Bone density scans and prednisone use

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blueglass
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Date Joined Dec 2010
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   Posted 3/21/2012 7:40 AM (GMT -6)   
I have an appt next week w/an endocrinologist to discuss a bone density scan I had a bit over a year ago (right after that was when my health got awful, and I am just getting back to it now).

My gi and pcp didn't know how to read the scan because it was inconsistent and I'm pre menopausal -- the hip and femoral neck scores weren't bad, but there were two spine measurements, one in the osteoporosis range (t =-2.7) and one in the osteopenia range (t=-1.9).

I am not sure that this discrepancy is so weird, as I don't have a car and walk a lot, usually even when I'm sick....

I had another scan four years earlier, and the hip and fem neck measures were identical, but that one only had one spine measurement, which was t=-1.4 -- not sure how to compare, but that's clearly gotten worse.

Of course, since that last bone density scan, I've had more pred, and had the 3 months of bed rest, so it's probably even worse now.

I just wondered if anyone has any insight to offer about these readings or what to expect at the appt. It would take a whole lot to convince me to take fosamax etc..... my take is give me a few years w/out drugs and good nutrition and lots of exercise, and then let's see.....but of course, don't want to be stupid either.

Thanks.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5378
   Posted 3/21/2012 8:34 AM (GMT -6)   
I cannot comment on the scores but I will share with you what my brother, and endodondist, says about bone building drugs. He believes we should stay away from them. Apparently they cause destruction of the jaw bone, or teeth. I think if you can increase your bone building exercise, add regular weights to your routine, you might be able to either build back up or stave off further loss. I take a cardio weight class 3X per week, the other 3 days are stair climbing and hiking. My bone density has been great post the 2 years of pred use. I credit the exercise and calcium supplementation.

If it's recommended that you take the RX drugs, talk with your dentist before filling the prescription.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/21/2012 7:29 PM (GMT -6)   
I know what you mean about the fosamax. Hubby took it for about 3 years along with chewable calcium (Vivactin caramel) and the last bone scan showed him now out of the osteopena range. He has stopped the fosamax as he feels 3 years is more than enough and trying to stick with calcium and more exercise. Hopefully the next one will be even better.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

uc_free
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Date Joined May 2007
Total Posts : 645
   Posted 3/21/2012 8:09 PM (GMT -6)   
I don't have anything to offer, but I am in a similar boat. My GI had me go for a bone scan a couple of months ago and it showed me in the oseopenia range in my hips. Everything else looked okay. She is referring me to an endocrinologist at my next visit with her in June. I have no idea what the endocrinologist will tell me. I am only 36, and thankfully (and hopefully) have at least ten more years to get my bones back in order. She is concerned that I am very much at risk due to being so petite and thin.

What bothers me (and scares me) is that I used to be a very competitive road racer before all of this happened, training at least 40 miles a week. Even after diagnosis, and after my highest and longest course of prednisone, I was the overall winner of a local 10K. With all of that training, how I developed this is beyond me. Now I don't do any of it. I try to walk regularly, but with three small children and full-time work, it is next to impossible.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Christine1946
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Date Joined Aug 2008
Total Posts : 5449
   Posted 3/21/2012 10:11 PM (GMT -6)   
     I have something to contribute to this topic.  I went through an early menopause (periods were over by the time I was 45).  My family doctor recommended a bone scan when I was in my early 50's and I was diagnosed with osteopenia.  This was prior to my developing UP.  I tried Fosamax and it gave me terrible indigestion, so I just quit taking it after only about three months.  When I was diagnosed with UP, at age 52 in 1998, my GI doctor never mentioned taking calcium when on prednisone.  I knew nothing about prednisone back then or the harm it can do.  I only took calcium sporadically.   My GI doctor finally told me to be sure to take calcium daily in 2000, during my second flare.   In 2004, I took a terrible fall right on my tush and suffered a compressed fracture of my lumbar spine.  That is when they told me I had full blown osteoporosis.  My bone scan read -3.7 in the spine shortly after my operation.  A few years before it was -3.5.  My hips were -1.5.
     I am not due for another bone scan until late this year.  I take calcium daily but will not take any med for osteoporosis.  My friend wound up in the hospital after a Boniva injection and almost died.  I take 2 chewable Caltrate's daily.  I have a lot of problems with my teeth.   I know a woman who works for a dentist and he will not pull a tooth or do invasive procedures if the patient is on any med for osteoporosis until that person is off the drug for three months.  That sends a warning signal to me.  My colorectal surgeon thinks my bones will improve by taking the calcium and doing some weight training, which I should do more often. 

