UC and osteoporosis

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/31/2008 8:21 AM (GMT -6)   
     My GI doctor requested I have a dexascan done, so I did.  I knew I had osteoporosis and so did he but since I haven't had this test done since 2005, he wanted to see if the condition had worsened.  Well, it went from -3.5 to -3.6, which I don't think was too bad considering it was almost four years and only went down 1/10th of a point.  I take calcium with vitamin D every day and double the dose when on prednisone.  He wants me to take Fosamax (which I tried several years ago and it gave me heartburn, so I stopped it) or Actonel (think that is the spelling).  He also mentioned Boniva or some kind of injection.  I don't like the side effects these can cause.  I already take Colazal, 6MP (which has lowered my white count to 2.6) and occasional Cort enemas for my UP and Benicar and Toprol xl for high blood pressure.  All this crap and probiotics, calcium, multivitamin and fish oil..oy.
     What are your opinions?  Also, anyone else on meds for osteoporosis in here?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 1/5/2009 10:09 PM (GMT -6)   
I got osteoporosis at age 31 due to prednisone. T score of -2.5 spine and -2.6 left femoral bone and hip (osteoporosis T<-2.5, osteopenia -2.5<T<-1.0, normal -0.9<T<0.9) that they measured (meaning I lost around 33% of my bone density). I've been on Actonel for over a year, don't really know how it is doing, but I don't have any side effects from it. I only take 2 pills once a month, very tolerable and I think the heartburn thing would be rare with it compared to the other weekly or daily pills of that stuff I've read about. I've been off the prednisone for a year.

I've even researched NASA's website on the matter. Here's a secret that they tend to keep to themselves. We'll never be able to live or travel in space long term because all of the astronauts lose on average 11% of their bone density on their 2 to 3 week missions in space due to the lack of gravity. We need to live somewhere where the gravity is equal or more than what it is on earth to maintain bone density. They get their bone mass back in a few weeks after returning to earth, but they never regain their lost bone density. That's why you don't see the same people going up all the time in the space shuttle and they don't stay very long in space. The people in the space station that live there for several months are all inducing osteoporosis in their bones so they will never make more than one trip to the space station in their lives.

All of these drugs (Actonel, etc.) just build a layer of denser bone on the outside of your existing bone, sort of like the candy coating on an M&M. It's impossible to reduce the pore space in your exiting bones once it is gone...so their way to "build up" your bones with medication is to have new denser bone develop faster on the outside of your existing bones by slowing down your body's bone absorption rate.

When taking prednisone and the other UC medicines, the calcium in your bones is leaching out of your body so fast that it's almost useless to only take calcium and vitamin D supplements. Only by taking Actonel or something like that will maintain your bone density or slow the degradation rate while on prednisone. Once you get off the prednisone, would it be worth it to take the calcium and vitamin D supplements along with Actonel. Also people recommend weight bearing exercise as well to help build the stronger outer bone. Too bad websites don't spell this out as clearly.

UPDATE 1-17-2015: Over the past 8 years I've been on Actonel, Boniva and was switched to the generic version ibandronate (150 mg) once a month. My latest bone density T scores came in at -0.9 spine (92% of normal-now considered normal) and -1.9 for left femoral bone and hip (77% and 76% of normal-osteopenia). So reversing osteoporosis and returning your bone density to normal is possible after stopping the steroids (haven't taken any since my first surgery in 2008). I'm now 38 years old and had a unexpected surgery in October 2014 due to scar tissue adhering to my small intestines from the 3 surgeries I had in 2008. Other than that I feel 100% and have no regrets with getting the J-pouch. I also have pouchitis that flares up every 6 weeks but take a antibiotic pill (tinidazole) for one or two days and it goes away for another 6 weeks, then repeat. I may be surgery free for the rest of my life or the scar tissue can form again...just something I have to deal with. My goal now is to keep improving my bone density...I didn't do much weight bearing exercise either over the past 8 years, which I think I'll start doing, also my Vitamin D levels were very low, so working on that as well, otherwise feel normal and healthy.

Post Edited (GISGuy31) : 1/17/2015 9:50:24 PM (GMT-7)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/5/2009 10:28 PM (GMT -6)   
Well, as you know, if there's a weird uncommon side effect, I get it. I do have osteoporosis, but also developed osteonecrosis in my lower jaw, likely related to Fosamax. This is a fairly newly reported side effect of this class of drug. I decided to stop the Fosamax because of this; remember that it's an uncommon side effect, though, so probably wouldn't affect you.

If you do decide to take it, I'd opt for one of the monthly ones. Taking Fosamax every week was a drag for me.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/6/2009 9:21 AM (GMT -6)   
If a patient needs to take prednisone it should be given with an Rx of weight bearing exercise. I am so grateful my GI told me that I could counter the effects of bone loss with plenty of WBE. I was on varying doses of prednisone for over 2 years but did not suffer bone loss and he credits that to my exercise routine. I don't think doctors stress this enough and encourage their patients to work out.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/6/2009 10:07 AM (GMT -6)   
Another vote for exercise. I was diagnosed with osteopenia due to pred. I started a heavy weight training program along with light to moderate cardio and have reversed my bone loss without medications.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 

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