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Question... Rowasa or Prednisone???

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Posted 10/17/2008 9:16 PM (GMT 0)
Hi guys. Sorry I haven't posted in a while. Just been weak and trying to deal w/ my new found sickness.
Been on the Asocol for a month now for my UC. (the first med prescribed for me)
I doesn't seem to be helping everything is the same as before the medicine. (been in a flare for 3 1/2 months)Ohhh except I'm losing hair on my head fairly fast!

So yesterday at the followup with my GI. He said he wants me to try 'Rowasa' enema first to see how that works.
And if that doesn't help in a week or so to use the 'Prednisone' that he also wrote me a script for.
I know they both have some bad side effects and that the steroid is more hard-core and you can only be on it so long. I just wonder if i should go straight to the Prednisone and skip the Rowasa because I don't want to lose more hair and I'm not too thrilled about trying to stick some liquid in my ass.
Knowing the Rowasa may not even work. So anyonw who has an opinion or some experience with either or I would really appreciate to hear from you.

Thanks again :)
Erik
Posted 10/17/2008 9:50 PM (GMT 0)
That's a long time to be flaring, sorry to hear it.
Depends on where you are inflamed. The Rowasa really is the best if it's an area that can be reached with an enema (the ascending?). I've been on and off Prednisone many times with good success. But I'd go with the Rowasa if you can tolerate the indiginity of it, I think that's good advice. A topical will not affect the rest of your body as much as the predisone will! But if you are miserable, the prednisone can help, fast.
How much asacol are your taking? 12 pills, for a flare? Sorry about the hair loss, I wish I could give you some of mine which grows and grows and grows because of all the protein I eat I think, and genes of course.
Posted 10/17/2008 9:58 PM (GMT 0)
The "liguid (Rowasa) up your a--" can be VERY healing and helpful. It keeps me in remission. I would definitely try that before taking a steroid. What are the side-effects that you've heard come from using Rowasa?
Posted 10/17/2008 10:00 PM (GMT 0)
LOL At the hair...yeah I mean It's not like I had the thickest hair anyway but I can really see it going since starting the asacol. And yes it has been a miserable 3 months I think worst than the D is the constant weakness I feel. I feel like I'm 95 yrs old. I mean it's tough to get through a day of work. I lift weights and that has all but stopped the past 2 months I still push myself in like I did today but my work-outs are really bad. I just don't have any energy!! The thing is my GI stated 'inflammation throughout the colon' so I wonder if the Rowasa will even work plus it's the same medicine as the Asacol. It's quite possoble that the Asacol is not dissolving because I see them in my stool often. But still I'm sure the Rowasa will cause even more hair loss regardless if it works or doesn't. I have been taking 12 Aasacol a day 4/ 3x a day.. My script for pred. says 2 pills a day 20mg. a piece.
What if I started w/ just 1 pill (20mg) to see how that felt do you think I would get those horrible kinda scary sounding side effects like shaking and wanting to scream. I have to decide on something tonight. It just seems lots easier to swallow a pill than to stick this thing in my butt and lose more hair...
Posted 10/17/2008 10:04 PM (GMT 0)
Thanx for the replies Peety and Gaff..
Well I believe it's the same medicine as asacol right? Just that it's taken in the rectum opposed to orally.
So I losing lots of hair already from asacol so I think I keep losing the same or maybe even more hair with the Rowasa. Also the Asacol is making me wake up 3-4 times a night to urinate and that can't be too healthy plus it's quite annoying and leaves me even more tired the next day..
Posted 10/17/2008 10:14 PM (GMT 0)
My pred side effects subside once I'm down to 15-20, so you might try 20. After all these years, I keep prednisone in stock and choose my own dose! I start with 30 mg, if I'm miserable. 20 mg pills, I don't think I've ever seen those, are you sure, they must be big. Anyway, just know once you start you have to taper down off it. And it might give you energy!! Well, keep you from needing sleep. I work out at 5 a.m. when I'm on prednisone, and gets lots done. :)

But, try the rowasa first, for 4-5 days maybe, and see if you think it's helping. Read the threads on doing it right...(push the air out of the bottle first , relax, etc...).
Posted 10/17/2008 10:22 PM (GMT 0)
Erik,

