Have you refused Prednisone treatment?

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LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/13/2009 10:28 AM (GMT -7)   
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!!!
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection in 98'
been on steroids, anti-biotics, Asacol, Pentasa, Immuran, Remicade, Humira...
Humira 12/14/08 and stopped after 3rd dose
Began LDN Feb 08


heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 7/13/2009 10:36 AM (GMT -7)   
I haven't and usually by the time I get on pred I'm really wanting to get things under control. Usually because I have to work and don't have the luxury of waiting to get better. I'd be tempted if if weren't for work. I know that before I got dxd my flares would sometimes go into remission on their own. Sounds like you've been dealing with this long enough to evaluate the risks. Maybe someone else can say if they've ever tried this and regretted it. There are a lot of different alternative ideas to try and since we're all different, you never know what might help. All these drugs we take certainly have their risks too. I guess it's how comfortable are you trying to do things on your own and how quickly can you get medical care if things worsen. Good luck!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/13/2009 10:39 AM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 7/13/2009 10:47 AM (GMT -7)   
Personally, I would have went with the usual. Especially being in that much pain, and having that much inflammation. Prednisone probably would have had you feeling great in about two days, and to me that is worth the complications that a month or two worth of what prednisone can do.
23 y/o Male; Dx Crohn's Disease in 2001 at age 14.
Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.
CD returns in October 2008, Starting the Maker's Diet June 17, 2009
Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x
Been on: Prednisone, Flagyl, Cipro, Imuran, Entocort, Remicade
Kyrie eleison!


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 11:34 AM (GMT -7)   

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!


24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/13/2009 11:35 AM (GMT -7)   
nanners -I stopped the LDN a few weeks ago. my holistic dr. talked me into stopping and now I am regretting it. I just wasn't sure if it was working or not for me. Maybe it was since I flared so hard coming off of it. I would like to get back on that ASAP. I have a Sphincter Repair surgery in two weeks so I have decided I will start back up on the LDN after that.

Whats really hard about all this decision making is that I am not being followed by anyone at the moment. I just can't seem to find a dr I like. I am making an appointment with yet another this week. I am praying I find one soon because I need some stability in my medical treatment!
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection in 98'
been on steroids, anti-biotics, Asacol, Pentasa, Immuran, Remicade, Humira...
Humira 12/14/08 and stopped after 3rd dose
Began LDN Feb 08


bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 7/13/2009 11:42 AM (GMT -7)   
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.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily), Prednisone (8 mg daily...for a few more weeks), Flagyl (250 mg every other day), Nexium (40 mg daily)
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).
**GOAL of one day being immunosuppressant free...still working on my doctor on this one but I am a world traveler who desperately wants to go to Africa one day!


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/13/2009 12:01 PM (GMT -7)   
Thank you for all your responses thus far.

I forgot to mention I am home and yet to eat anything - been drinking a lot of fluids and broth. Tried an ensure and wasn't sure if it bothered me or not. Still on the fence about those drinks since they are so full of sugar and fake stuff. No pain to report. Very sore from the trauma my intestines went through for 2 days but no pain. I believe this is because I am not eating and having food pass through the tunnel of pain. I could take some time to take off of work to rest if I wanted. My boss is very understanding.
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection in 98'
been on steroids, anti-biotics, Asacol, Pentasa, Immuran, Remicade, Humira...
Humira 12/14/08 and stopped after 3rd dose
Began LDN Feb 08


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 7/13/2009 1:41 PM (GMT -7)   
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.
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 1:52 PM (GMT -7)   
Allison77
You took the words right out of my mouth!!! (or fingers however you want to look at it ,lol)
 
 
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/13/2009 3:46 PM (GMT -7)   
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.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/13/2009 4:13 PM (GMT -7)   
I think we need to remember that people experience varying degrees of side effects from Pred. For many of us, the side-effects are tolerable, but for an unfortunate few the side-effects are severe enough to outweigh the benefits that may be gained from taking the drug.

I think it is hard for any of us to support or discourage Laury's stance, as we can only generalise from our own experiences, and have very little idea of what Laury experiences herself.

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 4:18 PM (GMT -7)   
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!!  
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/13/2009 4:31 PM (GMT -7)   
One thing that you might like to consider, though, is that some health systems require patients to prove that they are unresponsive to steroid treatment before approving treatment for other, more expensive, drugs.

It's a catch 22, really. The more expensive drugs may stop you from flaring and may keep the doctors from trying to get you to take steroids... but you have to *take* the steroids before you can access the more expensive drugs.

This may not be true where you live, but it is true in my country, and I think this scenario might be worth investigating and considering before you make your decision.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/13/2009 4:42 PM (GMT -7)   
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.
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection in 98'
been on steroids, anti-biotics, Asacol, Pentasa, Immuran, Remicade, Humira...
Humira 12/14/08 and stopped after 3rd dose
Began LDN Feb 08


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 5:06 PM (GMT -7)   

Ivy,

This is very true. I live in Canada(Montreal) and 3 different doctors had put me on pred... the last time I was on it for 3 months and still getting flar up and going to the er..when finaly my GI decided to go with Remicade.

They will try allot of meds before going to something very $$$

Laury,

I hope you find a doc that will help you get what you need. Like I say the only person who knows you best and what is usualy best for you, is you! Take care xoxo


24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/13/2009 5:20 PM (GMT -7)   
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!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.

Post Edited (Jen77) : 7/13/2009 6:28:29 PM (GMT-6)


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 5:33 PM (GMT -7)   
Me personaly It's not about refusing meds. I know for a fact I couldn't live without the meds I'm on. Right now off remicade and I'm killing for something new to work (waiting to start humira) it's more about not taking something you know wont work. Like for me i know pred doesn't work, so why take it (regardless of it helping your flars or not it still causes side effect regardless of you knowing it or not just like all meds the side effect can come in 5 years from now you just never know) especially preds, it's a hard core med.
 
I think everyones imput is right, no one can be wrong especially in knowing your own body.
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/13/2009 7:36 PM (GMT -7)   
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.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 7:58 PM (GMT -7)   
Jen77
I agree with you 100%!!
 
I too wasn't diagnosed for 10 years. I always believe to this day, my CD wouldn't be as bad as it is now if I was treated right away!
 
Again I agree with you, if something doesn't work, your doc should aggree just as much and shouldn't try to put you on it. (My doc has stop putting me on pred) I also don't believe the smartest idea is broth and not dealing with it. But If i'm not mistaken laury is looking for/or found a new doc. Hope all goes well with her and she finds the treatment that works for her . and for me too!

24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/13/2009 9:20 PM (GMT -7)   
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!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/13/2009 9:22 PM (GMT -7)   
I'm also with you on that. Where are you from? Montreal, Canada for me. It's very hard to get/find a good doctor, or wait for a year to get a apt. Best of luck to you.

24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/14/2009 4:31 AM (GMT -7)   
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.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 7/14/2009 5:02 AM (GMT -7)   
For me pred does not work. I was on it for 1 1/2 years even at extremely high doses (120mg) and still ended up on TPN for 5 weeks and still getting a resection. When I flared again shortly after surgery (while still on pred) my dr still kept me tapering and put me back on imuran and now remicade.
BUT for me to get approved for Remi by my insurance I had to show that pred and imuran did not work.

I wouldn't bother going on pred again at this point.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol

Presently taking: now on Remicade, Imuran, probiotics, calcium, B12, nortryptiline.
For asthma I take Advair 250, singulair


Crybaybee
Regular Member


Date Joined Oct 2008
Total Posts : 29
   Posted 7/14/2009 6:12 AM (GMT -7)   
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! shakehead
 
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)

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