Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Prednisone!!

Sun, May 27, 2018 2:54 PM

I am sure the majority of us with Crohn's disease, Ulcerative Colitis, and other autoimmune disorders have tested the waters with prednisone. I tend to swim in the waters of prednisone. I am currently on 5mg down from 40mg for a Rheumatoid Arthritis flare-up since April 3rd, 2018. Needless to say, I have gained so much weight because all I want to do is eat everything, my face looks like the moon, and I have experienced AWFUL muscle weakness. I feel like I have no strength in my legs and arms, especially my groin and upper arm areas. I shake when I lean on anything and when I have to hold something. It is super awful. Has anybody ever experienced muscle weakness with prednisone? If so, has it gone away? I can barely do anything! I tried physical therapy but it did not seem to help (maybe I need to continue PT). Let me know!!

stringedbee
Joined May 27, 2018

Fri, June 01, 2018 10:05 PM

Reply posted for stringedbee.

Yes, it's horrible. A necessary evil though, unfortunately.

I've been on about the same dose since February and it's looking like I'll stay on until late Summer. I hate taking it and have and had similar side effects as you.

When I was on last year, I gained a lot of weight and it took a long while to get rid of it. I'm experiencing as increase to my appetite or joint pains this time around, but do have the muscle weakness, trouble sleeping and awesome (not) sideburns.

There are a lot of other side effects. I found the book, Coping with Predinsone helpful in explaining them and giving me some decent information.

Hope this helps!

wagger
Joined Jun 1, 2018

Mon, May 28, 2018 10:01 AM

Reply posted for stringedbee.

Hi StingedBee. I had an infusion of Predinisone with my infusion of Remicade one week ago today. My muscles are still so sore, I feel like I'm walking through mud. And lifting my arms is work. I thought it was the Prednisone but I wasn't sure. After reading your message, I now know I'm not the only one. This is the first time I've received a full dose of Remicade and the first time they have included Prednisone in the infusion. I completely understand your feelings of weakness and hunger. Mine was a single dose, I'm so sorry you have to do this regularly.

AnneR95
Joined May 28, 2018

Related Topics

Starting Remicade Infusio...

shannonmiller
Joined Feb 20, 2023

I have Ulcerative colitis, am experiencing a bad f....

read more

Biologic- How to get it c...

orthopt2003
Joined Oct 8, 2021

Hello. My daughter 10 years old after almost 18 mo....

read more

Rinvoq

firestar
Joined Feb 26, 2014

Has anyone tried Rinvoq to manage their Crohn's sy....

read more

Welcome to the Crohn's & Colitis Community!

This website is associated with the Crohn's & Colitis Foundation.

Please read our Top 12 Rules before posting messages and sharing stories. Always be courteous and sensitive to others!

Intended audience. The Crohn's & Colitis Foundation Online Community is intended for patients and their caregivers, family and friends. The Community is not intended for industry representatives or advertisers and these individuals are not permitted to participate on the site.

Meet the Crohn's & Colitis Community! Browse our site to see what our community is talking about and find issues important to you.

Join in and share your stories. After you feel comfortable with our site, register to share your thoughts on a regular basis.

Stay secure. Remember that our site can be viewed by anyone on the Internet. With the exception of our registration and personal pages, search engines are available within this site. To guard your privacy, follow these simple rules: do not share your address, phone number, details about your family, or anything else you would feel uncomfortable with others reading. If you post your personal email, be aware that you may receive spam e-mail from spammers who gather addresses off of the web.

Read and react to posts with care. If you don’t agree or are offended by someone’s post, take a step back and think before you reply. Since we can’t talk in-person to each other, we must recognize that we may be misunderstanding stories or posts. Please be sensitive to others’ feelings and ask for clarification before acting out.

Search before starting new topics. To keep our message boards easy to use, please use the search bar to locate topics of interest before starting a new thread. If you start a new thread, please use obvious subject headings and words that will catch the attention of others. Topics will be archived after 21 days of inactivity. To view past topics and posts, click on archive topics within each of the forums.

Stick to our guidelines. To keep this site safe for everyone, please do not post: doctors' names, treatment facility names and treatment specifics, contact information for others without their consent, links to websites with uncertain content or advertisements, requests for fundraising, items for sale, requests for study, survey and/or questionnaire participation or provocative information.

Sharing photos. Please use good taste and appropriate images when adding photos to your profile or personal stories. Photos should be in .jpg format.

Not following the rules? Crohn's & Colitis Community moderators routinely scan the message boards and will delete tasteless posts. If you post inappropriate messages or pictures or use offensive language in a post on multiple occasions, you will be notified via email and your account will be inactivated.

Report foul play. Help the Crohn's & Colitis Community moderators by reporting anyone that posts inappropriate messages or pictures by clicking the 'Report Abuse' button under the message or emailing ccfacommunity@ccfa.org.

Questions or concerns? Please feel free to email us at ccfacommunity@ccfa.org with any questions or concerns. We want you to feel comfortable here.

Terms & Conditions. By posting your story, questions, concerns and other information on the Community, you grant the Crohn's & Colitis Foundation or its authorized agent permission to publish, reproduce, record and use your stories as Crohn's & Colitis Community or the authorized agent sees fit in any medium or forum in a manner which helps to further the Crohn's & Colitis Community mission. You agree to release and hold harmless Crohn's & Colitis Community from any and all liability by any third party that may arise from the release of information to any third party or by any third party and agree that all text and other content made by you, for you or the person for whom you are the parent/guardian, shall be the exclusive property of Crohn's & Colitis Community. The Crohn's & Colitis Community cannot verify every claim made by a third party contributor to our Community and is not responsible for the authenticity of information posted.

Thank you! The Crohn's & Colitis Community is successful because of members like you!

Thanks!
The Crohn's & Colitis Community Team

*Any postings on the Crohn's & Colitis Community site should not replace your physician's advice. Always check with your personal physician before taking any action regarding your health.