AHHHH, they want me to take Prednisone!

So, since the Proctofoam is not working, my GI has prescribed 40 mg Predisone/day for 2 weeks before tapering off. Wouldn't it have been a better option to try the liquid steroid enema before going to an oral one?

Ugh, and my father was the one who talked to them since I wasn't home and now I can't reach them until Monday!

 

A short round of pred, starting at 40 mg and immediately tapering, quickly turned around the last mild flare I had. I felt 200% better almost immediately and was kicking myself for putting it off for so long.

Oh no, I don't think you're being condescending at all :)

I know it's definitely not wise, for sure. The reason I went off them is I just moved back to Florida from Iowa and started a new job, and now I'm waiting for my new insurance to start (in July) and have no insurance. I looked into drug assistance but it seems the only medication I'd qualify to receive for free/reduced price is Azathioprine, which I'm sort of leery about taking without being under a doctor's supervision and being able to get the routine bloodwork. Asacol always makes me feel worse rather than better and I have a bottle of prednisone in my cabinet, but have no intentions of taking it as I become steroid dependant and can't taper off it without flaring severely. I really haven't ever found a medication that really worked for me and kept me in remission, and I've tried everything short of Remicade/ 6-MP.

Anyway... Basically, I would/should be on medication, but am sort of stuck, and already in a mild flare :( I'm hoping maybe the Digestive Advantage and daily pomegranate juice will help, at least until July. I already have a GI appointment set up for July 18th and told them "I'm not on medication so I might need a colonoscopy and some quick intervention shortly after this appointment" haha.

Hi ComedyDork,

It might sound a severe option, but the pred really does seem to work very well and very quickly for the majority of people - if you're stuck in a flare and the stuff you're on isn't doing the job, it's a fairly sure bet to beat that inflammation into submission. Proctofoam is a steroid in itself anyway (Hydrocortisone), but if you're flaring it may not be staying in (pardon the bluntness) long enough to do its job properly, and so another type of rectal med might not be the answer. Whenever I take a high dose of pred to get back into shape, i'm usually feeling better within a couple of days, and i've been very lucky compared to most in that i don't get a lot of side effects. Hopefully, neither will you!

The important thing is to get yourself into remission and feeling well again, or at least well enough for any other meds to have time to take effect. I also agree with Silent Lucidity about 6MP/Azathioprine, it is excellent stuff if you're having difficulties with steroids (I'm being weaned off the steroids with the help of 6MP).

The important thing to remember is that there are still lots of options, medication-wise, and there is a good chance they'll find the balance that settles your system down.

Hope you're feeling better soon.

 

That's okay, ediekristen! I'm sorry you don't have any insurance! I guess I'm pretty lucky that my dad's insurance will cover me for a couple more years.

Nope, I haven't started the prednisone yet. A lot of these side effects sound even worse than flaring! I think I'd rather have UC cramping (which actually isn't too bad) than joint or muscle soreness. I already get wrist and fingerpain if I write too much or play instruments for a bit. And I read type II diabetes?! I'm already genetically at risk for it since I have a grandparent on both sides of the family with it. Not to sound too superficial or anything, but I already have enough facial/body hair w/o any drugs! I could just go on and on.

I'm also scared that b/c I'm such a tiny person (5 ft. 84 lbs) that prednisone will have a bigger negative effect on me. I mean, low dosage hormone birth control pills even gave me unusual side effects (diarrhea, nausea, vomiting, worse cramping than before). And the other thing that worries me is that it'll weaken my immune system. I've had horrible allergies for the last month or two and I have a really bad cold as of last week. Should I really be starting steroids when I'm sick with something else, too?

Bum Deal said...

but if you're flaring it may not be staying in (pardon the bluntness) long enough to do its job properly

Just to clarify, are you saying that I might not be retaining it? I'm pretty sure I am b/c I take it right before I go to bed, and don't use the bathroom until the next morning. I was just wondering about the liquid enema b/c I thought it goes further up the colon.

Hana24--I already asked my GI about that and he said 9/day was maximum.

i like to call prednisone the devil!!! I literally cried when my doctor told me i had to go back on it!!!.. As much as I hate it, it is literally the only thing that works for me.. and trust me it made me feel a million times better!!!

I talked directly to my GI yesterday (I usually talk to his nurse and he didn't sound too happy...) and told him my symptoms. He said that maybe we can avoid the prednisone because my symptoms don't sound as bad as the nurse described. And he said that proctofoam takes 3-4 weeks to kick in, and I've only been on it consistently for a week and a half. So he said to keep that going for 3 months and he prescribed an antibiotic (starts with an "R"). He said that it only kills bad bacteria so I shouldn't worry about increasing my probiotic dose. Anyone purposely prescirbed an antibiotic for UC?

I am currently taking 20 mg pred having tapered down from 40mg which i took for 3 weeks. This is my 6th course of pred over the last 6 years and can honestly say the side effects this time have not been so bad. I have been very strict (although slipping a bit now) about my calorie intake and salt intake and been drinking lots of water and although I have a bit of a moon face it's nothing like it has been in the past.  All my family who are very honest with me sometimes a bit too honest have said that I just look healthier this time. I have not put on any weight, I have no aching muscles or cramps. Maybe a bit of extra facial hair but nothing some wax strips don't sort out lol. And I feel well which is the most important thing.