I am almost in the same boat as you. I am flaring badly since 3 months now and 12 Asacol a day and rectal meds haven't done anything for me. I always got away with it. I always threw a tantrum when I was offered Prednisone. 6 days ago, I literally begged for being put on Prednisone - it is the first time for me with the prednisone. I'm taking 40 mg Prednisone and this is my sixth day. I will take the 40 mg for at least until Monday and then I will get back with my GI and see if I can start tapering down or not. The flare is slowly improving and I start to feel better. I really had to get sooo sick to literally beg for Prednisone. I was so scared of it, but I don't think the side effects are too bad (yet?). The first 3 hours after taking it are kinda weird when I feel as if I drank two pots of coffee, I get a little dizzy and feel kinda spaced out. Sometimes I am a little angry at anything and anyone for nothning or start crying, but that is FAR better than all the loo trips, the pain, the bleeding, the diarhea ... all I am saying is: Don't be scared of Prednisone! Don't take it casually and don't refuse it either! It might help you right away and you might find it was worth it. And you might not even deal with big side effects yourself. The longer you wait, the sicker you might become, the more Prednisone you might need to get rid of that nasty flare.

Just my two cents.
Posted 10/17/2008 10:25 PM (GMT 0)
Thanks Peety :)
I'll try the Rowasa first I guess. I'm just sick and depressed from feeling like this. I don't do anything on friday, saturday night ect. anymore I'm too weak and sick feeling. I cannot even enjoy working out anymore work is miserable. I mean I'm temped to just take the prednisone now because I been reading it gets people out of flares and I just want this flare ended asap. ITS BEEN TOO LONG!Then I hear those scary side effects so I feel like it's a gamble.
I would really like to gain some weight back and I hear that the P will do that too.(lost 13 lbs.)
My question is now if I start the P tomorrow when should I see results and potential side effects and if the side effect are too overwhelming can't I just stop using the P and will they go away? My thinking is if I can use the P for a short amount of time just to get to some sort of remission then maybe try something else.
The next question is are the side-effect worst or better compared to a flare??
thx again.
Posted 10/17/2008 10:31 PM (GMT 0)
Thanks Scarlet... I'm really considering going straight to the P.
At this time i'm having 2-4 bms a day all D and getting stomach pains on a scale from 1-10 about a 6
BTW I have been taking 2 vicodin a day for the pain regularly so maybe with out those the pain would be much more intense I don't know. Again my biggest complaint is the weakness. So I wonder if my symptons are bad enough that it's worth taking the P.
I guess I wait to hear a few more opinions before I decide.
Posted 10/17/2008 10:50 PM (GMT 0)

Erik,

I started Prednisone, because I had 20-30 BM with lots of blood and cramping - I haven't slept longer than 2 hours in a row at nights for weeks! Every day on the Pred brought a little relief: Less BM and greater time intervals between them, less pain, although it is still extremely bad late at nights/nights/mornings until around 11 AM. I had already greater improvements on the fourth day with around 10 BM (only two of them were bloody), I hardly went yesterday, but then with a vengeance last night and this morning and I still haven't had formed stool and I still have bleedings. I am still pretty confident that it will improve more and more each day.

Once you are on the Pred, you MUST not stop it abruptly! That is very important and crucial. Has your doc told you how to take the Pred? You need to taper it off slowly and gradually - never ever stop abruptly!

I am supposed to stick to the 40 mg for a few more days since my improvements are nothing close to satisfactory and then talk to the doctor and take it from there.

I heard a lot about weight gain and food cravings with Pred, but I haven't had that ... yet? Due to the severe flare I hardly eat, because I am nauseous all the time and can only handle a bit of blant food. But if you get the food cravings and really need/want to gain weight, enjoy the cravings and give in :-) .

The weakness has decreased in my case, too. I cannot exercise like you do. Heck, I am proud when I can manage to empty the dishwasher without taking a break, but it does give you a boost of energy - especially after the first hours after taking it.

I just started vitamins and probiotics and I hope it all will pan out well. Have you talked to your doctor about vitamins and probiotics? I never paid much attention to it before, but now I seem to have a top notch doctor who tries everything possible to make me feel better without making me feel as if I have no say and no options in my treatments. I see all kinds of supplements and probiotics people on the forum take and I am still learning about them. Was recommended Align - so I will try that out first and see how that works.

