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Update after starting Prednisone

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Posted 9/6/2011 9:33 PM (GMT 0)
Just wanted to give a little update.

I was complaining just a week or two ago about being prescribed Prednisone. My Dr. prescribed it as a pre-curser to Imuran. This was my first time being prescribed the Pred (he prescribed it back in May).

Well, I finally worked up the courage, with my husband's support, to take the stuff on Saturday morning before a boat outing, which had me in knots all day long.

I really started to notice the effects on Monday and I have to say that I am really thankful I took it. Even if I do get some poor side effects, this is the first time in years (literally) that I have had the perspective to see how badly I had been feeling and how lethargic and anxiety-ridden I had become. I am enjoying this energy (some of which I know is from the med, some I think from not feeling feverish or having D all morning).

So - I am tapering down on Saturday and then onwards for the next five weeks when I see the Dr. again. I hope the pred. continues to work even after I taper down, though I know many have had problems.

Just wanted to share.

btw- I started at 40mgs and am decreasing by 10mgs until the last two weeks where it's by 5 and then .5 mgs (I think I got that right). I also take Lialda and the Dr. said to continue it during the Pred (?). I am suspicious of the Lialda but I'll have to see what happens when I finish this month.
Posted 9/6/2011 10:16 PM (GMT 0)
The lialda is just like aspirin with a special coating that keeps it from dissolving before it gets to your colon. It was very beneficial to me, but I never stopped taking it until I was healed with Remicade. It's meant to be a maintenance drug, to keep inflammation down. Usually very mild, rarely has side effects.

Prednisone sucks but it works. Taper as you are doing better, not just by a pre-set schedule, is my advice. I was able to know what dose I needed, after so many years.
Posted 9/7/2011 12:11 AM (GMT 0)
peety, are you still on remicade now?
Posted 9/7/2011 4:49 PM (GMT 0)
You bet, I would not risk going back and I have had no bad effects whatsoever. I went off asacol and have never needed to take predisone again.

I am only still affected by what my doc calls "iron pipe colon" from scar tissue after so many years of disease, which affects how a good a job my colon does at getting water out of my poo.
Posted 9/7/2011 6:57 PM (GMT 0)
Thanks for the response Peety. The only thing I haven't seen with this Prednisone is normal looking stool and being able to have a BM without bad, cramping, pain.

I don't know if I'll ever have a normal BM again, but a girl can wish =) Anyone else just stuck forever with completely unformed stool? Is that normal for UC or is there a way to ever get back to normal-people BM's?
Posted 9/7/2011 9:04 PM (GMT 0)
I often wonder the same thing myself. I haven't had a formed stool since February. shakehead Will it ever happen again?
Posted 9/8/2011 1:45 AM (GMT 0)
I am jealous when I see the nice solid tootsie rolls my cat can put in the litter box.
Maybe I should be eating cat food...
Posted 9/8/2011 4:01 AM (GMT 0)
I was in remission for a little over a year and never had normal BMs I eventually got used to it and can be thankful that its not hard to go LoL In the first stages of my flares is sever constipation where it just cant get through. Its there, and buring wanting out, causing all kinds of bubbles and grumbles and cramps but it is blocked in. So, I am thankful that it can just come out when im not inflamed!
Posted 9/29/2011 8:15 PM (GMT 0)
Just bumping this back up with a question.

I have been cycling for over a month now - we live around hills so it's a pretty good workout. I've been doing really well with it in that I can make it up hills now that I had to walk up a couple of weeks ago.

Yesterday I pushed myself a bit harder - I think I added an extra hill or two. It didn't seem like that much more work. I also worked for 2.5 hours in a nursery yesterday - lots of up and down onto my knees to play, pick up kids, etc. Did lots of up and down stairs too...

So today - my second day at 20mgs of Pred - I feel AWFUL. I have had success with the Pred and the tapering the past few weeks. Today though, my legs feel like lead - just horribly sore and oddest of all is this horrible lower back pain. I could barely walk this morning - it just kicked in as I was sweeping the floor (weird! almost made me faint!). I don't have a fever but I am just exhausted all over and aching all over.

Is this from the Pred or did I push myself too hard without knowing it? I feel soooo out of it!!
Posted 9/29/2011 8:21 PM (GMT 0)
Could be a combination of both...pred is such a tricky thing, the very first time I was on it I felt this amazing surge of energy that lasted until I started getting down to 20mg for the week. Then as it slowly comes out of your system, it's like you were never on it (my experiance) back to all the symptoms.

It's great that you've been out there and keeping fit, definitely stick with it but just tone it down a bit. It's important for your energy levels to exercise daily even if it's light exercise, pilates, yoga (which you can make as easy or extream to suite your needs) but something is ALWAYS better than nothing at all.
Posted 9/30/2011 3:22 AM (GMT 0)
Tillie - I also am taking pred as a precursor to Imuran.. I believe I am about 20 days in on my Imuran already but I am stuck on 20 mgs of pred for a month! Consider yourself lucky! Anyway, I was also told to continue my Lialda, however my GI bumped it up to 4 1.2 mg/day from 2 1.2 mg/day. I also asked if I would taper down from this and he said no.... and that I would likely be on it the rest of my life. The explanation he gave me is that it promotes healthy colon cell growth. Is this what everyone else had heard?

