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He called me at 5:30pm to tell me he had gotten all my biopsies back and had a diagnosis for me from my 2nd colonoscopy done last week.
He actually diagnosed me with UC and is taking me off Entocort and putting me on Prednisone as I need something stronger. I am very torn about being on Prednisone. I want to feel better, definitely, but i am also nervous about side effects. I know it affects everyone differently and i shouldn't worry about it until it happens.
I have to call him back in a week and let him know how i am feeling on the prednisone and then we will go from there.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Ouch!! doesn't sound like the news you wanted to hear. I don't know form nothing about UC and prednisone, but I do know about discouragement and that sure happens with these gut diseases. I share your apprehension and have nohting but good wishes and hopes for you even if you ARE on pred.!! I am so glad that you have joined this forum and appreciate all your contributions.
Sunny
Bummer! I'm sorry to see that diagnosis, but it's probably accurate. At any rate, I would suspect that it would be much easier to correctly diagnose UC, that MC, due to the rather obvious markers.
I'm not sure that there will be much gain in effectiveness, though, on a practical level, by the substitution of prednisolone for budesonide.
These trials suggest that budesonide can hold it's own against prednisolone, as far as practical effectiveness is concerned, without the negative effect of reduced cortisol levels, and an elevated risk of adverse side effects. The reduction in cortisol levels, obviously introduces a risk of possible adrenal damage, that can be totally sidestepped by using budesonide. Most doctors don't seem to worry about that, because it's not their adrenals that are at risk.
Erin----I did the Pred. route along with Colazal--and as U said---and we said we all react differently to meds.--
So lets trust that U can get thru ther Pred. in good shape==
On the Pred. I was like a mexican jumping bean and was in motion all the time---cleaning---shopping for stuff I didnt need---body was in overdrive but It was the best of the worse meds. that cleared things up for me--
I wish U good luck with the Pred.
Barbara MCC'er
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Sorry to hear that pred is going to be on your plate, but if it can give you relief and wellness back then that will be a lifesaver. I do agree with Tex though that substituting one for another should give about the same results. I have not taken pred and really cannot give any insight into its effects other than what I have read.
I wish you luck and better health on it.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
I am sorry to hear about the UC. Yes, Pred. is certainly stronger then Entocort and everyone does react differently to Pred. What dosage will you be starting on? I would not worry as you said about it until you see how it affects you. One piece of advice I can give you is depending upon the dosage you start on and how you react to it, you might check to see if he could prescribe you something to help calm you down when you are on it. It was a life saver for me on 60mg of Pred-- but then again, you might have no problems with taking it as some people do not have issues while taking Pred-- also depends upon the starting dose.
One thing I can assure you is you will feel better and it will turn your situation around!! Is he going to put you on another medication for maintence as Pred is mainly used to get you out of a flare and not used long term, but rather sulfasazine and other drugs are used for maintence.
Barbara - What other side effects did you have other than the over abundance of energy (he did say it would make me feel 'jazzed up' and i would most likely have some sleep issues)?
Tex - thanks for the information on that. I will be curious to see how this works compared to the Entocort. As you said it is easier to diagnose UC than MC. He said he could tell from the colonoscopy alone that it was UC but wanted to make sure with the biopsy results as well before telling me which i thought was good of him. He does appear to be very thorough that is for sure!
Kelly - he wants to start me in the middle at 30mg. I have to call him in a week and let him know how i am feeling on that and if need be he can raise it then or leave it as it is until i can get into remission. Once the remission is achieved he is going to taper me off the prednisone and put me back on Asacol for maintenance. (i was originally put on Asacol which did help some, but not enough). What did you take to help calm you down? Did you have sleep problems too?
I know prednisone is an evil drug, but i so much want to feel better. It has been way to long being as sick as i have been
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Glad to hear that you have a diagnosis now. I was on pred. several times in the past year for sinus issues - starting with 60 mg. and tapering. It wasn't so bad - mainly just tons of extra energy, heart pounding at times, increased appetite, and insomnia - I found myself on the computer at all hours of the night! I had a feeling of well-being, too.
As long as you take it short-term, you should be fine. Good luck and let us know how it goes.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
30 mg is a good dose to start at. I know what you mean with wanting to feel better and I am so hoping this helps you feel better. I will answer your questions, but please don't let it freak you out as my body could react differently than yours (also difference in dosage). On the higher doses I was not able to sit still. First time on it I cleaned my house for over 8 hours one day. I would go through mood swings and on the higher doses became extremely agitated and irritated, kind of like I felt hundreds of marbles were going off in my body or I have drank over 6 cups of coffee. The Doctor had me take Xanax when I was on the high doses because of this, which really helped to calm my central nervous system down to where I felt more relaxed (also helped on the nights when I could not fall asleep). I could not drink coffee on the higher doses because it would make me feel more edgy and shaky.
On the lower doses I had euphoria at times or just a really happy feeling and like I was smiling and having the best day. I did have insomnia on Pred, esp. higher doses. I would not be able to fall asleep, then would fall asleep and sleep for 2-3 hours then pop back up and felt like I had slept for 10 hours, only to feel some dragging mid-day and take a nap. The insomnia started to taper when I got down to 10-5 mg.