Posted 10/17/2008 11:08 PM (GMT 0)
Scarlett,

Well from what you're saying it seems you have a much more severe case than me at this point. I'm very sorry for all your pain and suffering. Yeah I take a probiotic pill and eat 2 yogurts every day and I take a multi-V.
As far as exercise goes i think because I was a die-had work-out rat I was in good condition before so my body can do more now but I notice week by week I'm getting weaker and struggle more and more.
That's why I'm not sure at this point if it's worth taking Predisone It seems that most everyone on it has much worst symptons than me. I mean I'm weaker than I have ever been but yesterday I only had 1 BM in the morning, yes it was D but still its only 1 today had two and that will prob. be it. So I'm still not sure if it will do more harm than good..?
Thanks.
Posted 10/18/2008 8:31 AM (GMT 0)
2 - 4 diarrhea a day and you want prednisone?

Have you ever been on Pred? Tried to get off pred?

Know what you're wishing for.

I'll take liquid 5ASA meds up the butt any day.....and of course, it's been almost 20 years using it for flares and tapering to maintenance. It takes commitment to learn how to use them effectively....which means the time I will avoid pred like the plague!!!

You seem like a committed type of person....but you could consider to get your priorities straight.


Start the rectal meds to go with the Asacol. How many are you on daily?

quincy
Posted 10/18/2008 12:54 PM (GMT 0)
Well Quincy I think you just 'scared me straight' from taking the Prednisone.
I take 4 asacol 3 times a day fora total of 12. I just started the second bottle. Funny thing is it's seemed to help for 3-4 days I actually had some formed stools and some energy. Then things just went back to my regular last 3 months D and stomach pain and weakness. I only took 4 asacol in the past 36 hrs an actually feel better this morning than lately so far...Hmm is that weird?
Posted 10/18/2008 3:53 PM (GMT 0)
Good morning,
Just a couple more comments --
One of my GIs (who did the 5-ASA -- asacol -- drug studies, smart guy) strongly cautioned against taking vitamins. Something about the binders in them interfering with the medications, if I recall. I'd be interested to know if anyone else has info about this.

The Asacol takes a while to get to your gut which is where it will dissolve, so it's hard to know what dose was making you feel better or worse. If it wasn't explained to you, the special thing about asacol is that it is really an ordinary anti-inflammatory, but with a coating that keeps it from dissolving until it reaches your colon (which is a different ph than you stomach). That's why you have to take them whole. I've never had any kind of side effect from asacol, I guess I'm lucky.

I know quincy is very anti-prednisone, and it can be horrible. But it can also finally bring you out of your misery. I experience all the side effects (and one is ravenous hunger, so that's why the weight gain), but still am so grateful for it when I'm to the point of blood loss making me weak and spasms keeping me from doing things. I avoid it until absolutely necessary, but I have been know to beg for it!

EA, get a chem screen if you can and find out what your body is lacking that has been making you feel so weak.
I hope you keep getting better!
Posted 10/18/2008 5:04 PM (GMT 0)
i'm antiprednisone subjectfully because people and doctors use it for UC as a quick fix. It's not.

It also can set people up for non-5ASA drug compliance, and as I've noticed, a tapering hell.

Jumping from 12 asacol to 4 can set you up for other problems.  Starting at 12 asacol can also cause some side effects where one can assume it's worsening symptoms.  The side effects alone might be telling you it's too high a dosage.

12 is a high dosage, now that you're at 4, maybe take 6 (3 twice a day) and stay there to start....PLUS....START THE ROWASA NIGHTLY FOR AT LEAST 2 - 3 WEEKS. (not yelling, just emphasising).

Take them with food.....they may stay in your system longer...or take them on an empty stomach...they may stay in your system longer...lol...see which one works better. 

Yes, pred has its place....

Steroids are a miracle...I use inhaled corticosteroids for asthma.

Med non-compliance and yo-yoing will cause more confusion for you mentally and physically....and I'll bet your focus will end up being on what you ate that day or what you did to cause your symptoms.

Know what you ask for, prednisone should be used if your meds don't work. 

There are also topical steroid meds, both oral and rectal, if you cannot use the 5ASA.

And if your goal is to be perfect as you were before with no symptoms, you need to rethink the facts of what's actually going in your body while you're flaring, as well as recognising the symptoms that tell you to increase and start tapering meds, etc.

Fibre supplements will help bulk up the stool, slow transit time, etc.

