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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisolone Taper and Problems


 
03-02-2017, 12:23 PM   #31
Cat-a-Tonic
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Good luck, Tony! I started getting symptoms at 6 mg so I went back up to 8 mg. I'm going to try to taper down to 7 mg tomorrow. I really hope to be off of this stuff soon too, but I don't know realistically when that's actually going to happen. I'm 37 so at this rate I'm sort of just hoping to be off of pred before I turn 40...
03-02-2017, 02:53 PM   #32
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Having similar problems, wishing you all the best. I've been tapering from 60mg (at 10mg/week) for a month now and it was going great until I hit 20mg. That was a week ago and I've been having symptoms since then. I was supposed to go down to 10mg today but messaged my doctor about it because I was worried and he said to stay on 20mg for another week, then taper by 5mg/week after that. I really hope it helps because if I can't obtain some sort of remission without steroids, my next option is probably surgery.

Anyone know at what point the swelling in your face goes away??
03-02-2017, 06:13 PM   #33
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Last time the splitting headaches hit me around the 10 or 5 mg mark as well, but I was able to get through it and taper off successfully. I'm at 30 mg now, going down 10 mg every 5 days...Hoping for the best. A little nervous because I know I tapered by 5's last time and jumping from 10 to 0 seems like a lot. Haven't been on it long this time, though. We shall see.
Wishing you all the best in your adventures with this gross but sometimes necessary evil...
03-02-2017, 07:18 PM   #34
Tony H
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Good luck, Tony! I started getting symptoms at 6 mg so I went back up to 8 mg. I'm going to try to taper down to 7 mg tomorrow. I really hope to be off of this stuff soon too, but I don't know realistically when that's actually going to happen. I'm 37 so at this rate I'm sort of just hoping to be off of pred before I turn 40...
Thanks Cat , I hope you have better luck soon , I'm nearly 57 so hopefully I will be off it by the time I'm 60 ,
I'm on 5mg from today and apart from some joint pain I am doing well , I'm seeing my surgeon on the 23rd of this month so I really want to be off pred by then .
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03-03-2017, 04:25 PM   #35
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That's great, Tony! I hope you continue to have an uneventful taper. I chickened out this morning and only tapered to 7.5 mg, will try going down to 7 in a few days. Maybe if I just taper by 0.5 mg I'll be okay. I've had issues even just trying to taper down by 1 mg at a time, so hopefully 0.5 mg is the answer for me. I hope so!

Crohner000, I don't know, but I feel for you, I hate how puffy my face is! My skin is gross too. I hate it. I've been trying a few different Korean skincare products and that seems to be helping my skin somewhat, but I don't think anything aside from coming off of the pred is going to make my chipmunk cheeks go away. And I have no idea how long it'll take once I'm finally off of the pred.
03-09-2017, 09:52 AM   #36
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Is it normal to feel like you don't care about anything while on prednisolone and tapering? I seem to not care about anything and am generally uninterested in everything. I have to say I am also in a confused state all the time
03-09-2017, 10:02 AM   #37
Tony H
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I'm down to 4mg and I'm getting a lot more output from my rectal stump , rang my GI and was told to stay at 4mg until I see my surgeon in two weeks ,apart from some joint pain I'm feeling good enough


03-09-2017, 10:07 AM   #38
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Is it normal to feel like you don't care about anything while on prednisolone and tapering? I seem to not care about anything and am generally uninterested in everything. I have to say I am also in a confused state all the time


It can certainly effect your moods and mental state. Depression is listed as a side effect and one major symptom of that in my experience is losing interest in the things you enjoy. It doesn't necessarily mean feeling sad or 'depressed' in the classic sense of the word, it can be a horrible numbness and lack of feeling. Almost like you are empty. Sometimes you can get anxiety at the same time which is just awful.

Depending on how long you are going to be on the pred for and how long you have felt that way I would mention it to your doctor.

Take care x
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03-09-2017, 05:37 PM   #39
Cat-a-Tonic
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Kancer, yes, I agree 100% with what Soph said. Pred can absolutely mess with your head big-time, and that does sound like depression to me as well. What dosage are you on right now? Things should get better as you taper down the dose. Having said that, I'm down to 7 mg (I started at 40 mg) and I still have the occasional crying fit. I can't wait to be off of pred. If you're feeling well enough to, try to do some exercise. Even if you just take a walk outside, that should help - getting some exercise and vitamin D from the sun should help alleviate the depression somewhat. It certainly does for me.
03-09-2017, 05:42 PM   #40
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Yes, following from what Cat said I have fairly severe SAD. This year I got a SAD lamp and it's made a huge difference. It's the next best thing to sunlight for me, although it does mean if I can't be bothered to go out and do things I rely on the lamp so it's a double edged sword!
03-10-2017, 08:35 AM   #41
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I am currently at 40mg and would start the taper in another 2 weeks. The exact way I can describe my feeling is I don't feel sad. I feel empty, plain, indifferent to everything. I am not sure if this is what depression feels like but I feel like I have no feelings. Really sorry if I am confusing you guys but I am confused on how I am feeling.

