I am newly diagnosed with Crohn's disease. I have had 'issues' for at least 7 years yet despite going to the doctors many, many, many times I was told it was so many different things and I continued to suffer. Any way my GI is meant to be one of the best in Sydney. She wants to start me on prednisone. My question is, why not a milder drug? I asked her the question and she didn't really give me an answer, just that prednisone is best for me. I am so scared of the side effects. I feel trapped with little choice or control. I feel so lost right now and no one in my real life understands. They just want some miracle for me to get better and be the person I used to be. It is all just so hard to deal with. I would really appreciate any feedback.
Does this sound right?
- Thread starter BecDoll
- Start date
Help Support Crohn's Disease Forum:
Firstly, not all drugs can be used in a flare. The 'milder' drugs like Pentasa and other 5-asa drugs are used to maintain remission (stop inflammation coming back) rather than reduce the inflammation.
Secondly, prednisone is pretty fast acting (a few days). Some of the other 'stronger' drugs like immune suppressants and biologics can take 3 months to have an effect.
So the idea is the doc will put you on pred to quickly reduce the inflammation, then start you on one of the other drugs and taper the pred once the other drugs are working.
Remember, not everyone gets all the side effects of pred. Personally, I was a bit emotional and put some weight on (though I needed it!). But it was definately worth it to get some relief from the pain.
By the way, if you do go on pred you must take calcium and vit d supplements.
Rebecca.
Secondly, prednisone is pretty fast acting (a few days). Some of the other 'stronger' drugs like immune suppressants and biologics can take 3 months to have an effect.
So the idea is the doc will put you on pred to quickly reduce the inflammation, then start you on one of the other drugs and taper the pred once the other drugs are working.
Remember, not everyone gets all the side effects of pred. Personally, I was a bit emotional and put some weight on (though I needed it!). But it was definately worth it to get some relief from the pain.
By the way, if you do go on pred you must take calcium and vit d supplements.
Rebecca.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 25,247
Hi Bec,
I am assuming that you currently have active disease and are experiencing a flare. If that is the case then it is normal to be prescribed Prednisone to bring the inflammation under control before you move onto something milder. In most cases milder drugs are just not effective in knocking the inflammation on the head.
I have no doubt that others with first hand experience with Prednisone will be along to assist you with your questions and concerns.
All the best,
Dusty
Edit - see someone has already been along and beat me to it! :lol:
I am assuming that you currently have active disease and are experiencing a flare. If that is the case then it is normal to be prescribed Prednisone to bring the inflammation under control before you move onto something milder. In most cases milder drugs are just not effective in knocking the inflammation on the head.
I have no doubt that others with first hand experience with Prednisone will be along to assist you with your questions and concerns.
All the best,
Dusty
Edit - see someone has already been along and beat me to it! :lol:
Entchen
Chief Dandelion Picker
- Joined
- Mar 14, 2010
- Messages
- 1,733
Hi, BecDoll
Welcome to the forum - we're glad to have you here.
The old regime for Crohn's was to use mild drugs until they stopped working, and then move up to stronger meds over time if the milder ones stopped being effective. Newer thinking, which has some research evidence to support it, is to take a "top down" approach and hit the disease hard at diagnosis, try to knock the Crohn's into remission, and then (probably) use milder drugs for maintenance. It might be that your physician is taking this approach. Or as mentioned above, it could also be that your level of inflammation and other problems is so severe that she believes Prednisone might be the only medication to handle things right now.
You'll find lots of information about pred and its side effects on this forum. I haven't been placed on it myself, and understand your concern about side effects because I share that concern. This isn't to say that I wouldn't take the drug (especially since so many people here on the forum have really benefited from Prednisone), but I would certainly first be asking my GI to take a couple of minutes to have a conversation with me about whether there *might* be other options.
I'm so sorry that you are feeling trapped right now. You do have choice and control, but sometimes it might be that what's under control is your emotional response to being sick rather than actual control over whether you get better. And isn't it wonderful that your family and friends care about you so much that they want you to be cured. It must be hard to know that Crohn's isn't curable, though, even with these cheerleaders urging you to beat it and move forward. It's hard work being sick, and finding a way to negotiate family and friends can sometimes be a part of it. Hang in there, and please know that you've got lots of support here as you start making choices about your treatment and about dealing with Crohn's.
Welcome to the forum - we're glad to have you here.
