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Should I take Pred? is it too soon?

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Ulcerative Colitis
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Posted 4/7/2011 3:37 PM (GMT 0)
Hey people, was recently diagnosed with UC (feb.24/11) and for the most part got it under control taking asacol @ 800 mg 3/day. But about six days ago I started flaring again pretty badly. They doctor I go to is alright, not spectacular but gets the job done. The only issue is that there's a bit of a language barrier and pretty much as soon as I said there was bloody D happening again she suggested Prednisone. As I had already stated before to the doc I would prefer not to go on Pred as I've heard nothing but bad news about it. So really I'm asking a few questions here, should I shop for a new doc? Should I cave and go on Pred? Any other alternatives to stopping a flare? I'm supposed to see a gastroocologist next week but I'm dropping weight pretty rapidly. Any help would be great, thanks
Posted 4/7/2011 3:40 PM (GMT 0)
Rectal meds?
Posted 4/7/2011 3:50 PM (GMT 0)
zoolander (loved that movie!!),

Not everyone has problems with pred. I was on it for 3.5 months and had no adverse reactions, no anxiety, no moon-face, no mood swings, no insomnia (well maybe a little). I did gain some weight, but not as much as I lost while I was flaring!

I was on 40mg for about 2.5 months then decreased my dosage once a week like this: 40-30-25-20-15-10-7.5-5-2.5-0 with no increased UC symptoms. I was tired from 10 down to 2.5, but nothing that kept me from my normal daily routine.

I realize I'm probably the exception to the rule, but I just wanted to let you know that there are people who don't have problems with pred. Plus, it lessened the UC symptoms in about 24 hours. It took about 2 weeks before I was having 1 BM/day with no urgency, blood or mucus.

I think you should ask your doctor about adding rectal meds and maybe increasing your Asacol, I'm on 1600mg 2/day as a maintenance dose.
Posted 4/7/2011 4:53 PM (GMT 0)
Thanks a lot. Good to hear that some people have little to no negative reaction at all. What sort of rectal medications would you suggest I ask about? (as I'm more or less a newb when it comes to this stuff, not for a lack of internet researching tho) I will probably try it although I have a few people telling me about other drugs and such that would be better. I know I've only had this nonsense since december but I have been jumpeing back and forth between 185lbs and 150lbs so its getting to be a nuisance. I'll look into increasing the asacol too, just wish it wasn't so darn pricey lol
Posted 4/7/2011 4:54 PM (GMT 0)
I would try mesalamine enemas or steroid enemas before going on Pred.
Can you call in and ask for those?
Posted 4/7/2011 5:11 PM (GMT 0)
I can't call in, I'd have to make an appointment as its just with a regular physician. Waiting to get an appointment with a gastrooncologist(spelling?) for next week so I was going to try and wait it out but I can barely get up a flight of stairs without getting tired (sad because I was training mma just two months ago and am also a personal trainer). Then I have to make a mad dash back to washroom again lol. I will definitely ask about those for sure
Posted 4/7/2011 5:35 PM (GMT 0)
asacol was too pricey for me as well so my doctor has me on sulfasalazine which is the same thing. It cost me about 3 dollars for 120 pills of 500mg tabs. I take 2 tabs 4 times a day now and just came off pred. I didnt have any problems when i was on pred, they started me at 40 mg and went down 10 mg a week until 2.5mg. Only thing that happened to me was really bad anxiety, other than that it worked the first week. Hope this helps!
Posted 4/7/2011 5:37 PM (GMT 0)
gastroenterolgist, maybe? :-)
Posted 4/7/2011 6:12 PM (GMT 0)
Ill ask about the sulfasalazine. If it'll keep the 120 bones a month in my pocket ill be that much happier! And I guess its true when it comes to internet research that you only hear about the bad. Also, I'm betting your right it probably is gastroenterologist. Thanks folks
Posted 4/7/2011 8:41 PM (GMT 0)
zoolander - I was on prednisone for 14 months, and I really didn't have very many side effects. The only thing that was noticeable to me was that I lost a bit of hair, but is is now coming back in nicely.

If I gained any weight, it was less than 5 lbs. Bit of a heavier-looking face, but again not terrible.

