel like I am going to explode.  Sorry, I know it sucks and I hope you can get by without it somehow.

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain, Glucosamine 500 mgs, Vitamin B


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/4/2008 7:55 AM (GMT -7)   
Have you tried Entocort? It too is a steroid but has less side effects. Also maybe you need to talk to your GI about upping your Remicade. Maybe getting it a little more frequently than you have been. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 1/4/2008 10:57 AM (GMT -7)   
yeah i dont sleep at all. none of the meds i have tried for sleep work for me so im kinda stuck and my primary said that this one (rozerem) is the last one shes going to perscribe for me.

i was on entocort awhile back after my first round of pred, then i have been only on remicade until this last episode with the prednisone. my doc has doubled the dose of my remicade and i have had 4 infusions so far, i think enough to at least have an effect. oh well, i see him next week so we shall see what he says.

thanks guys


bunny
Crohn's Disease Diagnosed 12/24/03 and Bipolar
[color=black>Probable]

Im 26 years old, and am currently only taking remicade and protonix for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.

<FONT color=#00ffff>

<FONT color=orange>


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 1/4/2008 11:17 AM (GMT -7)   
Yeppers. It took me over a bloody year of trying to get below 5 mg of Pred, before I finally succeeded. I hate the stuff. But I hate our DD more!

Sincerely,
Matthew

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/4/2008 1:35 PM (GMT -7)   
bunnypucker said...
i was celebrating coming off of the prednisone but ive been denying to myself that im having symptoms again. since thanksgiving its all coming back. 4-6 bm's a day pretty much every time i eat with the feeling like im going to pass out, LRQ pain, joint pain, nauseas everytime i eat, and mouth sores. i dont know why i was not letting myself see what was going on but today i sat down and really thought about it. once i hit 10mg of pred it all started up. i was just so happy to get off that evil drug i didnt want to see it. at first i wanted to think it was becasue of my remicade coming up but im still 5 weeks away and i dont think that is it really. it just upsets me and makes me angry. i felt so good for the 5 months i was on pred now why cant it last, why cant the stupid remicade work. im going back on my baby food diet to see if it helps but i really think its back. i admit it now to myself, i just didnt want to go through this again. and i DONT want to go back on prednisone its is ruining my body, i have osteopenia i gained so much weight and i cant sleep and i get awful headaches.

oh well sad

thank you for listening, i had to tell someone who understands,

bunny

bunny,

Being I have had so many food allergies all my life, and was diagnosed with Celiac Disease a few years ago, I always tend to think in terms of food allergies. Sorry, I'm new here and don't know your background, but do you have food allergies or think you do? What kinds of things do you eat typically? When I was diagnosed with the Celiac Disease, I was going 7-8 times a day. That went away after the gluten was eliminated from my diet. The Crohn's is a new thing for me. I'm better than I was just a few months ago. Again, more dietary modifications have helped (used to eat popcorn and things like that, which in retrospect, were terrible for me.)

Just a thought!

-Mike
Type I Diabetes- 28 yrs. (MiniMed Insulin Pump)
Celiac Disease- 6 yrs.
Crohn's Disease- 1+ year (Nov. '06)


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 1/4/2008 4:13 PM (GMT -7)   
when i first was dx'ed with crohns i thought they did some test for celiac and said i didnt have it. i dont remember what it was, or i could be just remembering the doc saying he didnt think i had it. ive never had any food allergies and just some foods bother me now with the CD

thanks for the info :)


bunny
Crohn's Disease Diagnosed 12/24/03 and Bipolar[color=cyan>]

Im 26 years old, and am currently only taking remicade and protonix for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.

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