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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisolone making things worse?


03-04-2011, 09:26 PM   #1
Anna
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Prednisolone making things worse?

Hi everyone,
I have started a couple of new threads lately, so I hope it doesn't sound like I'm whining too much! I'm pretty new to all this so I tend to get freaked out as soon as any of my symptoms change!
I have been diagnosed with Crohn's since the start of Feb, but have been having symptoms from Aug last year. My symptoms are mainly abdominal pain (especially after eating), diarrhoea, nausea and general malaise.
Anyway so it was a pretty big saga to get diagnosed, but now that we finally know what I've got, I've been on Prednisolone and Mesalazine for about 1.5 months. I have noticed no significant improvement after taking these drugs. Granted, my diarrhoea became far less frequent (down to about 2 BMs per day), however this was really the one and only improvement.

I saw my gastro last Tuesday and he said "you'd better get better soon or you'll ruin my reputation," which leads me to believe that I really should have experienced some kind of improvement by now and that what is happening to me isn't really typical.
He tripled my dosage of Prednisolone to 30mg per day, which I have been taking since Wednesday (today is Sat). I still haven't noticed any improvement in bowel symptoms. On the contrary I have been feeling a lot more sick. I have been getting headaches and feeling quite dizzy. Spent most of last night checking my temperature and trying not to throw up. I was feeling slightly better this morning, but feeling crap again after eating breakfast.
Right now it's 1pm and I'm ready to go back to bed.

As well as Crohn's I'm pretty sure I also have GERD. I have been having chest pains and just recently, my throat has been hurting. Pariet has helped a little with this.

Anyway I'm just wondering whether anyone could fill me on what usually happens when you take Prednisolone. I tried to ask my gastro what I "should" be feeling if the drugs were working and he said "You'd feel better." I'm not quite sure whether that means feeling as good as pre-Crohns, or just an improvement on symptoms.

Thanks so much...
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03-05-2011, 12:41 AM   #2
bobtheman
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hey sorry i cant help much about all of the problems but i do know 30mg isnt a very high dose, so if you want to attack the problem you need to get a higher does in my opnion. the mesalamine doesnt really do much at all either, at least for me. the prednisone put me into remission during my first flare and i was taking 60mg for awhile
03-05-2011, 03:33 PM   #3
porter89xxx
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Hi i understand what you are going through right now i am also on predisolone am on 15 mg from 40mg and am starting to get back in the situation where some symptoms are coming back, when i was put on IV steriods in hospital and then come out on 40 mg of pred for a week the pain was helped and was more tolerable and it also helped the sickness alot so i take it it started to work as my food must of been able to get past the inflammation, however i am now on 15mg and on 4 tablets of pentasa and i am noticing pain around the belly button again that feels like it is nagging and pulling on my belly button and my tempreture going back up so not sure if its back. I guess you no when you start to feel better give it a couple of days and if not call your GI back up
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03-05-2011, 05:21 PM   #4
dreamintwilight
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Wow...I don't know if your doc just has a really weird sense of humor, but that would have really bothered me had my doctor said that to me! It would make me feel as if it was my fault that I wasn't getting any better. Well, if he's so worried about his reputation, maybe he should get on the ball with finding a better medication for you, since this one isn't doing its job.

I don't know your doc well, but to me, he sounds vague and unempathetic. My impression of Pentasa is that it is one of the weaker medications for treating Crohn's. It's basically an anti-inflammatory pill. And 30 mg. of Prednisolone is on the smaller side. In my opinion (and I am no doctor), if your doctor is pushing a stronger dose of Pred on you to control your inflammation rather than adjusting your dose of Pentasa or trying another stronger drug, then I would look elsewhere for medical help. I've always felt steroids should be used for short periods of time, sparingly, rather than as a maintenance med.

I hope your doc figures things out for you soon, not for his reputation's sake, but for the sake of your own health. You shouldn't have to feel so miserable. Good luck!
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Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
03-05-2011, 05:42 PM   #5
KWud
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Oh Anna, so sorry to hear you're feeling so ill. I too am on prednisolone at the moment for a flare, just increased from 30mg to 40mg yesterday as instructed by my GI. During this flare up (the last 5 weeks) I have constantly had the symptoms you describe, nausea and pain after eating and just wanting to lie down all day and extreme dizziness (difficult with two kiddies running around). I think maybe the prednisolone is contributing to these symptoms. Having said this I have started feeling much better with those symtoms over the last couple of days so maybe Anna when your body gets used to the higher dosage those symptoms will improve. I hope they do
When I took pred in the past I felt better within days but not this time, it's taking a long time and maybe that's the case for you too unfortunately
I also have acid reflux and sounds like you have too. I take ranatadine for this which helps. I have also raised the head of my bed which has helped a lot too.I'm now on a low residue diet http://www.hadleywoodhealthcare.co.u...sidue-Diet.pdf which has helped my flare up and also reduced my acid problems.