Probiotics are a must from my perspective.

and remember...this is all my perspective....

quincy

Posted 10/18/2008 7:25 PM (GMT 0)
I totally agree with Quincy.  Try the Rowasa before going to Prednisone.  If you think Asacol is giving you all of those negative side effects, the Pred is 100 times worse (in my opinion).  I have never had any side effects from Asacol (or Rowasa).  You just have to get over the "ickyness" of using the Rowasa and give it a chance.  Are you sure your hair loss is from the Asacol?  I also had very bad hair loss while in my last flare (it was coming out by the hand fulls), but it slowed way down when I got the flare under control.  Try taking biotin (in the vitamin aisle) for your hair loss; it really helped me.  I have also found that staying away from fried foods, alcohol, carbonated drinks, and sweets is a good "self help" method of getting me past a flare.  Good luck, and let us know how you are doing.

Posted 10/18/2008 10:22 PM (GMT 0)
Thank you guys I appreciate all the feedback. This disease is new and I'm very confused. Let me try to be a little more detailed about myself.
I'll try not to make this too long..
Since I was young even in my late teens I remember having bouts of 'D' off and on depending on food ect.
I started working-out at about 19-20 and I used creatine and different proteins, I always though it may had been the supplements that brought on the 'D' when I got it. Ofcourse being young and ignorant never took it too serious just figured I could deal with it. That is pretty much the way it remained for a long time. I'm guessing this problem has been with me for a long time and slowly has progressed to what it is now. I remember on day about 7 yrs ago or so not to be disgusting but honestly after a BM remeber seeing an undigested steak tip in the toilet in my 'D' That was a bit strange so I seen A docter and he sent me to the hospital for a barium xray and it came back normal so from there on I just blamed it on what I figured was a sensitive or sour stomach.

So the remaining years I have had times when I was having normal formed bm's and then I would have quite a bit of D on and off...That's the way I have always been moving bowels anywhere from 2 to 5 x's a day.
Then about 3 months ago I woke up w D as I often did but this time it never went back to formed. In the last 3 months it's been 2-6 bms a day all D with joint pain,severe fatigue, my heart races and i feel like i'm going to faint sometimes when I'm at the gym. Ohhh and bad stomach bloating and pain usually after a meal.
I went to my pcp after about 2 1/2 weeks of this. He did all the blood/urine and stool test everything normal.
Then he sent to the GI. he did more of the same test and sent me for a catscan that was normal.
Then we set up the colonoscopy I'm sure i spelled it wrong sorry. That's when he told me my entire colon is inflamed and I have UC. He put me on Asacol 4 at 3x's a day. been on that almost 3 weeks and the this past thursday after I told him my symptons are the same he gave me the Rowasa and Predisone scrips.
I have not used either one of the new scrips yet. Still unsure what to do. i only took 4 asacol yesterday and none today so far guess I'm trying some desperate and maybe stupid trial... I want to see how my body reacts to no medicine for a day or two. Today I actually feel a little better than I have in a week or so.

Does anyone think or believe it may be possible to go in remission without any meds?? Or is that just unrealistic hopeful thinking on my end?

Thanks again you guys/girls are great support and information I'm glad we're all here for each other :)
Posted 10/18/2008 10:58 PM (GMT 0)
Consider seeing a naturopathic doctor if you are so unsure about the drugs. He/she might be able to evaluate what is happening according to what you've eaten or supplements you have used, and have some more holistic advice. The naturopath's approach helped me a lot and allowed me to get off prednisone when I felt I was stuck and just not getting better this past summer.
I don't remember if you mentioned probiotics. Maybe a good strong probiotic would help, it couldn't hurt! That's the first thing a naturopath will recommend, if you're not already taking some. GIs seems indifferent to them, but you'll see most everyone here recommends them!!

It's probably unreaslistic to think this flare will just go away by itself, eventually. You will suffer needlessly.

Is it possible what is making you feel better is the asacol you took a couple of days ago?? I am surprised when folks have trouble with asacol, and wonder if what they think are side effects are really due to the UC and not the drug. I know when I participated in the study for it -- before it was approved -- they kept track of everything I experienced while I was on it, whether it was related to the UC or the drug or not, so the list of side effects are overblown. It's really a very mild drug, just has that special coating. So I think -- but of course can't know -- that the asacol is not hurting you but can help. When I was accepted for the drug study I was days away from surgery. Only sulfa drugs and prednisone were available for treatment then, and I was allergic to sulfa and the prednisone wasn't working. I don't think anyone knew about probiotics then! The asacol got me turned me around quickly and saved my colon. So I hope you don't give up on it.