For me, prednisone was my dream drug, but at the time I went on it, I was going up to 19x per day with blood, D and urgency. I had no energy, and was quite ill. If I could stay on it, I would.

Unfortunately, it seems to be the only thing that works for me, and I can't stay on it. Every time I tried to go off of it, I started flaring again. :( Now that said, lots of people take it for a few weeks or so, and have no trouble getting off of it.

Good luck with your decision.
Posted 4/8/2011 12:15 AM (GMT 0)
If I were you I'd try more Mesalamine first. Maybe even hydrocortisone enemas before pred. You may or may not have crazy side effects from pred but it is undoubtedly bad for your body.
Posted 4/11/2011 12:36 AM (GMT 0)
Thanks everyone for your help. After friday i had lost 15 lbs in two days and decided that 20 plus bathroom breaks a day should become a thing of the past. i talked to my doctor about mesalamine and other options but she basically said it was at such a trouble some state that prednisone was needed. after talking it over with the family and taking into consideration what i've read here, i decided to go on prenisone. the results: after one dose of 100 mg, my blood in d stopped, solid stools formed and i fell like a million dollars. hopefully this isn't a temporary fix but well see. again, thanks everyoneVIEW IMAGE
Posted 4/11/2011 12:47 AM (GMT 0)
Glad you are feeling better. Pred can turn off D like a faucet. But 100 mg?
That much? Drop as quickly as you can to 40 mg. if you can. Please try the rectal forms of mesalamine so you can get off pred easier if you are meant to maintain on oral mesalamine.
Posted 4/11/2011 1:01 AM (GMT 0)
Well, I am happy you are feeling better too. Prednisone can be a wonderful quick fix, at least to settle things down.

I agree 100mg seems like a lot. How long are you on that dosage, and what is your taper schedule?

Since things are calming down so quickly, I would also see if you can get the rectal meds.

Good luck!
Posted 4/11/2011 1:28 AM (GMT 0)

zoolander said...
Thanks a lot. Good to hear that some people have little to no negative reaction at all.

That doesn't mean they had little to no negative side effects.

Much of pred's side effects are hidden. Pred eats up the connective tissue. In other words, it ages the body. And since much of our connective tissue runs deep inside our bodies, we can't see much of the damage pred has done.
Posted 4/11/2011 3:33 AM (GMT 0)
She should have put you on rectal meds initially in conjunction with the oral.....at least to try them.

Where exactly is your UC located...limited or throughout?
q

Posted 4/11/2011 3:55 AM (GMT 0)
My taper is
100 mg's for 7 days
50 mg's for 7 days
25 mg's for 7 days
10 mg's for 7 days
5 mg's for 7 days
Then I'm done

I realize the damage on the connective tissue and I am taking glucosamine to combat the negative effects on the ligaments and tendons. And as far as where my UC is located I've asked and she really was passive in giving her answer, basically just said it was all over.....as stated earlier there is a bit a language issue where her english isnt the best but I see the gastoentorologist later this week and that should clear up a lot of questions. Hopefully. As for day 2 of prednisone it seems all is well.
Posted 4/11/2011 4:13 AM (GMT 0)
When you drop below 25 mg I think you should taper much slower, perhaps

25 mg 7 days
20 7 days
10 7 days

then drop by 2.5 every five to seven days

Below 20 is when most people start experiencing set backs.

Meanwhile, your maintenance meds need to take over for the prednisone so please give it all you've got in terms of mesalamine -- orals, rectals, even suppositories --

I failed my tapers twice because I was just on Asacol, third go round I did rectal enemas and suppositories and was able to sail off pred and not re-flare.
Posted 4/11/2011 4:42 AM (GMT 0)
I'll have to look into that but it sounds like a viable option. Asacol really seems to do nothing for me but hurt my pockets. So I'll explore some of those other options as well. I figure being stressed about UC and affording the medication for it probably doesn't add up to a lot of good. At least I'm capable of being a solid DD for the forseeable future
Posted 4/13/2011 9:12 PM (GMT 0)
Anybody ever go on pred and have there knees feel like there ballooning up? I'm pretty active and hit the gym 5 to 6 days a weak still but this morning (day 4 of using prednisone) I made it halfway up the stairs and it felt like my legs were about to explode. Just wondering if this is regular or something I should be worried about
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