Hugs

Paula
x
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Diagnosed with Crohn's in 1995
Symptoms started 1992


Current medication:
Pentasa 3 x 1000mg granules
Azathioprine 125mg
Amitriptyline 10mg
Omeprazole 20mg
Homeopathic Remedies (when needed)
Centrum Multivitamin
Udo's Super 8 Probiotics
Codeine (when needed)
Desloratadine & Doxepin (For urticaria when needed)

Previously taken:
Prednisolone
Budesonide
03-05-2011, 08:23 PM   #6
slightlysilly
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Hey Anna... it looks like we're in the same boat! I was diagnosed in November of 2010. My doctor put me on 40mgs of prednisone, and it took care of the diarrhea completely. I still have pain in my upper right side (im thinking stomach, the GI thinks spleen) and in the terminal illume. I ALWAYS had pain there, the prednisone did nothing but take care of the diarrhea and the malaise. I think you answered my post about low cortisol, so that's where I am with the prednisone. I have an upper GI scope scheduled for this Thursday. I am PSYCHED to get this test. I cannot wait to find out what the heck that pain is.

Anyway, my understanding is that with crohns, just like different people respond to different foods. So is the same for treatments... i'm on infusion #4 of remicade and it makes me nuts that people have been having such great effects from it.. I haven't felt any improvement in pain whatsoever.

Hang in there!
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MAURA

Diagnosed with Crohn's Disease - 11/03/2010
Diagnosed with Celiac Disease 03/10/2011
Diagnosed with med induced lupus due to Remicade 01/2013
Was on Humira, didn't improve anything.


Currently on:
Cimzia
Pentasa
Buckets and buckets of Ultram and Vicodin.

Ileocolectomy scheduled for 11/18/2013



My Blog: www.gimpycolon.wordpress.com


03-06-2011, 07:50 PM   #7
e13 boy
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Wow...I don't know if your doc just has a really weird sense of humor, but that would have really bothered me had my doctor said that to me! It would make me feel as if it was my fault that I wasn't getting any better. Well, if he's so worried about his reputation, maybe he should get on the ball with finding a better medication for you, since this one isn't doing its job.

I don't know your doc well, but to me, he sounds vague and unempathetic. My impression of Pentasa is that it is one of the weaker medications for treating Crohn's. It's basically an anti-inflammatory pill. And 30 mg. of Prednisolone is on the smaller side. In my opinion (and I am no doctor), if your doctor is pushing a stronger dose of Pred on you to control your inflammation rather than adjusting your dose of Pentasa or trying another stronger drug, then I would look elsewhere for medical help. I've always felt steroids should be used for short periods of time, sparingly, rather than as a maintenance med.

I hope your doc figures things out for you soon, not for his reputation's sake, but for the sake of your own health. You shouldn't have to feel so miserable. Good luck!
Agree 100% your health is FAR more important than his 'reputation'
03-06-2011, 08:23 PM   #8
Anna
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Join Date: Feb 2011
Dreamintwilight: My gastro does have a pretty strange sense of humour, and the reputation comment was, I think, supposed to be a "joke". That said, his drug-only treatment has been pretty unsuccessful so far so I'm thinking of ditching him.

Thanks for all your support everyone! Really means a lot
The bad thing about this whole situation is that, despite the fact that I LOATHE taking the prednisolone, every doctor I've seen (even my Integrative Medicine GP) have told me that if I stop, I will end up in hospital. I know Pred is really dangerous to take long term, and I do get pretty awful side effects from it, but I feel like when doctors say things like that I don't really have a choice in the matter!

Anyone out there just told their doctors to stick it and taken their health in their own hands? I could use some inspiration here...
03-06-2011, 09:27 PM   #9
slightlysilly
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It's a tough call Anna. I really like how my GI dumbs things down for me. But, it seems strange that some items just don't get mentioned. For example, I was weaned off of prednisone at 5mg per week. I asked about it on this board and there were a few people who were concerned that the rate was too fast. Turns out it probably was. I called the GI to tell him about the cold I had (because he told me to tell him, but maybe I didn't emphasize the mind numbing fatigue I was going through) I don't know...they concentrated more on the cold than the prednisone taper.

I do know that this was the worst week health wise i've had in a while and it wasn't even Crohn's related. It was prednisone related... that stuff is no joke. I wouldn't dump your GI until you are safely weaned off the prednisone.

Good luck!!

Last edited by slightlysilly; 03-06-2011 at 09:28 PM. Reason: fix typographical error
03-20-2011, 02:32 AM   #10
Anna
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Join Date: Feb 2011
Hi Everyone,
I know it's been a while, but thought I'd give you all an update.
So after about 2 days or so of feeling awful on 30mg Prednisolone, I started to feel great! Abdominal pain, dizziness, fatigue and nausea all gone! I was feeling wonderful. This went on for about 2 weeks.
After that I called my GI to tell him that I felt better. He was very relieved and told me to start tapering down, 5mg per week and call him when I got to 20mg.

So I started taking 25mg on Wednesday (it's Sunday today) and since then all my Crohn's symptoms are returning and I feel shit again. From what I've been reading this isn't all that uncommon. Does this mean he's just going to put me back on 30mg Pred again, or are we going to have to try a different drug?
03-20-2011, 09:16 AM   #11
Astra
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Hi Anna

This happened to me too, all Hell broke lose!
We upped my Pred to 30mg and only tapered by 10mg per month!
It took nearly 11 months to do this, but I'm glad I did it, it worked and I'm now in remission.
I have no regrets, 11 months is a long time but I wouldn't hesitate to do it again, Pred saved my life and I avoided going under the knife.
This is your shout tho, do what you think is best, but also discuss it with your doc.
good luck
xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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