New Crohnie needing help! Have you ever struggled to get a flare-up under control with prednisone?

[lindsaydij]

Hi lovely Crohn's community,

After a VERY long 5-year battle, I was finally diagnosed with small bowel Crohn's in January of this year. Doctors also just discovered Colitis in my right colon in my most recent colonoscopy and I began on IV prednisone immediately in hospital (on Mar 15) for both diseases.

My response to steroid treatment was immediate -- after an 8-month flare from hell the pain had FINALLY stopped and within just a few hours of receiving my first IV treatment. The docs sent me home the next day to continue prednisone at home and I am taking 50 mg / day and am supposed to begin tapering slowly this coming weekend.

My treatments went really well for about a week and a half; I felt awesome, I no longer needed pain medication, I was leaving my bed (even my house!), and eating without problems or pain. It was a miracle! However, a lot of my symptoms began to return this past Saturday (Mar 26) after I had dinner out with a friend. Since then, I've been having the same chronic gut pain that I had before I started on prednisone. It's been constant since Saturday and doesn't change whether I fast, eat, have a bowel movement, or not. I had to take 20 mg of morphine last night to deal with the excruciating pain. :frown:

So now I'm totally freaking out! What have I done? Has anyone else experienced an initial response to prednisone and then a return of symptoms? Is my flare up just not under control or have I done something wrong? Could I have maybe responded to the IV treatments (it was a fairly high initial dosage) and then the 50 mg maybe isn't enough to keep things at bay? Why would I begin to recover and feel almost 100% and then revert back to flaring/pain? I'm so so desperate to feel better, and to have just a taste of it for a few days and then have it taken away is so incredibly cruel to my physical and mental well-being. I'm feeling so scared because things were initially looking so hopeful and I never want to go back to "that place" of feeling like you just want to die from your symptoms and pain and isolation. I'm new to these diseases so please let me know your thoughts or advice - anything is welcome at this point as I can't get in with my docs for a few weeks. :sign0085::sign0085::sign0085:

Thank you in advance!

 

[ronroush7]

Welcome. I am sorry you are having this trouble. Did you eat anything out of the ordinary? Maybe you need a stronger dose of prednisone. Have you told your doctor what is going on? I am just speculating. I hope you find some relief soon. Let us know.

 

[fuzzy butterfly]

Hi and welcome. Sorry for your need to be here tho.. i agree with Ron re the pred and i suggest to get back on to your doctor asap. Dont let things get to bad b4 you seek help. Best wishes and let us know how you get on..

 

[caretothepeople]

Ron and fuzzy butterfly are absolutely right - contact your doc to let them know about this. Starting a new medication can be a process and it's important to communicate any side effects with your doc so your treatment course can be adjusted.

Some questions to ask when you talk to the doc or see them again:

Questions to Ask Your Doctor

What is the name of the medication, and what is it supposed to do?
How long before you expect to see results?
What kind of track record in terms of effectiveness does this medication have?
What are the primary short-term side effects of this medication?
Does this medication have any long-term side effects that I should be aware of, such as diabetes, sexual side effects, or weight gain?
Are there ways to minimize these side effects?
How and when do I take it, and when do I stop taking it?
What foods, drinks, or other medications should I avoid while taking the prescribed medication?
Should it be taken with food or on an empty stomach?
Is it safe to drink alcohol while on this medication?
How do you monitor this medication? Are there specific tests you run to help monitor this medication?
What are you prescribing this particular medication over a similar medication?
How will we know when it’s time to stop taking this medication, or if the dose will need to be changed?
Is it safe for me to continue taking aspirin, Advil, vitamin and/or herbal supplements when taking this medication? Is there something specific I should avoid?
Is a generic version of this medication available?
What should I do if I miss a dose of this medication? Take it immediately when I remember, or wait until my next regularly scheduled dose?

 

[danielle.wilson411]

I agree with everyone else that you need to get in contact with your doctor right away to let them know what is happening. When I got out of the hospital I was told to start at 40mg of prednisone and taper each week. I was successful until I got down to 10mg and then symptoms started back almost immediately. My doctor had told me the minute I feel any kind of symptom I need to go back up to the mg I was taking that was working. I did and have been back on 20mg for the past few weeks afraid to taper down to 10mg again. My guess is that you are possibly still in your flare and you may need to have started on a higher dose to get it under control since my guess is that it was a bad flare if it put you in the hospital. But definitely call your doctor and let them know what is happening.

 

[Ally1234]

Hey, new chronie here too. Diagnosed February this year. Was in hospital for a few days with IV steroids that worked like magic. Then the doctors put me on 40mg to reduce by 5mg every two weeks. Currently on 30mg and while my bowel movements are mostly okay, the stomach and back pain, nausea and tiredness have all returned. All I can say is that everyone is different and also they say it is harder to get in remission the first time. It can take many months or even years for remission, please call your doctor if possible. They will be able to advise you but only if you tell them how you are feeling. Please do not feel like you have to suffer in silence, if the medicine is not working the doctors can help you.

 

[lindsaydij]

Hi everyone,

Thank you for your kind words and your help. Unfortunately my doctor is away until May 2 and I'm still stuck trying to figure things on my own. I was bumped up to 75 mg of prednisone a day, but am STILL having pain and was in the hospital over the last few days. I'm feeling so devastated because the steroids WERE working so so well and no one can tell me why my symptoms would suddenly re-emerge while I was taking a consistent dosage. My bloodwork is all normal so they have not done any imaging to look for abscesses or the like (although I wonder if that's what's going on here and has caused my pain symptoms to return).

Thank you all again for your help

 

[ronroush7]

What did they say while you were in the hospital? I hope you find relief soon. Does your doctor have an associate you could see?

 

[lindsaydij]

What did they say while you were in the hospital? I hope you find relief soon. Does your doctor have an associate you could see?

Hi Ron,

Thanks for being here. They didn't say too much while I was at the hospital, only that they were not understanding why my symptoms came back and that every blood and urine sample was looking totally normal. They tried to get a gastro to attend me but he's (also) out of town this week. I am having the worst luck with doctors when I need them. Now I am back at home feeling the lowest I have ever felt in my life. I'm very worried that I will never get into remission and have to live with physical pain for forever. Is there any hope if the prednisone doesn't work?

 

[ronroush7]

I am not a doctor. Maybe you should ask your doctor about a biologic. I hope your doctor gets back soon and put you on the road to remission.

 

[fuzzy butterfly]

Hi lindsaydij. There are quite a few other meds that can help. As Ron said biologics,immunosupressents ect,many are combined to combat the symptoms. Hang in there there is a light at the end of the tunnel,it can just take a while to find it and turn it on..
Hope you find the meds that work for you very soon. Best wishes

 

[DougUte]

Hi lindsaydij. Maybe you need to be on the higher doses of Prednisone for a while. I know it really hurts when the pain is going on. Like others have said, there are other treatments to be tried. Usually prednisone is short term anyway. They use it to get things under control then put you on another medication or medications for long term control.