Tapered Prednisone, now I feeling terrible.

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Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 2/18/2008 5:20 AM (GMT -7)   
Hi Everyone,
I have been on 60mg of Prednisone for about 45 days, last thursday I tapered to 40mg, and that is when all began, lot of D, with boold and mucus, besides everything that I eat gives me a terrible pain and I ended up vomiting, even liquids, I am having those terrible cramps in the low right quadrant, I even had to go to ER because of the pain, they gave Tramadal, which helped a little, but I am still on pain, I do no eat pratically nothing since thursday. Besides all that the joint pains backed and now I am havin this morbid tiredness...
I called my GI, she said to back to 60mg of Pred, but still nothing.
I do not know what to do, I am new on this disease, DX in Nov 2007.
I am a little scared, Help me guys!

Veronica Nunes - 27 years - Brazil


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/18/2008 8:48 AM (GMT -7)   

I am not an expert but I just wanted to say I am sorry your taper caused a flare. this happened to me too and it took me a while to get better. I would call the doctor and let him know. Maybe he will have a suggestion.

Hope you feel better soon..

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 2/18/2008 8:57 AM (GMT -7)   
Is the doctor treating you with anything besides Prednisone? Have they taken blood tests to see what's going on? Have they tested your stools to see if there is an infection? Did they do a CT scan or x-rays for an obstruction? These are some of the questions you may want to ask your doctor. I recently had Salmonella food poisioning with horrible cramps, pain and diarrhea. I, along with my doc thought it was an exacerbation of the Crohn's, and it took a month before the doc finally took a stool sample and figured it out. Another idea I have is for you to try a course of Flagyl which may help inflammation and bacterial overgrowth even if your stool tests are normal. Don't assume that this is how sick people are with Crohn's...something is wrong and you need to figure it out. Good luck and let us know how you are.
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


Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 2/18/2008 9:41 AM (GMT -7)   
I am taking pentasa too, but I do not think it is working, about my blood tests, they are bad, The protein C is heigh so as the WBC and plaquettes and sed rate, I did a Ct scan about 3 weeks ago, and was everything normal, I do not believe that could it be something I have eaten, since my diet is very restricted.

I was taking Flagyl with the prednisone when the GI decided to taper, because she wants me to start on Azatioprine in about a month.
Is it normal feeling so tired, I get tired even to take a bath...
Veronica Nunes - 27 years - Brazil


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/18/2008 2:12 PM (GMT -7)   

I'm sorry you are feeling so bad. Does the GI think you have a stricture? That could help explain the nausea and vomiting.

60 mg for 45 days is an unusually high dose for such a long time. Usually 60 mg is given for a few days to a week to stop a flare, and then tapered by about 5 or 10 mg a week until you get down to 20 mg. And then even slower, perhaps 2.5 or 5 mg a week after that. There IS such a thing as a rebound reaction to steroid withdrawal...when you are on a steroid and try to get off it too fast, it can induce a flare. Did you suddenly drop down by 15 mg from 60 mg to 45 mg, or was it more gradual?

For right now, the flare must be stopped. Are you getting prednisone via an IV? The dosage might have to be increased for a few days. Can you keep any liquids down? If not, then you probably need to go to ER and get IV hydration. We can't tell how tired you are...you could be dehydrated, anemic, low on B12...almost anything. The important thing is, if you really can't eat or drink anything for more than a day, then you probably need to go to ER. Because you are in danger of getting dehydrated and at nutritional risk.

Pentasa is useless for most people...the full dose of Pentasa is 4 grams...if you are taking that much and still flared then you might as well stop taking it, because no medicine is entirely safe. Same goes for Flagyl. 

Your GI is wise to consider Imuran (azathioprine). Is your Crohn's in the terminal ileum, only, or is it in other places, too...the reason I ask is because Entocort works for many people, but  only in the terminal ileum.  

Meanwhile, hang in there! It can be really scarey at times, but at least prednisone worked for you before, so I'm hoping it will work for you again.


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 2/18/2008 2:35 PM (GMT -7)   

Every time I came off steroids my muscles rebelled, my body was weak and I ached everywhere.

Recently when I switched to the makers diet, starting 4th week now, I gave up the steroids and pentassa and the others.

It has been brutal detoxing.

now though, in the 4th week I am starting to feel better, my body is getting stronger and my mucsles ache much less 90% of my other symptoms are gone, D, blood, pain, throwing up, etc.

I ahd a horrible week in January where I was throwing up all week, turned out to be h-pylori. That to is gone now.

 

hope you find the answer soon :)

 


Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 2/18/2008 3:05 PM (GMT -7)   
njmom said...

I'm sorry you are feeling so bad. Does the GI think you have a stricture? That could help explain the nausea and vomiting.

