Steriod Advice

Collict: I believe your son made the right choice too.

Quincy: So you have never used steriods and would lose the colon before even going on 10mg or a steriod enema? Is it the long term harm it's doing to my other organs (not sure what those are) or the side effects while on it that you don't like? I've read about cataracts and diabetes but what else should I be concerned about? I been on and off these for a long time.

I'm calling the doctor today for Remicade. I used it to achieve remission before but on another flare I had a bad reaction because the at-home nurse gave it too quickly (that's my contention at least). I probably have antibodies but it's my last shot I think.

I've been in flares on prednisone for over 6 months in the past so I'm not new to this but it's getting old. It's just that my last remission of about three years was the best time in my life I could remember...I want that again with my colon.

Burli....I used steroid foam enema for 2 weeks by insistence from another doc when mine wasn't available and they worked well. That doc said that if I were his patient, he'd have put me on prednisone initially. I told him I was thankful he wasn't my doctor. Once my doc got back, my prescription of 5ASA resumed. Oh, this was the exactly 20 years ago at Christmas.

I would only use a 10 day taper of prednisone if needed....I would NEVER use a long-term dosage as you and many have been on and I know my mental state would not be good. Hormonal ups and downs are not my friend.

I'm thinking long-term/quality of life for ME, and I'm pretty intolerant of symptoms either emotionally or physically since my UC has pretty much been controlled quickly with 5ASA oral/rectal meds. Yes, I flare, yes I go back to nightly meds long before others would, yes my flares are very minimal.....but incontinence scares me as well as not having control, so I want to maintain the integrity of my arse to the best of its ability.

REgarding steroids, they're miracle meds as well....I use a steroid inhaler to control my asthma as well as hydrocortisone cream to deal with any skin inflammation. But systemically...I'll pass.

quincy

We all take risks to feel better. What works for one doesn't work for others.

It's good you're feeling better. I'd rather a slowly developing risk than one that can hinder me for life, however.

Make your decisions for the long-term....and if it's short-term, make them wisely.


You should at least try rectal meds....again....

quincy

When you were doing the Rowasa, what other 5ASA med were you on orally? If nothing, it's logical that you got worse because above the area where the Rowasa doesn't reach will continue to be active.

How much Lialda are you on at this time? How much Colazal?

I got a doctor who believed in 5ASA meds and I responded from the initial treatment...I was up and down for the first two years until we realised I was better suited to realise my symptoms early and treat with the rectal Salofalk. I don't up the Asacol with each flare, I did once to 8 daily and with the OK from my GI that continued until I weaned back to 6.

My symptoms have changed as I'm getting older. I went over 14 years without bleeding with any flares, which was a shock when I did bleed a few years ago.

Your UC might be worse than mine in the way it seems that yours is higher than mine. Diarrhea means it's higher than the rectum....I don't get diarrhea any more because I don't wait till that point.

Of course, some foods cause me diarrhea, but that's a finished issue within a day or two.

I think with experience, different meds and learning how to juggle them to be one step ahead is a plan we eventually figure out. I'm fairly in tuned with my body, but much more intolerant of stuff...so I deal with things early. I'm not afraid to take most meds, and I do take aspirin for headaches.

I eat whatever I please, so food's not an issue with me to the most part. I've just recently found that fish oil is not for me. I've finally confirmed it after trying a few times off and on. It could be that my tolerance for concentrated oils is the issue, not the fish per se....but I'm not gravitated to eat much of it except when I'm out, so maybe subconsciously there's something to that.

I have yet lots to figure out as my body is changing in the next phase of age....totally sucks. I need to exercise a bit more and continue to aleviate some stress levels (which I'm probably addicted to). REgardless, aging to me means more issues, so best get a plan in order for that reason alone.

Hang tough....you'll get it figured out once things start working for you. If you can lower the pred quickly from that high dosage, I think that would be a good thing.

One tapering dosage process I learned here from another member a while ago (wish I could remember who) was to do an alternating taper...so if 20 - 15 is the toughie, do:
20, 20, 20.....15, 20. 15, 20, 15, 20, 15, 15, 15, 15......10, 15, 10. 15, 10. 15, 10, 15....10,10, 10, 10....etc. makes total sense to me since that process is used for narcotic withdrawl as well.

Keep us posted for sure!!!!!
quincy

Quincy: Thanks again for sharing...
I'm mailing in my VSL#3DS order today for a 3 month supply; I plan to always take that. I'm taking a Walgreen probiotic in the meantime.

I'm on 2 Lialda/day and I do use psyllium husk fiber.

When I tried Rowasa I was taking Asacol as well. My symptoms got worse so I tried Colozal as that's what my sister had success with. I had to use steroids when the fever got bad. At 19 I was in no place to make a decision about losing my colon and my parents went with the GI's plan which was steroids. I got better and went into a long remission so we were all pleased.
I tried Rowasa again another time but did not notice benefit.

My UC is on and off so it's hard to know when to start initial treatment above maintenance drugs. In remission I have 2-3 bm's in the morning. My very first indication of a flare is always one morning of mucus with a bm. I then always have no other symptoms for the next few weeks until I notice the first sign of blood on the toilet paper.

So I will do this...assuming I will get into another remission. After I notice mucus I will, right away, do the rectal meds plus increase the oral. I'm going to go over a plan with my GI of course. I will also up the vsl from a maintenance dose.

Does this seem like a complete plan. The only thing is how will I know when to taper this back since I normally would not have other symptoms until the blood starts anyway?

Anyone else also please advise. Thanks

Still no fever today but more cramping.

Enemation,
I appreciate your standing up for me but they are really just trying to help me. I asked for all this feedback. Even though I know most of what folks in here are telling me there is usually at least one thing on someone's post that I can use to tailor my own treatment. I think we all use bits and pieces of these posts for our benefit over doing exactly what one person advises. Like the name by the way.