I am currently taking calcium and vitamin D supplements and take walks to feel relaxed.
03-10-2017, 10:19 AM   #42
Cat-a-Tonic
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That still sounds like depression to me. If you're familiar with Hyperbole and a Half, she had a 2-part entry about depression which explained it a lot better than I'm able to. She went totally numb and indifferent as well during her experience with depression. Here's the links to those posts:

Depression part 1
http://hyperboleandahalf.blogspot.co...epression.html
Depression part 2
http://hyperboleandahalf.blogspot.co...-part-two.html
03-10-2017, 11:48 AM   #43
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That still sounds like depression to me. If you're familiar with Hyperbole and a Half, she had a 2-part entry about depression which explained it a lot better than I'm able to. She went totally numb and indifferent as well during her experience with depression. Here's the links to those posts:



Depression part 1

http://hyperboleandahalf.blogspot.co...epression.html

Depression part 2

http://hyperboleandahalf.blogspot.co...-part-two.html


Wow, those are ironically quite moving. Very well written and relatable!
03-12-2017, 05:27 AM   #44
Tony H
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Gone back up to 10mg as im getting a lot of liquid , blood and urgency from down below , hopefully that will stabilise it until I see the surgeon on the 23rd .
03-12-2017, 06:05 AM   #45
ronroush7
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The best to you, Tony.

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03-13-2017, 05:13 PM   #46
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Aw, Tony, I'm sorry you've had to go back up to 10 mg, but I hope that it helps. Keep us posted on what happens on the 23rd. Are you on any other meds besides pred? Anything for maintenance?

I'm still doing okay at 7 mg. Planning to taper to 6.5 mg on Thursday. Hopefully my body will continue to be okay with me tapering by 0.5 mg per week because I don't think I can taper by any lower than that!
03-14-2017, 08:25 AM   #47
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great that you are going well Cat ,
no im not on any maintenance meds and i think thats the problem ,


03-23-2017, 04:35 PM   #48
Cat-a-Tonic
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Oh goodness, Tony, I think I'd have to agree with that. Personally, I know I need maintenance meds. I can't stay in remission without them. I was and still am on Lialda, but that by itself wasn't enough to keep me from flaring up last year, so now I've added LDN into the mix and I'm hoping that's going to be enough to keep me feeling reasonably well once I'm finally off of pred.

If it were me, I'd be asking my doctor about maintenance meds. I'm sure that from being on the forum, you have a good idea of what your options are. You don't want to come off of pred only to flare up again, so it's probably best to start looking into maintenance meds now, so that it has a chance to start working before you're fully off of pred. Just my two cents of course!

How's your taper going? As of today I tapered down to 6.5 mg (was going to taper last week but I caught a cold and decided to stay at 7 mg until I was feeling better). So far so good. I'm now tapering by 0.5 mg per week because I had too many issues when I was tapering by 1 mg per week. So it's a verrrrrrryyyyy slooooooow taper but hopefully it works and in about 13 weeks I can be done with the darn stuff already!
03-23-2017, 05:48 PM   #49
Tony H
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Hi Cat , I finally had my follow up with my surgeon today , told him about the problems I was having "down below" , and he said its not a big problem , told me the options that I had ,which really boiled down to keeping the ostomy , ostomy reversal and stump removal ,
told him I was quite happy with my stoma and would be keeping it , keeping the stump as well (with regular monitoring) for the foreseeable future ,
so he prescribed me with salofalk enemas to deal with the inflammation , as far as the pred is concerned , now that I will be taking salofalk it should help get me off the pred for good ,
Im on 10mg at the moment so I will drop it to 7.5 to start with and see how I go from there
Great that you are going well with the slow taper , hopefully you will be rid of it soon
03-23-2017, 08:30 PM   #50
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Tony,

I hope all goes well.
03-24-2017, 12:43 PM   #51
Cat-a-Tonic
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Tony, I'm glad to hear that you've got something to treat the stump, I hope it helps you get off of the pred. Good luck with the 7.5 mg taper too! I'm still doing okay at 6.5 mg. I had a headache this morning so I took some acetaminophen, but I stupidly took it on an empty stomach, and that made my stomach pretty unhappy, but other than that I'm doing okay still.
03-24-2017, 03:10 PM   #52
Tony H
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Thanks Cat , I have started today with Pentasa Suppositories as the pharmacy had not the
salofalk enemas in stock , hopefully this will be the med that will get me off the pred ,

hopefully the acetaminophen's (paracetamol ) bad effects will be short lived .
03-29-2017, 09:46 AM   #53
Tony H
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down to 7.5 mg for the last 5 days going to 5mg tomorrow ,the pentasa is helping a lot .


03-29-2017, 04:35 PM   #54
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That's great, Tony! I'm at 6.5 mg with plans to taper to 6 tomorrow. I hope the pentasa continues to help you a lot and that you can get off of the pred soon. It'll be awhile yet for me since I'm only tapering by 0.5 mg per week, but at least I'm headed in the right direction!
03-29-2017, 07:29 PM   #55
Tony H
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as long as its successful that's all that matters Cat ,


hope your taper continues to be successful Cat .
03-31-2017, 09:07 AM   #56
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Thanks Tony! I'm at 6 mg and doing well so far. I hope you continue to do well, too!
04-03-2017, 07:04 AM   #57
Tony H
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went down to 2-5 (easy to split 5mg) today still taking pentasa suppositories and inflamation in stump has reduced considerably .
04-08-2017, 06:42 AM   #58
Tony H
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down to 2mg last 3 days going ti chance 1mg tomorrow


04-08-2017, 12:16 PM   #59
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down to 2mg last 3 days going ti chance 1mg tomorrow
Wishing the best for you, Tony.

04-08-2017, 06:01 PM   #60
Tony H
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Thanks Ron I think Im finally almost free of prednisone .


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