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I found out today I have bone loss.  I had a DEXA scan to determine my bone density, and to my surprise, the sweet nurse shared with me that I do, in fact, already have bone loss.  Im 33 years old, and Im halfway between normal and osteoporosis.  Ive been taking 6MP and Prednisone for over a year, and Humira for 10 months.  Great... now I have something else to worry about.

Anyone out there have this issue?

 Reply posted for wiggles.

You need to research your Chrohn's disease biggg time!  Don't just listen to your doctors every word, they themselves don't know everything about your disease but you need to do your own research on it if you want to know whats going on with your disease and body.  I was on predizone for 3 1/2 years 400mg 4 x a day.  Plus Tylenol 3 and other medz.  My gastro doctors and Sergent keeped telling me I would die.  I was 24 when they properally diagnosed me and I'm 28. During those four years I was hospitalized five times untill my sergent slowley took me off my meds.  I'm still in pain but do not feel like I used to and I'm allergic to Wheat Gluten which is in most foods, breads, cereals, ect.....  When you get Crohn's disease it deteriates yours bones, most organ's and any kind of steroyed does that!!! Research your disease and you will be much better off!  Good Luck

                                                                   Jude

 Reply posted for wiggles.

I am 34 years old and was just told the other day I am starting to get bone loss due to prednisone too.   I am still on it at only 5mg because I go into Adrenal Insufficiency everytime I try to get off.  They want to try and keep me on a low dose and taper slower and see if my body will start to produce the cortisteriods on its own.   I was disappointed and am glad the there are so many out there to share this with and find different medications to help it.   The key is that we are on top if it and have a chance to improve the bone density now that we know. 

I take Alendronate Sodium (Fosamax) once a week.  I also am looking into going to the gym for some strength training with weights. 

Good luck

 Reply posted for wiggles.

So, wiggles, have you been taking prednisone for over a year and still on it? What dose have you been on?

I took 40 mg and tapered down for about 3 months until I was done with it last year. About 4 or 5 months later, I went back on prednisone. I went back and forth between 40 mg and 60 mg for about 4 months before I started tapering, and it took another 5 months to be off of it. My doctor doesn't think I was on it long enough to worry about osteoporosis, but I have been feeling joint pain and weakness that I had never really felt before all the medication I was on.

If anyone has been through a similar regimen (dosage and duration) of prednisone, did you end up with any bone problems?

 Reply posted for wiggles.

Hi:

I experienced the same situation due to years of on/off prednisone use. I went on Actonel with calcium and the osteopenia corrected itself in the first year. My gynocologist was amazed at the turnaround. I continue to take Actonel with calcium.

Linette

 Reply posted for marilynaz.

Marilyn,

Thanks so much.  I'm seeing my GI doc on Wednesday, and I plan to ask about Asacol, Flagyl, Fosamax and Boniva.

I started with the three times a daily Calcium + D supplement on Friday after the news from the scan and started walking today.  I hope and pray I can turn this around, as I'm only 33 years old and I know bone loss will only get worse with age and menopause.

Thanks again for your help!

 Reply posted for Jaturi.

These are great ideas!  I'm actually seeing my GI doc on Wednesday to discuss the results of the DEXA scan.  I also had an MRI about two weeks ago, and he told me over the phone I have inflammation and active Crohn's in my terminal ileum.  So... based on your advice, I wrote down the names of the meds and plan to request a blood test to rule out malabsorption.  I started with a Calcium + D supplement three times a day on Friday after hearing the results of the scan, and I started walking tonight.  I researched a bit about bone health, and although I already knew weight bearing exercise is a must, I had no idea that the exercise is site specific - meaning you only build strong bones with the muscles you use.  Apparently, bone health experts recommend a daily weight bearing exercise program, but they suggest rotating the type of exercise in order to help strengthen all your bones.

I had no idea I'd end up being a professional research scientist and part time doctor!

Thanks for your help - I greatly appreciate it!

 Reply posted for wiggles.

I just joined to find info on osteoporosis and found these postings, interesting.

I'm 55, WM. I have terminal ileum Crohn's and strictures proximal to the Crohn's area. I've been on and off Pred over the years but off for over five years now with symptoms bearable to mostly controlled with Asacol and sometimes Flagyl.

My GI suggested I have a bone density scan last year which showed osteopenia. This year it is osteoporosis. After ruling out my psych meds I had a Vit d 25 OH level drawn which showed insufficient absorption in spite of taking 4 Citracal per day. Now I have started Fosamax per my GI's advice as well as the Citracal. I've also increased my walking.

The point is that the terminal ileum is the site in the gut where Vit d is absorbed or, in my case, not well absorbed. I would recommend to anyone with terminal ileum Crohn's that they get a Vit d 25 OH  and a Calcium blood levels drawn to rule out Vit d malabsorption as one of the underlying reasons for their osteopenia/porosis.

Here's hoping the Fosamax does the trick, so far no side effects....  

 Reply posted for wiggles.

Have they put you on Actonel or any of the other osteo. drugs? Talk to your primary about that. Before Prednisone, I decreased my bone loss and went from osteoporosis to osteopenia. Also, I suggest that you hit the web and read up on osteo. Weight bearing exercise { walking} is good.

Marilyn

 Reply posted for marilynaz.

Thanks so much for your response.  I too drink OJ with calcium.  I also use butter with calcium, drink lots of milk, and eat yogurt, cheese, ice cream, and other dairy products.  Apparently, after being on Prednisone for 14 months, it wasn't enough.  So, now I'm taking a suppliment with vitamin D three times a day.  The best I can hope for, from all the research out there, is to maintain my current bone density.  I'm trying my best to get off the Prednisone, but I seem to be Prednisone dependent.

Thanks again!

 Reply posted for wiggles.

i have been on actonel for about 4 years for osteopenia. i just started on prednisone and my primary told me just last month to make sure that i keep up with my actonel and calcium supplements as prednisone is *** the bones. i also try to get calcium added to orange juice and any other products that i use that have that option. besides my actonel once a week, i take 3 calcium citrate supplements daily. good luck, marilyn