How long have you been dealing with this? (How old are you now?) Good luck, keep in touch
Posted 10/19/2008 7:17 AM (GMT 0)
We all at least initially hope we can do without meds and find the "cure" for ourselves. 

No one wants to take meds I don't think...especially continually. 

I agree that the use of the Asacol and possibly the decrease is what's changed your symptoms.


Eric....You aren't the same as you were before, and considering UC is forever, you'll eventually figure out what can work for you.

I'm hardcore 5ASA....oral and rectal for almost 20 years. Med compliance has paid off well considering my last c-scope.

You're a young person....life is short....sucks to suffer if you don't have to.

Work on being well...
quincy

Posted 10/21/2008 3:59 AM (GMT 0)
Erik, since you've been experiencing colon malfunction for a good while now, & the doctor says you have inflammation throughout (= pancolitis), you need to find the right medication & stick with it until your inflammation comes under control. THEN you can think about reducing dosages. Experimenting on your own day-to-day is unlikely to solve the problem. Also, one needs a lot of rest to heal inflammation-- so working out right now is bound to make you feel worse. For many UC patients taking Asacol in combination with nightly rectal med works very well to reduce the symptoms. It's not a "quick fix"-- it can take 2-3 months to do the job, but the trade-off is that it has fewer side effects than steroids. Prednisone should really be used only for severe inflammation, when one has 6 or more bloody bms daily, pain in the lower gut, fever, chills, etc. If you do take it, follow your doctor's Rx-- don't fiddle with it because it can affect every organ in one's body. In the meantime, keep yourself well-hydrated, eat as balanced a diet as you can tolerate, & take a daily multivitamin, preferably one w/o added ingredients like artificial colors. Avoid junk foods. Have a look at the IBD articles on Salix Pharmaceuticals Newsletter online (archive) 2004-present. They have info on UC meds, diet, lifestyle, exercise, etc. that should help you figure out how to proceed-- to help yourself over various hurdles that UC presents. Best wishes! Keep us posted on your situation. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 (generic) Colazal daily for maintenance of remission)
Posted 10/21/2008 4:55 AM (GMT 0)
hi all...i think this forum is great and very useful and supportive. i'm a 24 y/o female Dx w/ UC 6 yrs ago. my older brother was actually Dx w/ UC a few months ago and having a difficult time dealing w/ it. i'm currently getting over a horrible flare (~15 BM/day, very bloody, gassy, wt loss, no sleep, etc etc) i've been put on the rowasa enemas and mesalamine supp w/ previous flares, which helped, but both were not effective w/ my last flare, so i was put on prednisone (started at 40mg then tapered off), along w/ the rowasa enema. both helped me get through the flare. i was fortunate and did not experience any SE from the prednisone. however, my brother was put on it as well and became quite nauseous each time he had to take a pill (so obviously SE present differently for ppl). currently i'm just using 1000mg mesalamine hs...still having some blood and mucus in my diarrhea. my brother is currently taking 9 asacol/day...and says he is still experiencing Sx, but much better than he was originally.
i've recently done some reading on probiotics and am curious which ones ppl are taking and where i can get them. i've heard about VSL#3 specifically for UC..anyone have any feedback about it? i'm also curious about what foods ppl find make their UC worse. i've done some reading and found that sulfur containing foods (cheese, meat, brocolli, cow's milk, etc) are not good for UC. i just would like to start doing some things in my everyday life to help reduce the inflammation and have 'normal' BMs w/o having to rely completely on pharmaceuticals. oh..i also take fish oil and eat lots of yogurt :) thanks for any input!
Posted 10/21/2008 6:22 PM (GMT 0)
SSE,
We have a grocery here that has organic etc. fare and they have a good selection of probiotics (in a refrigerated case, that's a good sign I guess). I get mine from my Naturopathic doctor, I'm about to switch from Replete ($$powder packets) to a pill form called Forte. I guess a lot of people get them online, there have been many threads with people sharing their favorites, including VSL#3. You might want to check for old threads or start a new one.

I stopped eating all gluten and started probiotics at the same time, so I can't say which one worked but something did! It would be a good step for you and your brother to start taking probiotics. Sulfur, I don't know about. Everyone has different triggers. My worst is iceberg lettuce.

Wow, no side effects from prednisone, that's amazing. I get them all, but nothing permanent fortunately.
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