I have been on varying doses of prednisone, 40mg to 20mg and back.
About 15 days ago, I started getting horrific pain and muscle spasms across my chest and around my mid back. I even went to the ER thinking I might be having a heart attack.
Thankfully, that was not the case.
Saw my gastro doc last Monday or a flexible sigmoidoscopy and 3 more biopsies. Told him about the back and chest pain and he sent me to an orthopedic doctor. After xrays, he discovered a sever fracture in my spine at level T5. I had to have an upper body brace made to fit my body. I will be in this for 8 to 10 weeks in attempt to avoid surgery. He is completely convinced that this fracture is prednisone related. Studies show that within one month of starting , the risk of spinal fractures really increase.
[ilink url=”https://www.ncbi.nlm.nih.gov/pubmed/26600979″ style=”note” title=”prednisone steroids and IBD”]Risk factors for osteoporosis in inflammatory bowel disease patients.[/ilink]
I was wondering if anyone else has had bone issues related to prednisone use??
I am hoping, if my biopsies are good, my gastro will start reduction of this med. Just really interested to know if any of you have had bad side effects from prednisone. The one thing I am frightened of is the my ulcerative colitis symptoms will start coming back with reduction. Last time I tried 10mg a day, they did. I have been on Lialda, Prednisone and Bently since my diagnosis. I’m not sure if the Lialda has done much of anything. The prednisone did help the symptoms, however, I hate the side effects. Gastro is considering Humira if my biopsies come back with active UC. I also have a seizure disorder but have been seizure free for the last 8 years due to the implant of a vagal nerve stimulator. 2 weeks ago, I had a bad bread through seizure. Not sure if that wasn’t prednisone related either.
Symptoms:
I am hopeful that I am heading into a time of remission. The past 6 days have been relatively quiet. Prior to that, urgent bowel movements up to 15 times a day, sever abdominal pain, some bleeding and mucous, and fatigue.
About Marge:
I am a volunteer at a big cat sanctuary in Wisconsin. I work with Tigers, Bears, Lions, Wolves and many other animals. I am also a non professional photographer.
Medications & Treatments:
I have added to my medical protocol 1000 units of Turmeric once a day, 1000 units each of vitamin B12 and vitamin D. Have been on low residue diet since December of 2015 and have really done a good job of sticking to it.
written by Marge M
submitted in the colitis venting area
I am a 66 year old woman. Diagnosed with UC in January of 2016 after a month of going in and out of hospital (ER and 8 day inpatient stay) through out the month of December 2015. I have been on Lialda, prednisone and bently since then. Prednisone dose has gone from 40mg a day to 20mg a day.
Hi Marge,
Thank you so much for sharing your story.
I can remember the first time I was prescribed prednisone, my Gastro doctor told me to take over the counter calcium pills to help with some of the adverse effects of prednisone use. Maybe some others have had the same message from their GI’s along the way.
I know this is of course a very tuff dilema that we face as UC’ers, especially since prednisone can often give short term relief from awful colitis symptoms that are hard to get rid of. One of the awful catch-22’s of UC in my opinion.
I added the link within your story to a pubmed article that I thought you and some others might like to read, but also, I just found this one which leads to the abstract of another article that might as well be interesting for others here:
https://www.ncbi.nlm.nih.gov/pubmed/7672685
A controlled study of bone mineral density in patients with inflammatory bowel disease.
Wishing you the best Marge, and thank you for sharing your story:))
((And picture with us:)),
Adam
Hi Marge,
I also seem to have steroid induced osteoporosis. I got myself a compression fracture on my tibia from a simple fall. When the orthopedic surgeon saw my X-rays, he commented to me that it looked like I had spent time up in space. I was on prednisone for 9 months (bummer thing is that it never actually got me in remission).
I am also experiencing major dental problems – my teeth don’t seem to be remineralizing, I now have periodontitis, got a couple of cavities for the first time in twenty years. Last week I broke a tooth and now I have to get a crown.
I’m sort of at a loss as to why we don’t get a bone density test before (or when) we start on prednisone. It seems to me that losing bone density is a deal breaker. We have really difficult and scary choices. I won’t go on it again unless I get in a life threatening situation.
Sorry to be such a downer but you asked. ;-)
Good luck to you.
Marge,
I’m so sorry that you are in so much pain. I am very glad that you’re getting help for the compression fractures.
After using prednisone for five years to alleviate ulcerative colitis symptoms I have 4 compression fractures. Like Heidi I have some dental problems, and while on the prednisone experienced fragile blood vessels, loss of taste, some hair loss, and “redeye”. Those things have subsided. I had 3 Dexa scans for bone density in the past six years. I went from perfect bone density to osteoporosis, and have lost bone on my pelvic area and legs as well as on my vertebrae (compression fractures). My 91-year-old mother has better bone density than I do.
I did use calcium citrate pills with vitamin D for the past six years. While on the SCD diet I dropped all milk products which I now think was a mistake. Also I was not exercising like I had been when I was well.
My U.C.was so severe that I became “Prednisone dependent”. It was the only thing that worked to stop the bleeding and diarrhea. January 11, 2016 after many hospitalizations, trying every medication offered to me, I had a colectomy. It was not what I wanted, but I wanted to live . Since that time when I took calcium pills I found that the pills were not dissolving properly. I have switched to a liquid calcium with vitamin D at a much higher level after meeting with an Endochronologist. I wish that I had met with her when this all began.
She has now recommended that I take some type of biophosphonate, which I will begin in two weeks in order to stop the bone loss. These medications have some scary side effects, but if my bone density continues to decrease at this rate I won’t be able to walk.
I encourage you to try liquid vitamins, calcium etc. because those of us with ulcerative colitis do not absorb things as well in our guts. Please get your vitamins etc. from reputable companies. I also encourage you to get some lab work to see how you’re doing with your hormones, because the decrease in some hormones can also be part of bone loss. I also encourage you to get help through physical therapy to help you maintain your bone density and gain some strength, and myofacial therapy to help relieve some of the pain and decrease any tight or spasmed muscles.
When I first began to experience symptoms of ulcerative colitis, I wish I had listened to my friend who said “throw everything at being well and make that your first priority in your life”. Would it have made a difference? I really don’t know. I just know at this time in my life I am making my health my top priority even over the needs of my family. If I can’t be well I can’t be there for them over the long haul.
I wish you all the best as you heal.