Polly mentioned the heart pounding, which I did experience a few times. Increased appetite, especially on higher doses. Depending on how long you take it you can develop what they call "moon face", (also depends upon person) where your face looks rounder and a little swollen because Pred. causes the body to redistribute fat in different places, but this goes away when you get off of it. I had more acne develop and darker facial hair growth while on it.
I would suggest to never take it on an empty stomach because it is a very harsh drug on your stomach and can cause ulceration if taken on an empty stomach-- both pharmacist and Dr. stressed this to me and the one day I was in a rush because of an appointment and took it without eating I found out why they stressed it to me. Also found for me it was best to take it first thing in the morning because I would experience more of the energy a little while after I took it and when I did try it at night the insomnia was worse because of it. I took all of my doses at one time, but I know you can split them up during the day (not sure which your Doc. has you doing).
As Polly said you should be fine as long as it is short term. Do let us know how everything is going with it. I feel very positive you will feel better within a few days of starting it and it really is a wonderful feeling when you know you can eat something without worrying about abdominal pain and running to the bathroom afterwards!
Kelly,
Thanks for all the info on you prednisone experience. I am nervous about those side effects too and i keep telling myself they will go away when i am off of it and they are only temporary. Hard to do but i am trying!
he has me taking them all at one time, so i took all three pills with breakfast this morning. What a horrid taste they have! Yuck!
How long did it take for any of you to notice improvement once you have started the prednisone?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Yes, I know how you feel with knowing bad side effects could happen and you want to feel better, but not really looking forward to the side effects if they do. The first time I was put on Pred in December it was within 2-3 days I felt it was in full gear. I believe it was day 4 I saw the Doc. about not being able to sit still. The second time I was put on it in Jan it actually took almost a week I think for it to really kick in full gear with me. I am not a physcian, but I do think you should feel something within the first week and know that it is in your body. It was almost a shock to me from going from not being able to eat anything and constantly running to the bathroom to wanting to eat alot and not having to run to the bathroom. When you get to that point you'll say "thank goodness for Pred!". If you do get any side effects you might want to curse under your breathe and mumble some things about the drug, but really you kinda learn to ease with it and my suggestion is if it does make you feel kinda rough some days to not be hard on yourself and those days do some more for yourself and have more "me" time. I did not enjoy the irritated days, loved the days when I felt euphoria from it--- too bad I did not get those on the higher doses, lol.
One more thing I forgot-- on the days you do a taper it is normal to feel more tired. On the high doses it is producing more then your natural body would produce, so when you taper it is causing your body to kick in that little more from the gradual step down and readjust to everything that is going on.
Some people really are able to tolerate Pred with minimal side effects and I do hope you are in that catagory. Your right about the horrible taste they have-- very bitter and nasty. I am glad your Doc did the 10 mg pills, mine put me on the 20 mg and it was hilarious trying to get 2.5 mg out of that, lol. I would have to cut one in half, then half a half 2x-- it was hilarous!
Hi Erin,
Sorry to hear the diagnosis, but at least the GI doc sounds as if he is sure, and starting you on a strong treatment. I hope this works out for you, I can't imagine the suffering you have been through.
Just think, in a couple of weeks it will be spring! If the Pred works as good as many say it does, you should be able to enjoy the beautiful beginning of spring without having to worry about the big D! The weather seems to be on the verge of turning here in southern New England - maybe the nervous energy Kelly has been telling you about can be channeled into something like walks or starting a veggie garden.
(Sorry, I LOVE gardening, and can't wait... I try and convert everyone...)
Best of luck on your new treatment, please keep us posted!
Take care.
If we are peaceful, if we are happy, we can blossom like a flower, and everyone in our family, our entire society, will benefit from our peace. - Thich Nhat Hahn
I started off on the pred and had to take it for 6 weeks first 2 at a high dose than tapering off for the following 4 weeks. Some people I know of hardly get any side effects each individual is different. My experience was not a good one but, if needed I would take it again because it really took me out of one awful flare that had gone on for around 6 months before they finally give me the DX and put me on the preds Try not to think too much about the side effects right now as they may never happen, just think about getting better.
Greengirl - I know, i can't wait for Spring. I am in Southern New Hampshire (not sure where you are in Mass?) and we are finally starting to get the snow to melt. Some of my gardens i have actually seen some bulbs starting to come through!! I am making a promise to myself to keep really active outdoors this year as i did not do much last year with being sick since July. It will be nice!! How is the Entocort working for you?
Mini - I agree, i have to remember everyone is different and like you i have been in a very long flare (since July of last year) so i am getting really tired of feeling this way and at this point i will try anything that may make me feel better! Thank you for your input, i had thought you were on Pred at one point but wasn't sure.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Now, of course, the question is: Was that January diagnosis incorrect, or are you one of those rare individuals with both MC and UC, or did your MC somehow turn into UC?
I hope you're seeing some improvement by today.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
The weather seems to be on the verge of turning here in southern New England - maybe the nervous energy Kelly has been telling you about can be channeled into something like walks or starting a veggie garden. 