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 255
   Posted 3/21/2012 11:17 PM (GMT -6)   
All I can say is do everything to increase your bone health while on prednisone. However, I completely understand not wanting to do the osteo drugs.

I was on prednisone for over a year, with the highest at 40 mg. I always was trying to taper, but I wasn't able to fully get off it until about a month ago now.

I was on 750 mg Calcium w/ Vitamin D for the entire time on Prednisone. For the last two or three months I was on pred, we increased the Calcium to 1500 mg.

Now, this was all at the end of January. So a month prior to getting off the pred, I was on about 7.5 mg of pred or so, I woke up with flank pain on my left side. Over the next few days it moved to my right side as well. One day I woke up and was not able to breath. We went straight to the ER. I was there for four days because no one could figure out what was wrong.

Well, they finally figured out that due to prednisone my ribs had broken. Now I'm 22 years old and this is rather scary. It took sleeping to break my ribs...so really, any of my bones can break at anytime. Now I also had a bone density scan about 6 months prior to this and everything was fine. It took 6 months for my bones to deteriorate that badly. Jeeez.

Even worse, by teeth are starting to break and fall out. Around the time I got off the pred, one of my teeth cracked. Two weeks after that, another cracked. I went to the dentist two days ago, had an x-ray and what ya know, another had cracked without me knowing it. As soon as I said the word, prednisone, he said get off it ASAP, it wreaks havoc to your bones. Thank you, as if I wasn't well aware of that.

Sorry that I can't help you with the scan numbers, but just wanted to share my story of issues with pred and bones. I highly recommend to everyone on pred to do something to increase bone health!

Good luck with everything!
Sarah, 22 y/o.
Ileostomy
Several Bone fractures due to Prednisone
Thyroid Cancer, Severe Crohn's Disease- perianal, many more...

Current rx: Celexa, Lomotil, Pentasa, Humira, Klonopin, Prednisone, Synthroid, Zinc, Multivitamin, Calcium w/ Vitamin D, Fentanyl, Ambien, Depo Provera, Align, Zofran, Lansoprazole, Propranolol, Dilaudid

Past rx: Remicade, 6MP, Flagyl, Cipro, Entocort....

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 346
   Posted 3/22/2012 12:41 PM (GMT -6)   
Riddle me this:

You have been through the grinder haven't you?! Sorry to hear about the teeth! I asked one of my dentists if I should worry about prednisone "breaking" my teeth and he said "..prednisone doesn't work like that.." LOL!

blueglass:

I can't help you with the scan numbers either..my last DEXA they said I had osteoporosis..that was almost two years ago....my next scan is scheduled for May 2012...

The best advice I've been given is to do weight bearing exercise (as has been said by others on this post). It doesn't have to be a "Arnold" workout either...twice a week exercise all muscle groups with weights...can start with low weights and low reps/sets....I'm starting in two weeks as I didn't feel my body was ready for that kind of workout...as my 1 year anniversary is approaching, I figured that was a reason to celebrate - start working out!

Hope your tests go well blueglass....your continued story and overcoming challenges has been an inspiration to me (a long with most of the other folks on here...summerstorm, suebear, nascarron, villager, 80'schick, esoR, blueheron, and on and on...and with all the folks that just had surgery - can't remember all the names!)