PS. I'm the newbie that hasn't been happy with my GI doc since my flare and Imuran rx and I finally found a new doctor in Hershey that I'm super excited to see and get a different perspective on the whole topic. Just wanted to see what you guys have also heard about with the Lialda.
Posted 9/30/2011 4:36 AM (GMT 0)
I know I had my symptoms creep back up as I tapered at 20mg, and I think its pretty common unfortunately. I was stuck at 20mg and then back up to 30mg for over a month and just starting now to taper even more slowly, 2.5 mgs a week and its finally(hopefuly) working.

Maybe stay where you are at until your symptoms calm down, though they don't really sounds like overly UC symptoms, your body must just be mad its being denied its pred. I read an article somewhere online that said when you are tapering pred and you are at 20mg, that's when your body starts to try and take over with its own natural prednisone, so it makes sense that your body is unhappy right now. Sorry to hear it though, its such a letdown when your body won't let go of prednisone...
Posted 9/30/2011 2:17 PM (GMT 0)
See thats my thing, I don't have any symptoms right now. I have been D & blood free since the end of July. What I want to do is go down 2.5 mg/week with my dr and he doesn't like it. I honestly am tempted to try it. The only symptom I am having right now is that I am extremely bloated, but I don't think that is related to the pred - I think my double dosage of Lialda that I started or possibly the Imuran? Both are new and not as bad as they were a week ago. I don't think the 2.5 mg/week should be unheard of. He actually wants me down 5mg/week after I've been on it a month. THATS what i'm scared of. I think he just wants to see me go even crazier on this pred.
Posted 9/30/2011 2:44 PM (GMT 0)

Peety said...
You bet, I would not risk going back and I have had no bad effects whatsoever. I went off asacol and have never needed to take predisone again.

I am only still affected by what my doc calls "iron pipe colon" from scar tissue after so many years of disease, which affects how a good a job my colon does at getting water out of my poo.

Same thing. After seeing my colon my new GI doc understood why so much fiber helped me, lol. Sucks up all that extra fluid.
Posted 9/30/2011 7:47 PM (GMT 0)
Bloating is indeed related to pred. Also, Till,y have you had the pain still related to the bowel movement. That could be rectal inflammation, the last part of these flares to heal. Are you on rectal mesalamine enemas (Rowasa). Amazing stuff for healing the rectum. These orals don't shoot the medicine down low enough so going up with rectals helps that. If the inflammation is still real low, suppositories (Canasa) are good. This regime helped me get off prednisone with no incident except length of time on the taper.
Posted 9/30/2011 10:44 PM (GMT 0)
Journey2health,

Can abdominal bloating be caused by pred? Ever since I have been on it, after at least one meal a day, I get really, really bloated and later have some wicked gas, with at least a touch of blood and mucus. I personally find the rectal enemas make bloating worse..
Posted 10/17/2011 6:43 PM (GMT 0)
Journey2health - no I have never tried rectal meds/enemas. I'm keeping that in mind for the future, if necessary.

I had another GI check up a week ago and the Doc and I are pleased at this point. I am at 20mgs pred right now. I did some extra time at 25mgs and am going down by .5's. I actually asked the Dr. if this slower taper would be okay and he agreed to it, while mentioning that a Calcium supplement would be good at this point.

I am really happy with the help of the Pred. The side effects are completely manageable for me, with weight gain not being any sort of an issue at this point. I have had funny things happen here and there, but in general, this is so much better than being sick 24/7.

I'm really hoping that as I get completely off the Pred, I'll find myself in remission. My doc is hopeful for that too - so we'll see.

We're not talking about Imuran anymore for now which is a big relief to me. That may have to happen someday in the future, but hopefully not.

That's my little update - hope it's encouraging to all the people who are scared of Pred. I know it can do bad things, but I'm thankful for the help it's given me (and so is my husband - big time! lol).
Posted 10/17/2011 8:04 PM (GMT 0)
I hear ya Tillie about the leg pain and tapering process.

I just had an allergic reaction to prednisone and now my docs want me to taper (in two week span) from 40mg to 5mg a day. I'm so afraid of the pain and mass blood loss returning... but I'm also starting a ton of fish oil/ l glutamine and asacol at the same time.
Posted 10/17/2011 8:12 PM (GMT 0)
I've been on 60mg (20x3 daily) for 5 or so days. Frequency has gone done, from about 15-20 to 4-6, but the blood still hasn't gone away, if anything I think it's worse. Side effects other than dry mouth and increased appetite are alright i guess, but i feel like my dosage is pretty high and I should expect better results than this. (i'm also on 6 asacol hd daily). :(
Posted 10/17/2011 10:21 PM (GMT 0)
Stereo, my leg pain went away in a couple of days. I think I was not able to tell how hard I was exercising until I tapered down to a lower dosage and then I could feel all the soreness - that's my non-dr theory. But nonetheless the soreness is gone now and I haven't had problems with that since.

I'm sorry jac91584 - keep going though, it might take a little while longer and I wouldn't expect it to make things perfect, but hopefully you will see improvement soon.
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