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Now I've got Osteoporosis

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Posted 6/25/2010 2:07 PM (GMT -5)
In doing the various tests required before starting remicade (If my insurance approves), my GP knowing I've been on prednisone on and off for the past year an a half ordered a bone density test and immediately gave me a prescription for fosamax either way (because I have other risk factors) but told me to check with my GI first to see if it can cause more colitis problems for me.

My GI said not to start the fosamax until the tests come back because he's seen a huge increase in acid reflux and diarrhea with it, and that's the last thing I need now. Turns out the test came back and I do have osteoporosis at 56 even though I exercise, and on the estrogen patch. Does anyone here take have osteoporosis and what do you take to deal with it? Did any of these drugs cause problems for you? My GP said you can also get infusions. I'm wary about this whole thing though, because even though my GP said is was disproved, I've always read that these medications like boniva, fosamax, etc. make the bones harder but in fact more brittle.

Any advice appreciated!
Posted 6/25/2010 2:19 PM (GMT -5)
No but definitely start taking some calcium and vitamin D!
Posted 6/25/2010 8:26 PM (GMT -5)
Sorry, should have mentioned I'm already taking calcium/Magnesium/D, but really don't think that's going to probably be enough.
Posted 6/25/2010 10:10 PM (GMT -5)
I have osteoporosis too. I was diagnosed with it in 2008. We have a similar story, but I am 36 and male. My GP also prescribed Fosomax a little with a little hesitation. I didn't fill the prescription. I told my GI about the osteoporosis. I was concerned about taking Fosomax for so many years. I also to him I wanted to see a specialist. He recommended one, but I had to go back to my GP to get the referral. This was the best decision ever. The specialist is an Endocrinologist. He is great. He immediately did a bone scan at his facility and I have since had another a year later. He also gave me 50,000iu of vit D that I take once a month and also told me to take 1500mg of calcium a day. Most importantly he did not prescribe Fosomax! He said since I am 36 I don't have a risk of breaking bones even though I have osteoporosis. My second visit to the Endocrinologist I had a second bone scan and I am up 3.5% in bone density so he again said that I don't need Fosomax yet. The other thing he mentioned that getting tested every year by the same machine, at the same facility with the same procedures is important to ensure you are getting similar readings. Finally, I asked him about a supplement called strontium. There are lots of reports about strontium increasing bone density, but it doesn't necessarily make bones stronger. He strongly advised that I don't take it because it is a heavier element than calcium and will only confuse the bone scan results.

By the way, getting setup for Remicade is wise. You can not take pred or any other steroids anymore as I am sure you know. I had never been much of a pred user, but I used entocort enemas for years. Entocort is not supposed to be systemic, but obviously it was in my case. In any event I was in denial about all of it and just last week my never ending flare got incredibly bad. I was begging for Remicade in the GI office yesterday and just had my first infusion today! I was in such bad shaped that, under recommendations from my GI, I took 15mg of pred last night. It is all very devastating.
Posted 6/26/2010 1:08 AM (GMT -5)
To be very honest with you folks, I am quite scared now.

The OP doesn't mention his/her age and gender (and sorry, I have no suggestion / advice for you) but robray, you are just 36 (and I am 33) but you have UC for ages compared to me. Thanks for posting this message for making us aware what to expect. I did see an issue with pred but I never thought a male could also get osteoporotic so quickly. I am sorry for your current situation.

Few questions,
1. You take 50K units of Vit D, is it as a sort of depot preparation? (as you take it once a month)
2. You take 1500mg of Calcium a day. What form do you use? If you take tablet, what salt of calcium is it? Is it carbonate i.e. Calcium carbonate?
3. before Osteoporosis, did you face any dental issues? In my case, last year, I had difficulties eating any hot or cold, like hot soup or ice cream. I used to get a severe pain in my teeth as if I have lost all my enamel. My wife got suspicious of Vit.D deficiency or calcium loss, so I stated the supplement and in a month, I was fine. Just curious, if that was a signal that I should be prepared for Osteoporosis. I have had at least 5 courses of Pred so far, along with Pred enema on and off.