The old regime for Crohn's was to use mild drugs until they stopped working, and then move up to stronger meds over time if the milder ones stopped being effective. Newer thinking, which has some research evidence to support it, is to take a "top down" approach and hit the disease hard at diagnosis, try to knock the Crohn's into remission, and then (probably) use milder drugs for maintenance. It might be that your physician is taking this approach. Or as mentioned above, it could also be that your level of inflammation and other problems is so severe that she believes Prednisone might be the only medication to handle things right now.
You'll find lots of information about pred and its side effects on this forum. I haven't been placed on it myself, and understand your concern about side effects because I share that concern. This isn't to say that I wouldn't take the drug (especially since so many people here on the forum have really benefited from Prednisone), but I would certainly first be asking my GI to take a couple of minutes to have a conversation with me about whether there *might* be other options.
I'm so sorry that you are feeling trapped right now. You do have choice and control, but sometimes it might be that what's under control is your emotional response to being sick rather than actual control over whether you get better. And isn't it wonderful that your family and friends care about you so much that they want you to be cured. It must be hard to know that Crohn's isn't curable, though, even with these cheerleaders urging you to beat it and move forward. It's hard work being sick, and finding a way to negotiate family and friends can sometimes be a part of it. Hang in there, and please know that you've got lots of support here as you start making choices about your treatment and about dealing with Crohn's.
Last edited:
overwhelmed by fresh diagnosis... (long winded)
Hi BecDoll,
Sorry to hear you are suffering.
I'm afraid I totally know how that 'lost' feeling tastes.
Not fun, but you can and will work your way past it.
For me, the key is to realize that yes, as of now you feel this way,
and maybe think you will always feel this way...
but it is helpful to realize that you will not necessarily always feel this way.
My guess is that you will move through these feelings and get to a different place in your own good time.
I have learned that Crohn's is a context.
It affects every aspect of our lives.
Not just our physical experience, but also our thoughts and feelings.
It is into our time, relationships, job, hobbies, finances, sleep, everything.
There is nowhere to hide.
Even in times when the pain and bowel distress give us a break,
we can be riddled with fear, weakness and insecurities.
It can often seem like a nightmare from which we cannot wake up.
But there is another side.
We will be challenged to sort our minds and find our strength.
We gain a new appreciation for the good moments.
We are more grateful than ever for even our smallest blessings.
When Crohn's corners us, we are left no option but to transcend.
When it pushes us to the edge, we get a chance to prove our true character and strength.
Yes, "It is all just so hard to deal with."
Nods all-around from your fellow Crohnnies.
But:
We are stronger than we believe.
You can and will endure.
You will learn more about the disease and life and yourself.
Be gentle with yourself for now, it is very early in a looong journey.
It may sound silly now, but there are opportunities to grow and rise and shine.
When I am laying on the floor moaning, holding my belly and begging for mercy...
I just cannot see how I can continue to live like this...
when it feels like rats are gnawing on my guts nonstop, night and day...
I cannot see in this moment, how I could ever survive to the next moment.
When the pain and bleeding stop my clock, and I'm 'doing hard time'...
nothing and noone can help me, the way my own resolve can.
The more we survive, the more we can survive.
We keep marching onward, toward the promise of better days.
Tomorrow is promised to noone.
We won't always wake up today.
Many others did not wake up today.
Any good we find today is a bonus.
Down to the smallest, all these glorious miracles around us are precious gifts.
We're gone tomorrow.
Sooner or later, we all fall down, and dust blows away.
Let's find a way to appreciate today.
And just maybe, we can share today again tomorrow.
Despite all these illusions, it's all we ever have.
It's all anyone ever has...
I'll second what Kelly said:
the oldschool approach was 'step-up', where as the cutting edge new approach to Crohn's flareups is 'step-down',
which means to start with stronger drugs to get a flare under some kinda control, and then taper to less severe drugs as ongoing maintenance.
The goal is always to obtain and maintain remission, to regain quality of life.
No matter how bad it gets, and how impossible it all can seem, try to take consolation that it could always be worse.
I shudder to realize, it can always be worse.
There are good people who are sicker than me, who stay cheerful and positive.
There is nothing I admire, like a survivor.
let's keep our fingers crossed for better days,
hang tough,
Walt
ps we learn to 'make hay when the sun shines',
we gotta make our good moments count!
Hi BecDoll,
Sorry to hear you are suffering.
I'm afraid I totally know how that 'lost' feeling tastes.
Not fun, but you can and will work your way past it.