60 mg for 45 days is an unusually high dose for such a long time. Usually 60 mg is given for a few days to a week to stop a flare, and then tapered by about 5 or 10 mg a week until you get down to 20 mg. And then even slower, perhaps 2.5 or 5 mg a week after that. There IS such a thing as a rebound reaction to steroid withdrawal...when you are on a steroid and try to get off it too fast, it can induce a flare. Did you suddenly drop down by 15 mg from 60 mg to 45 mg, or was it more gradual?

For right now, the flare must be stopped. Are you getting prednisone via an IV? The dosage might have to be increased for a few days. Can you keep any liquids down? If not, then you probably need to go to ER and get IV hydration. We can't tell how tired you are...you could be dehydrated, anemic, low on B12...almost anything. The important thing is, if you really can't eat or drink anything for more than a day, then you probably need to go to ER. Because you are in danger of getting dehydrated and at nutritional risk.

Pentasa is useless for most people...the full dose of Pentasa is 4 grams...if you are taking that much and still flared then you might as well stop taking it, because no medicine is entirely safe. Same goes for Flagyl. 

Your GI is wise to consider Imuran (azathioprine). Is your Crohn's in the terminal ileum, only, or is it in other places, too...the reason I ask is because Entocort works for many people, but  only in the terminal ileum.  

Meanwhile, hang in there! It can be really scarey at times, but at least prednisone worked for you before, so I'm hoping it will work for you again.

So njmon, I tapered from 60 to 40 in 1 day, that is what the doctor told me to do, Tomorrow I am going to the hospital, probably I am going to spend some days there, but if it is to get better no problem. I even feel safer there then alone at home.
I spent 10 days in hospital at the end of january, taking steroyds, cipro and flafyl IV, I was feeling very very good, then I tapered the pred and all come back in double!
My Crohn is in terminal ileum and in the colon too.
The CT scan did not show any stricture, at least that is what the doctor said, but there is have  to be a reason for al this pain, vomiting, Ds and fatigue...I do not know anybody, personally, that has this disease, sometimes I feel I am the only person that the treatment does not work, and people start looking at you as a Drama Queen! This is so annoying.

Veronica Nunes - 27 years - Brazil


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/18/2008 3:24 PM (GMT -7)   
60 to 40 mgs in one day? wow. I was on prednisone for 18 years and that sounds very fast to me--a real shock to the system. I always lowered by 2.5 to 5 mgs every 3-5 days. Maybe time for a second opinion? I'm sorry you are feeling so horrible and hope you are able to take in some liquids and that your pain lessens. I will think of you.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/18/2008 9:27 PM (GMT -7)   
Veronica, to taper from 60 mg to 45 mg in only one day can be OK if you were on 60 mg prednisone for only a few days.
 
But probably not if you were on 60 mg prednisone for more than a month. After the flare is well under control, you could try tapering much slower.
 
Hope you feel much better tomorrow! Be sure to keep us posted:)

Trsora1
Regular Member


Date Joined Nov 2007
Total Posts : 111
   Posted 2/19/2008 12:36 PM (GMT -7)   
the taper was way to fast. Have to try in 5mg. You will feel very crappy from the flare and the coming off steriods too fast.

tenbaseg
Regular Member


Date Joined Aug 2005
Total Posts : 32
   Posted 2/19/2008 1:45 PM (GMT -7)   
+1. Too fast in my opinion.

Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 2/19/2008 2:07 PM (GMT -7)   
Hi Everyone, I had to come to the hospital, I will be here for a few days, will to a lot os exams, hope I will get better.
Thanks everyone
Veronica Nunes - 27 years - Brazil


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/19/2008 2:39 PM (GMT -7)   
I would like to caution our American friends against criticising the treatment received by a forum member in another country. Medical treatments differ between countries; what seems "wrong" in one country may be perfectly acceptable in another. And as we're not doctors, I think we should be especially cautious about portraying certain drugs as "useless".

I'm not convinced it's helpful to erode a member's faith in her doctors and treatments, especially if she is newly diagnosed.

Ivy.
Co-Moderator Crohn's Forum.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/19/2008 3:31 PM (GMT -7)   
Veronica - I tend to agree about tapering from 60 mg. to 40 mg. Maybe you should try to taper slowly.

And you say your diet is strict (most people with CD have a strict diet), but sometimes we still eat the wrong things without knowing it is exasperating our symptoms. Like all sugar products, processed food, and food with chemicals. Have you tried cutting these out of your diet? Dairy can also be troublesome, as you may know.

I also suggest you look into the Maker's Diet. It has helped me and many of us here. Hey, I felt desperate enough to try it and am glad I did.


ivy6 - I don't think this has anything to do with where anyone is from.
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