Have you refused Prednisone treatment?

I was rushed to ER Saturday with severe intestinal pain - this was the worst I have ever felt. I almost thought my guts were going to burst from preforation. Ends up as a result of the catscan it was severe inflammation that was causing the pain. They wanted to admit me but I ended up checking myself out because I did not like how they were treating me and was actually tired of hearing the same protocol crap the dr's go through with each flare I have. It usually ends up always as a grueling 7 days in hospital with tests and rule-outs and then being sent home with prednisone and antibiotics. I've been through it so many times and this time I threw my hands up and said that I would take matters into my own hands. my family wants me to go on the usual prednisone treatment but I refuse. I hate that stuff. I am home resting, making nutritional broths and drinking reishi tea (powerful anti-inflammatory), giving my guts a rest, and taking FYI by garden of life (another form of high potent ant-inflammatory.

Do you think this is stupid and even stubborn of me to not want to take the usual protocol? Is there any advice anybody has? I feel strongly about getting out of this one by myself. I am more favorable for natural alternatives and am against med's at the moment.

Any thoughts would be greatly appreciated!!!

I think the Pred is the best thing to get a flare under control quickly. But thats just my personal opinion. You can try to go on a liquid diet and see if that quiets it down, but if it doesn't have you thought of trying Entocort? It is a steroid, but has less of the systemic side effects that Pred does.

Are you still on the LDN? Or did you stop that too?

Please be careful, if things are as bad as you are describing you could cause yourself some serious damage by not controlling the inflammation. I hope the liquid diet works for you.

Good luck,
Gail*Nanners*

Well I'm with you. I refused to be treated by pred, my doc said this was the only way. so I finaly gave up said ok... was on it for 3 months.. now I suffer from arthritis that was caused by using pred. I normaly weight 110 or less (depending on the cd) and I blew up to 150lbs but I'm only 5'1 1/2. Now the docs wont treat me with pred anymore (didn't even work for the arthritis) now whenever I go for my er visit (every 1-2 months) I refuse, they listen.

So don't feel alone. Yes I'm not working now, been 2 years so I have the chance to sit around and try to get better..I'm still doing this.. would love to go back to work some day soon

xoxox hope everyone is having a pain free day!

I've stubbornly refused to go on Prednisone at the beginning of a flare, but let it get past the point of no return where I had to go on a higher dose than I initially would have. Best advice, just suck it up and live with the few months of side effects to get yourself out of pain faster. There's nothing better than the immediate relief preddy gives you, and nothing worse than its side effects. Get through it though is the best you can do when you're in a bad situation and then figure out how not to get in that situation again.

I ALWAYS refuse Prednisone. My Crohn's is awful, but the side effects that I get from the Prednisone are worse. I'll deal with pain and anything else, but side effects from a drug that is suppose to be making me feel BETTER? No thank you.

As much as I hate prednisone, I owe my life to it.  Yeah the side effect suck, but I would rather have them then the horrible uncontrolable pain from a flare.  Ive challeneged a lot of what doctors tried give me, or make me do....but when it comes to flares I know what it comes down to for me...prednisone. If my pain was litterally that bad I would have NOT left the hospital, what if something happens to you?  Sometimes we need to do what we have to do, but I wouldnt risk my health like that.

ivy6

Very well put! My fiance and i was just speaking of this. And how it's hard to say what one feels on the same meds someone else is on. I feel her pain because I go through the same side effects. For us it's not worth it, even though the pain is horrible(of the cd).  For the rest of you, the preds work for you. Great! it's just amazing to find something that works. Some of us are still trying to find that and it's not pred.

I love this forum!!  

Well I would never walk out of the Hospital if I was still in that kind of pain. 13 hours later and after 2 shots of Morphine and 3 shots of Delaudid and food passing through, the pain luckily subsided. If I felt any sign of danger leaving the hands of people who could help me I wouldn't of left. I felt the best thing for me was to get out!

The effects of Prednisone for me are horrible and I am afraid of long term damage. I have a bottle of old prednisone and will give it a chance, only if I can do a short term use to kick start things. I know this is not safe without a dr's orders and this is why I am trying to seek a dr this week to consult but if I can't get into one I think I may have to self medicate for a short term.

I would have went on the pred. I felt great on it last year when I had a bad flare. The relief was welcomed after being in pain, having swelling, and so much diarrhea. I had some weight gain, but other then that I felt great. Was able to eat again, and had so much energy! I was myself BEFORE Crohn's. My only issue with it was getting off of it, that's never fun. But I'm not a big believer in teas and broths as being a treatment for a Crohn's flare. Yes, I may use something like that WITH medical treatment. Or to get me through an off day, but I fully believe in medications to help get it under control. I've had that kind of pain before too, and it's not something I could tolerate on my own.

Besides, I went for YEARS without treatment because I didn't have a diagnosis yet. There were times where I did fine, and got by on not eating much, or doing the liquid diet. But the damage on the inside was still building up, and I ended up with  a very deep bleeding ulcer in my TI. I had no idea that damage was occuring in there. Personal decision I guess, we have to do what we feel is best. But I won't refuse medications for a flare. Hope you feel better!

If it doesn't work, then sure I can understand that. Then I would hope my doctor would too, and wouldn't even bother wanting to put me on something we knew didn't work. If not, I'd find me another doctor quick!

Pred is a hard core med. I haven't been on it a lot, so I'm not worried about long term effects right now. I wasn't worried about the short term effects as to me it was better then dealing with the flare. Crohn's can also have serious hard core effects if not treated, that you may not see for many years also. There have been examples here on this board, of people thinking they had a med free remission for decades on to end up in emergency surgery. Sometimes the damage is being done silently, I experienced that first hand. I guess the risks have to be weighed with the benefits.

So of course, if something doesn't work, then another medication should be looked at. To me that's not going home and drinking tea and broth. To me that isn't a treatment for a bad flare. If others view it otherwise, to each their own. I can only give my opinion.

I sure hope she finds a good doctor too. I'm still looking for a good GI myself. My last one was just awful, and so far I haven't found any that are good with Crohn's out here. I consider myself just lucky to have a good primary that helps me with it, or I'd be totally lost. Wonder why it's so hard to find a good doctor that these days!

As much as I hate Prednisone, it saved my life a couple of times. I'd rather deal with the Pred. then be in so much pain.

I wouldn't have done it either.  When I start to get a lot of pain, I quit eating.   During my last hospital visit I decided that I can starve myself and take my blood pressure every couple of hours at home.  I can even ignore myself like the nurses do and not have to pay anything to do it.

I take no meds.  My Crohn's affects my small intestine, so most meds won't do anything.  When I was on them, I ended up in the hospital, so I have no faith in medicine.

I eat Activia everyday, take primadophilus reuteri and slippery elm.  I think slippery elm has helped some with the pain, but I don't want to jinx myself!

As far as Ensure, I love it.  It has got me through some tough times of starvation with no ill effects.  It's kept me sustained.

Post Edited (Crybaybee) : 7/14/2009 7:14:59 AM (GMT-6)