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Sooo many side effects

Sat, October 26, 2019 12:01 AM

I have been diagnosed with Crohn's since 2006 and have tried or taken almost every different medication out there. I am currently in a bad flare and have been trying to find a fix since May. This has been the longest and most difficult knowing the treatments in the past either don't work or cause too many side effects and reactions that I can't take them. I wanted to just share two warnings with you all so maybe you don't end up where I am.

First is Remicade. The biggest and most important thing with this treatment is that it is imperative that you stay on it consistently. If you go on and off of it because you feel better and don't think you need it at the time you will eventually become immune to it and it will no longer work. This happened to me and is one reason I am trying to find yet another option so I don't have to resort in surgery.

And second is Prednisone. Prednisone is definitely not a long term option as many of you probably know. Through the years I was on and off of it many times using the tapers to get flares under control quickly. I also had the misfortune to become septic due to a kidney stone blockage which caused havoc to my body and flared my Crohn's to cause me to be on prednisone for a good 4 months. Shortly after this I began experiencing pain in my ankles. I went to a sports medicine doctor and was diagnosed with a bone disorder called AVN or Avascular Necrosis which means my bones were actually dying due to a lack of blood flow to the bones in specific areas of my body. My bones were becoming brittle and crumbling inside me and it was due to the Prednisone. First it was both ankles then my hip and my right shoulder and most recently in both knees. The pain is horrible and the range of motion is barely any anymore. I can't do half of the things I used to. I have since had a full hip replacement and a right knee replacement. I should have ankle replacements however they are not nearly as common or advanced so I just deal with the pain and limping. The other thing is that it will never stop progressing even though I refuse to take the prednisone anymore. So, Please be careful how much you take it, how long, and how many times. It is bad news if it is prescribed as a first option every time.

Thank you all and I hope this helps someone out there.

Brandidcarey
Joined Oct 25, 2019

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