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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Predinsolone, should i reduce to 25mg or listen to my body?


03-27-2016, 11:57 AM   #1
Ally1234
 
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Predinsolone, should i reduce to 25mg or listen to my body?

So I have been on pred for around 6 weeks now. Started at 40mg and reduced by 5mg every two weeks. At the beginning it worked great and my symptoms improved dramatically. I've been on 30mg for two weeks and for the last week I have had more symptoms such as stomach pain after eating, nausea and some diarreha. I don't know if this could be because of my diet (i haven't yet investigated what foods make me worse) or stress at work. Or if it's the disease being active. Anybody have any advice on whether I should continue to reduce? I expected symptoms to come back but I thought it would be at 20mg/15 mg. Also yes i will phone my doctor but I don't know if he will be available as it is bank holiday tomorrow.
03-27-2016, 12:20 PM   #2
Charlotte.
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Sorry to hear you are not feeling well. Can you check up with your nurse on Tuesday? I would not lower the dose if I were in your place before talking to your doctor or ibd nurse.
What do you take apart from the pred? Do you have chronically active Crohn's or just flare-ups and no symptoms in between normally?
Have you had a gastroscopy being done recently?
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
03-27-2016, 12:30 PM   #3
Ally1234
 
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I can call the nurse on tuesday. I am also on pentasa 2g 2 x a day. As well as omeprazole and calcium, but I think these are for the side effects of the steroids rather than treatment of the disease itself? This is my first does of steroids as I was recently diagnosed with crohns and admitted to hospital in February for 5 nights (after sigmoidoscopy showed bad inflammation) so this is my first attempt at getting my disease under control.

Last edited by Ally1234; 03-27-2016 at 01:02 PM.
03-27-2016, 01:49 PM   #4
Charlotte.
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As it is your first course of treatment, you should definitely contact the nurse. If your Crohn's is chronically active, it would always flare up again when you decrease the dosage of pred, same happened to me. So if that is the case, you would require a long term drug to keep inflammation down and prevent you from having constant flare-ups. Do you have Crohn's or UC? Where is your Crohn's located? Pentasa normally is most effective in the colon, as far as I know.
Calcium is important to avoid osteopenia/osteoporosis, PPI's (if you don't have gastritis, stomach ulcers etc.) help protecting the stomach lining by decreasing the gastric acid production.
Hope you start feeling better again soon! It's such a relief feeling better, even for a few days, and knowing what is going on, isn't it? Pred is such an effective and powerful drug, I still remember my first course of pred, felt super good after years of symptoms. :-)
03-27-2016, 01:52 PM   #5
Justanothercp
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I'd stay on higher dose until you contact MD. When I was weaning, I often had to change the plan and sometimes did any every other day drop in dose, or even got 1mg pills and dropped as slow as 1mg at a time. Sorry to say, I never did wean all the way off, I needed bowel resection.
03-27-2016, 02:12 PM   #6
Ally1234
 
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They said I have crohns, i think it is in my sigmoid colon, i had a sigmoidoscopy which only goes a short way in but they couldn't give me a colonoscopy as my inflammation was too high and it would have been dangerous. I am not sure when they will schedule this but I have an appointment on the 19th April and I expect he will discuss it then. They also already gave me leaflets about azathioprine and another drug I can't remember, so I think they are already thinking ahead for a long term drug as they said I could be on them for up to 5 years. Fortunately I seem to have a good team of doctors it's just hard when you think you are coming to terms with the disease and seeing improvements and then you have to take two steps backwards. Realising this is going to be a long journey and i need to listen to my body and my feelings.

03-27-2016, 10:55 PM   #7
ronroush7
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Stay ehrtr you are and talk to your doctor Tuesday.
03-27-2016, 10:58 PM   #8
ronroush7
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I meant stay on your current dosage and contact your doctor Tuesday.
03-27-2016, 11:48 PM   #9
tots
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I finally had to go with a lower starting does and a very very slow taper.
When I would start on a higher does and a "quick" taper like you are I would
be sick again within three weeks.

Listen to your body and called your Dr. You are your own best advocate!

Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
03-28-2016, 12:17 AM   #10
Jennifer
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Keep in mind that you were prescribed a certain amount of medication so a main concern would be possibly running out of medication if you don't stick to the taper schedule. What you could do is lower the dose as prescribed and alter your diet to a low residue diet or possibly even a liquid diet if your symptoms are extreme. It's very common for symptoms to return during a taper so that's why doctors will prescribe a maintenance medication before your taper or at least at the very beginning of the taper to try and give time for the other medication to start working. I would advise talking to your doctor or IBD nurse first before making a decision. If you choose to stay on your current dose then inform them right away so you can make sure that you get enough medication for the rest of your taper.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-28-2016, 03:42 AM   #11
Ally1234
 
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Thanks for all the comments guys. I am supposed to be going down on the medication today but will stay on the same until i speak to the IBD nurse tomorrow. I will run out of medication before I see my doctor regardless as they changed my taper at the beginning from reducing 5mg every week to reducing 5mg every 2 weeks but I can contact my GP and they should be able to give me more tablets. Also I will look into the low residue diet. None of my doctors seemed concerned at all with diet and so I haven't made any changes but I have seen alot of people on here who have trigger foods so I think it is something I should start looking into.

03-30-2016, 02:16 PM   #12
Ally1234
 
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Update, incase it helps anyone browsing these forums.

Spoke to my IBD nurse today, he confirmed it okay to stay on 30mg for an extra week. He wants me to try 25mg on Monday and he will phone me for an update on tuesday. He says if i still don't feel well they might have to start me on azathioprine before my next appointment which is 19th April. My bowel movements are okay at the moment but the stomach and back pain and the tiredness are really getting to me

03-30-2016, 02:42 PM   #13
ronroush7
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I finally had to go with a lower starting does and a very very slow taper.
When I would start on a higher does and a "quick" taper like you are I would
be sick again within three weeks.

Listen to your body and called your Dr. You are your own best advocate!

Lauren
I ągree

04-02-2016, 03:33 AM   #14
Jennifer
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Keep us posted with how you're feeling Ally1234. *HUGS*
04-19-2016, 03:18 PM   #15
Ally1234
 
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Had clinic today with my specialist and also my IBD nurse. They said that since my symptoms are still bad I should start on azathioprine 175mg so tomorrow I am going to pick up the prescription and also get some blood tests before I start. They put my prednisolone back up to 40mg and I will be tapering 5mg a week. I'm due back in clinic in 8 weeks by which time fingers crossed I will be off of prednisolone and the azathioprine will be working. If not they are already talking about humira or inflectra. I'm not sure how I feel about going up the levels of medicine so quickly. They are also going to send me for an MRI within the next 8 weeks. I also need a colonoscopy but they don't want to book that until my symptoms are better, so are waiting to see how the azathioprine works. I guess only time will tell what happens next.

04-19-2016, 03:24 PM   #16
ronroush7
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Hoping the best got you

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