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Eosinophilic Fasciitis: Looking to connect with others
Autoimmune Diseases | Last Active: Aug 8, 2023 | Replies (34)Comment receiving replies
Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4 months starting at 50mg. I felt that the side effects added a lot more misery. I have been off the medication for about 5 weeks now. I still have issues with tightness in my arms and calves and knees.
I am a lot better than I was a year ago though. I am in the process of reaching out to a specialist at UC Davis.
It can be a lonely journey.
I have been in touch with a lady from New Mexico who also has this rare disease. It has been very uplifting to just talk about.
I think it is great that you get to do PT hopefully that will help your mobility.
If you ever feel like talking you are more than welcome to call me.
Best regards
Maria
Replies to "Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4..."
Hello Maria @mmr65, You will notice that we removed your telephone number to protect your privacy since Connect is a public forum that anyone can see. As @becsbuddy also mentioned, members can exchange contact information using the private message function of Connect. See the Help Center for more information on how to send a private message and other features of Connect - https://connect.mayoclinic.org/help-center/.
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@mmr65 @svcfeo May I suggest that you exchange phone numbers in Private Messages. You can find private messages by going to the top of this page and clicking on the person icon. A drop down menu comes up and you want to click on messages. Try it! It’s easy!