God Bless you with another recovery!

jimmy

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 3/22/2012 2:06 PM (GMT -6)   
Jimmy, thanks that's sweet. Good luck w/the weight program. I started lifting weights a month or so ago, but then I (separately) hurt my back and put that on hold. My back is better now, but I'm focusing on getting used to swimming, then I'll add weights in the mix. I walk a lot, always have, so that is supposed to help too.

Sarah, yikes, I'm so sorry. Do you have osteoporosis in your family? That's very scary, and atypical -- I was on pred a lot longer than you, and had nothing like that. I hope the doctors can help you. I'd ask for PT in the mix -- as it seems critical that you get an exercise plan that can help you build your bones w/out hurting you. Please keep us posted. It's awful that this is happening to you so young, but at least you have that it should be many years before your estrogen drops working in your favor....

Christine, the incompetence of your gi doc just astounds me. He's the one that was totally against surgery, right? Yet he gave you prednisone when you already had such low bone density????? Sounds like something creeping into the malpractice zone to me. My gi did tell me to take calcium, and he was always clear that pred was dangerous. It's a long story..... I did once call pred, "the devil that I know," and his response was, "It's still the devil."

UC free, also yikes. I hope the endocrinologist has something hopeful to say, keep us posted (as I will after my appt next week).

UC wife and Suebear -- thanks, nice to have some hopefulness in the mix!

Thanks everyone.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 3/30/2012 12:33 PM (GMT -6)   
I saw the endocrinologist today, though I'd post a report -- some info that might be useful to others.

Good news! She's not recommending that I take any drugs (so no tension there, as I was probably going to to decline ....). She took a really thorough history, and then examined me in various ways (touch the floor, reflex hammer, look for fat deposits that pred can leave, move arms and legs in various ways). Basically, my hip readings are normal. My lateral spine (lying on my side -- they didn't do that the first time I had a scan) is the one that tested osteoporosis, but she said that one is really volatile, and it was likely so high because I was very sick and very skinny when I had it -- it actually changes w/weight. My other spine measurement is the one that's in the osteopenia range. She said nonetheless, my fracture risk is very low.

The spine is the first to get worse measurement wise and also the first to get better. If the problem stays only in my spine, there's a more mild drug that i could go on. During my scan they checked and I had no compression fractures (that's why older people can get stooped over -- lots of little spinal fractures)

Advice was mostly what you'd expect -- get 1200 mg calcium a day from food and supplement (I've been taking the liquid calcium citrate, and she said that's the best if you might have an absorption issue), walk every day, eat healthy, do weight bearing exercise, get lots of Vit D (I need to get another test for that soon, as mine was low last time.... she said it should be well into the 30's).

Some general things about prednisone: she said the damage is done from it. It's not hurting me anymore as long as I'm not taking it, but it will be hard to catch up. The biggest amount of bone loss comes two years before periods cease to five years after, and since mine are still regular, it's very likely that that hasn't started for me yet. She says it will be hard to catch up, and it's pretty clear that she expects to be recommending drugs after menopause. But it is good that I'm not there yet (keeping that in mind, because for one or two days each month, my periods are just awful now.... trying to remember it's good for my bones).

Besides the pred, having gut issues for so long meant that I wasn't absorbing nutrients as well, and that affects bones too, and I think she said that some of my other drugs could have interfered too.

One funny thing: I told her all about my surgery, and then two minutes later she asked me how many bowel movements I had a day..... I said none, I have a bag, and she laughed.... I know this comes up here in lots of contexts, but it's such a funny thing how people hear information but it just doesn't sink in.

Editorial -- sometimes here I feel bad for people who had surgery after only having one or two flares.... but at the moment, I'm thinking it's an excellent thing..... get the offending organs out and don't mess up other parts of your body with not only pred and other drugs but also with being sick for so long that you don't get properly nourished.

In any case, isn't it nice to go to the doc and find out things are better than you thought?
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.
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