Dont wanna take Steroids

[nikki7]

Just got diagnosed in June with crohn's by a gi specialist and I have not been put on anything but Lialda until I see the crohn's doc in August. I have heard of so of many bad side effects about steroids and I dont want to take them. Im just wondering if insurance will make you go through the drug merry-go-round first. I would rather just skip steroids and get started on something else if doc will let me.

Maybe I'm just freaking myself out, but if i can avoid emotional outburst, acne, moon face, joint pain, gaining weight, feeling exhausted, ect ect ect! I have got enough problems with gi track alone without more added to it.

 

[Walt]

sorry you joined our club...

I have heard of so of many bad side effects about steroids
Maybe I'm just freaking myself out

Good Day Nikki,
Sorry for your CD Dx.
I understand the physical, mental and emotional burden.
Freaking-out can definitely be a part of working through our challenges.
I might be more concerned if you were newly Dx'd and Not freaking out!
I do not believe you are operating outside a healthy range of response.

I just wanted to say that yes you should research lots of things,
but the only thing that matters is how a drug affects you.

Not accepting treatment...
because of negatives expressed by others is not the wisest path.

Yes in many ways we are an IBD club & group.
But the most meaningful approach to various treatments is to try your luck.

For me, highest value comes from individual experience on that one.
I find that most treatments seem to help someone or another.
Leave no stone unturned in your quest for answers & wellness!

Yes, different agendas will try to direct you toward either top-down or
bottom-up approaches to treatments & medication.
Each must do their own homework on the pros & cons of those options.
The stakes are too high and our disease too individual to go blithely.

wishing you only well,
Walt

ps
speaking only for myself:
Yes I fear the risk & downsides of all of these drugs...
but I fear the damage of Crohn's disease more.
YMMV - good luck



Crohn's takes guts!

 

[nikki7]

That is so true Walt. I know better than to google too much of anything concerning being sick....lol....It will only make a person sicker and feel like they are dying. I always try to be ahead of the game concerning "everything" it seems. I will be glad to finally get into the crohn's doctor and get some kind of direction. Thanks for the advice

 

[Clash]

Welcome to the forum nikki7.

You may approach your GI about entocort. It is a corticosteroid like prednisone but it is GI specific instead of systemic so most don't experience any of the nasty pred side effects with it.

It can depend on where your disease is located but entocort is released from ileum down using a pH mechanism so if your disease is lower than your ileum is may be a good alternative for you.

 

[xmdmom]

The side effects depend to a great degree on the dose and length of therapy. Different people have different effects.

My son was on steroids (age 19) beginning at a high dose and weaning over 6 or 8 weeks and while he gained weight, he just looked healthy as he gained the weight he had lost from Crohn's. I recall he had some minor side effects while the dose was high the first couple of weeks but really didn't complain of any significant issues. He was glad to feel good and have an appetite.

It's true that some people really have a terrible time with steroids (mood or other issues), but many don't. If you go on steroids, it's important that it's for the shortest amount of time possible and that your doctor begins a maintenance medication simultaneously as these maintenance meds need time to work. Some take 2 to 3 months to become completely effective.

As Clash says, entocort might work depending on the location of the Crohn's and its current severity. That said, entocort isn't a longterm maintenance drug as it loses its effectiveness in most people after a while and also has some risks in terms of bone loss when used for a long time.

I'm sorry you're dealing with this.

Best wishes!

 

[Lady Organic]

you can ask your GI about exclusive Enteral liquid diet.

 

[Hope345]

the last thing we wanted to put our daughter on was Prednisone, but now I am so glad it exists. It is the only thing that works fast and can stop her flare when it is severe.

When she was only 13 it seemed to hit her pretty hard, but now that she is 16 she tolerated it so much better.

Some things to consider
eat a low salt diet while on Prednisone
Starting at 30 mg instead of 40mg seemed to work as well, with less side effects
drink calming teas: chamomile
Try to keep stress out of your life, if possible
And realize that the side effects are temporary and you will make lots of friends on here that will give you so much support!!

hoping you find the right treatment for you....
sending lots of support your way

 

[Caitlin84]

I have been on steroids several times and they hit me differently every time. Sometimes I have almost no side effects, other times lots. I have quite a few this time, but different than any I've had before. They are also usually a temporary measure to halt flare ups. They often work very well and can prevent a lot of damage to your system. Ultimately any medication can have side effects. Good luck!

 

[nikki7]

Thanks guys, I had an MRI on Tuesday of the small bowel and it came back in good condition. So the doctor thinks the Lialda is working to bring down the inflammation. Which is a good thing ....But I still get pains and sever cramping in my stomach and burning pain on my right side under rib cage. He told me that when I get to the crohns doc that she may add something else to help.

 

[UnXmas]

I completely understand. Some people cannot tolerate steroids due to various side effects, and there are other options for treatment when necessary. However, the other options may not be as effective as steroids, or may take longer to work, so you - and your doctors - have to weigh the pros and cons.

You won't necessarily get the side effects you're worried about. I've taken steroids and have had no sign of some of the most common side effects. Though you will almost certainly get some side effects, you won't necessarily get the ones that worry you. Side effects increase over time, so a short course of steroids may not cause you many, and they also depend on the strength of the dose you take. You can also treat the side effects in various ways (other meds, diet changes, etc.).

Given all this, I would give the steroids a try. The side effects that develop from a short dose are almost certainly not going to be permanent. But you could discuss it with your doctor first; have a plan about what you'll do if certain side effects arise, and discuss what other options there are should you find that problems do develop.

 

[UnXmas]

Also, if you're lucky you may get some positive side effects, like tons of energy and euphoria.

 

[JMC]

Maybe I'm just freaking myself out, but if i can avoid emotional outburst, acne, moon face, joint pain, gaining weight, feeling exhausted, ect ect ect! I have got enough problems with gi track alone without more added to it.

Until May this year, I had never taken steroids, in part because I had read about the symptoms and had declined that course of treatment when my doctor offered it to me. I now realise that was a mistake.

With any course of treatment, I think the most important thing is to see how your body reacts to it. Reading about other people's issues with a particular drug is a bit like reading about other people's symptoms with Crohn's, some things we have in common, many things we do not. If steroids turn out to be a treatment that causes nasty side effects for you, then stop it and try something else, the side effects are quickly reversible.

In my case, in April I was having a nasty flare and was prescribed budesonide for 3 months. Within 48 hours, my symptoms improved significantly and when I recently had a MRI scan and colonoscopy, I was told that I had no signs of disease at all. I have had precisely zero side effects. No mood swings, no acne, no weight gain. Nothing.

Good luck with whatever you chose.

 

[Lady Organic]

budesonide is known to cause much less side effects than prednisone. I wish I could take that instead of pred, but unfortunately with disease located in left colon and rectum, this is not an option in such case. i think its good for small bowel.