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Prednisone


Fri, July 09, 2021 6:50 AM

Hi all

My 13 year old daughter was diagnosed with Crohns late last year. She went on Prednisone and Azathioprine. The Prednisone worked really well. She put on weight, regained her confidence and was happy, plus there were no signs of Crohns. 

She came off Prednisone and her appetite declined again. We initially thought it might be Prednisone withdrawal. But within around 6 weeks she had another Crohns flare up. We are still learning about food triggers and I think we became complacent with diet choices because everything seemed to be back to normal when she was on the drug. 

Is it worth trying Prednisone again but doing it right this time (strictly no foods that trigger Crohns). Has anyone had longer term success, via second or more tries of Prednisone? 

FPO Syrah66
Joined Jul 9, 2021

Tue, July 27, 2021 12:00 AM

Reply posted for Syrah66.

Hi! I am 21 years old and have had UC for about two years now. I have been on Prednisone pretty much since November... It is diffinetly a drug you do not want to be on for a long time. I have developed a virus called CMV in my intestines and fungal overgrowth due to being on Prednisone. Both are tricky and hard to get rid off and I may have to be on an antiviral my whole liek because of it.  I am currently taking an infusion called Remicade and it has been the only thing that has helped me besides steroids. I have Ulcerative Colotis, not Chrons, but the treatments are usually very similar. I have also tried Entyvio and Humira and had no luck. Remicade seems to be working and keeps my symptoms manageable. My GI doctor and I are currently trying to get me off of Prednisone because of the long term side effects, but we are having trouble gettine me off of it even with a slow taper because I have been on it for so long an dmy body is relying on it to keep the inflammation at bay. Prednisone definetly has saved my life, literally, but you ideally want to find another type of medication that will work such as Biologics likes Remicade and Stelera for the long term. Ask your daughter's GI doctor about biologics! There are many different types and not every one works on every person. It took me three biologics to find the right one. but it is so worth it. I am hoping to be completely off of Prednisone within the next month. I hope this helps and good luck. Chrons and Colitis are tricky and it can take time to find the right medication that works for you.

FPO juliaw
Joined Jul 26, 2021

Mon, July 26, 2021 11:58 PM

Reply posted for Syrah66.

Hi! I am 21 years old and have had UC for about two years now. I have been on Prednisone pretty much since November... It is diffinetly a drug you do not want to be on for a long time. I have developed a virus called CMV in my intestines and fungal overgrowth due to being on Prednisone. Both are tricky and hard to get rid off and I may have to be on an antiviral my whole liek because of it.  I am currently taking an infusion called Remicade and it has been the only thing that has helped me besides steroids. I have Ulcerative Colotis, not Chrons, but the treatments are usually very similar. I have also tried Entyvio and Humira and had no luck. Remicade seems to be working and keeps my symptoms manageable. My GI doctor and I are currently trying to get me off of Prednisone because of the long term side effects, but we are having trouble gettine me off of it even with a slow taper because I have been on it for so long an dmy body is relying on it to keep the inflammation at bay. Prednisone definetly has saved my life, literally, but you ideally want to find another type of medication that will work such as Biologics likes Remicade and Stelera for the long term. Ask your daughter's GI doctor about biologics! There are many different types and not every one works on every person. It took me three biologics to find the right one. but it is so worth it. I am hoping to be completely off of Prednisone within the next month. I hope this helps and good luck. Chrons and Colitis are tricky and it can take time to find the right medication that works for you.

FPO juliaw
Joined Jul 26, 2021

Sat, July 24, 2021 6:08 PM

Reply posted for Allison.

I can also only speak regarding my own experience. I have ulcerative colitis and was given Prednizone on and off for a year and a half. It was helpful at first the couple of times, but then it became almost ineffective and I was still sick while taking it. I switched doctors and my new doctor wanted to get me off Prednizone right away. He says it can weaken the bones and should not be used for long periods of time. I have been off Prednizone for over 2 years and am now on Humira. 

FPO Allison
Joined Jul 24, 2021

Sat, July 10, 2021 6:02 AM

Reply posted for Syrah66.

I can only speak from my own experience but I would be cautious in attempting a second round of prednisone so soon. I was diagnosed with crohns in feb 2020. Since then i have been off and on prednisone 4x. It is extremely hard on the body and the weight gain is a future hardship because it stays on and is multiplied each round of pred. That creates more problems that im still dealing with. Also, my thyroid is not sure what to do with the added prednisone steroid/hormone like. Although i have battled hyperthyroidism as well as hypo, and been on syntroid for over ten years. Currently, I am on Budesonide 9 mg each morn. It is more specific to crohns and although it is also a steroid, it is much less harsh and seems just as effective as pred. Both prednisone and Budesonide are only meant to be short term. My next step in the medical maze is Stelara.

FPO Timmi
Joined Jul 8, 2021

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