@ gdfairy,
Apologies for my questions, I don't plan to hijack your thread. I Hope those folks who have been through this will have some answer for you. Good luck.
Posted 6/26/2010 11:00 AM (GMT -5)
My GI dr put me on fosomax because he was worried about bone loss due to years of prednisone use. I have avascular necrosis from using prednisone so much. My family dr and ortho dr immediately took me off the fosomax. said it could cause problems with the esophogus. I am now on actonel. I take it once monthly. It is a fairly new med so who knows what side effects it may have later on. I also take 600mg of calcium plus vit D daily. Take a multi vitamin also. I did have dental problems also. Again from using prednisone. I had my jawbone replaced a couple of years ago. No more prednisone for me. The hip problems I have are very painful but I do understand that at the time I used the prednisone it did help with the flareups from the colitis. After taking it for so long though it's effectivness wares off along with the bone loss because of it. I will eventually have to have hip replacement but the ortho drs are worried about doing it because of my colitis.
Posted 6/26/2010 3:36 PM (GMT -5)
     I was diagnosed with osteoporosis a few years ago, my bone scan read -3.5.  I refused Fosamax because I don't need ulcerations in my esophagus and by the way, I heard Actonel could do the same thing.  My friend works for a dentist and he will not treat people on these meds.  Then my family doctor suggested I get Boniva injections!  I have to deal with having major surgery to remove my rectum and colon this Monday.  After I fully recuperate from that operation and get used to the "bag", I will consider something for the osteoporosis.  I had a nasty fall back in 04 and suffered a compressed fracture of the lumbar spine but it doesn't bother me.  I walk a lot, have no signs of osteoporosis in my hips, so far.  All I take is Calcium with D.  Been on prednisone a lot.
Posted 6/26/2010 7:28 PM (GMT -5)
As the OP, I'm female.  I did mention I was 56 and on estrogen (had a hysterectomey and I thought the estrogen was protecting my bones).  I'm taking about 1000mg Calcium, 500mg Magnesium and 600 D a day and I think I should probably get some boron or Vit. K too.   I exercise faithfully, so even though I was on prednisone, I thought this combination was counteracting the possible bone loss.   I was wrong. 

Funny you should mention about the teeth, lately, my teeth are REALLY sensitive to hot and cold.   I'm supposed to get a cap replaced-- I hope I'm not going to have a problem.

I've been on about 5 courses of prednisone over the course of my 6 year run with this disease (started when I stopped smoking).  Moreso on the the prednisone lately since I think I'm becoming dependent--plus the cortisone enemas every now and again.  I'm supposed to start remicade Monday, so hopefully it will go well and I can wean off the prednisone for good.   I'm also thinking I should lay low on the coffee and colas, as they are supposed to leech calcium from the bones.  Some say green teas strengthens your bones, but it's just not the same as coffee to me.  I'm just wondering if it's any better to get the shots or infusions for the osteoporosis.  I know you are not supposed to even stay on these meds long term.

Posted 6/27/2010 12:53 AM (GMT -5)
My last bone scan (I think z score) is -3.2.

I take Calcium Citrate from Costco. I heard citrate is easier to absorb, but I don't have any real data to back that. The amount I take is based on the elemental calcium amount supplied by each pill. I take 5 per day and each pill has 315mg of elemental calcium. The Endocrinologist says I need to take 1000-1500mg of elemental calcium per day. I know I am over doing it a little, but not by much. He said I could take 1000-2000iu of vitamin D daily. Then he offered my the 50,000iu/month pill and assured me it was the same as the daily pill. I gladly took it. He even supplied it. So far the Endo is the best specialist I have ever seen.

I have never had any dental issues other than receding gums and a cavity when I was young.

I have also never broken a bone either, but I am very nervous that I will not be able to say that forever.
Posted 6/27/2010 10:12 AM (GMT -5)
Christine,
Good luck with your surgery on Monday and let us know how you are doing.
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