For me, the key is to realize that yes, as of now you feel this way,
and maybe think you will always feel this way...
but it is helpful to realize that you will not necessarily always feel this way.
My guess is that you will move through these feelings and get to a different place in your own good time.
I have learned that Crohn's is a context.
It affects every aspect of our lives.
Not just our physical experience, but also our thoughts and feelings.
It is into our time, relationships, job, hobbies, finances, sleep, everything.
There is nowhere to hide.
Even in times when the pain and bowel distress give us a break,
we can be riddled with fear, weakness and insecurities.
It can often seem like a nightmare from which we cannot wake up.
But there is another side.
We will be challenged to sort our minds and find our strength.
We gain a new appreciation for the good moments.
We are more grateful than ever for even our smallest blessings.
When Crohn's corners us, we are left no option but to transcend.
When it pushes us to the edge, we get a chance to prove our true character and strength.
Yes, "It is all just so hard to deal with."
Nods all-around from your fellow Crohnnies.
But:
We are stronger than we believe.
You can and will endure.
You will learn more about the disease and life and yourself.
Be gentle with yourself for now, it is very early in a looong journey.
It may sound silly now, but there are opportunities to grow and rise and shine.
When I am laying on the floor moaning, holding my belly and begging for mercy...
I just cannot see how I can continue to live like this...
when it feels like rats are gnawing on my guts nonstop, night and day...
I cannot see in this moment, how I could ever survive to the next moment.
When the pain and bleeding stop my clock, and I'm 'doing hard time'...
nothing and noone can help me, the way my own resolve can.
The more we survive, the more we can survive.
We keep marching onward, toward the promise of better days.
Tomorrow is promised to noone.
We won't always wake up today.
Many others did not wake up today.
Any good we find today is a bonus.
Down to the smallest, all these glorious miracles around us are precious gifts.
We're gone tomorrow.
Sooner or later, we all fall down, and dust blows away.
Let's find a way to appreciate today.
And just maybe, we can share today again tomorrow.
Despite all these illusions, it's all we ever have.
It's all anyone ever has...
I'll second what Kelly said:
the oldschool approach was 'step-up', where as the cutting edge new approach to Crohn's flareups is 'step-down',
which means to start with stronger drugs to get a flare under some kinda control, and then taper to less severe drugs as ongoing maintenance.
The goal is always to obtain and maintain remission, to regain quality of life.
No matter how bad it gets, and how impossible it all can seem, try to take consolation that it could always be worse.
I shudder to realize, it can always be worse.
There are good people who are sicker than me, who stay cheerful and positive.
There is nothing I admire, like a survivor.
let's keep our fingers crossed for better days,
hang tough,
Walt
ps we learn to 'make hay when the sun shines',
we gotta make our good moments count!
Last edited:
- Joined
- Apr 1, 2010
- Messages
- 516
Yep sounds right to me. I fought prednisone for the longest time and now wish I hadn't. It is the only thing that has brought me any real relief and now it looks like I am heading for surgery. Maybe if I hadn't fought it for so long, I would not be in this situation. The side effects are worth the relief - for me anyway.
ameslouise
Moderator
- Joined
- Feb 11, 2010
- Messages
- 2,932
I agree with Kelly - the side effects of Pred are worth the quick relief it brings!
We all have a love/hate relationship with Pred. Taken properly and carefully, and tapered properly, it can literally be a lifesaver.
More concerning to me is that your doc did not answer your questions. She should be taking the time to explain the disease and the treatment, and what the next step is for you after the Pred.
Don't be too scared of the side effects. I actually lost weight on pred, and didn't get moon face or insomnia. It treats everyone differently.
Good luck and I hope you start feeling better soon. -Amy
We all have a love/hate relationship with Pred. Taken properly and carefully, and tapered properly, it can literally be a lifesaver.
More concerning to me is that your doc did not answer your questions. She should be taking the time to explain the disease and the treatment, and what the next step is for you after the Pred.
Don't be too scared of the side effects. I actually lost weight on pred, and didn't get moon face or insomnia. It treats everyone differently.
Good luck and I hope you start feeling better soon. -Amy
Oh sweetie, I'm so sorry you've got to go through this ((((((hugs))))). I've been on and off of pred a lot over the years - like others said it starts working really quickly and is very effective. I hate the side effects, but nothing else stops my flares. I'm really glad you found this site - the people here are really great; they have tons of info/experience, and they really care about you, too.
