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 prescript
ion. 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.
UC (Pancolitis) diagnosed in 1992.
Medications: Dipentum, Salofalk Enemas,
prednisone (Stopped 2008), entocort enemas (Stopped 2008), Cortenema (Stopped), Asacol (Stopped 2003)
Other therapies: Spinach & Sunflower Seeds, gluten free, dairy free (except for aged cheese and SCD yogurt), rice free,
HPI (2008), SCD (Stopped, but still make yogurt), Vitamine E enema Osteoporosis diagnosed in 2008.
Medications: None yet, but they want me to take fosamax
GERD diagnosed 2008, but had it forever.
Posted 6/26/2010 12:08 AM (GMT -6)
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.
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.
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.
Male, Otherwise healthy, Non-Smoker and a teetotaler.
Flared for about a year before colonoscopy and official diagnosis of of IBD on 23rd March 2007, at the age of 30 years.
Currently taking -
Colazid 2250mg 3X a day,
Azathioprine 100mg 2X a day,
Salazopyrine Suppository 500mg, one every night (Stopped since 2nd June 2010)
Mesalamine 1gm enema 2X a day (since 2nd June 2010)
Otherwise serious migraine headache. Possible culprit for migraine is Azathioprine. Migraine is affecting quality of life way more than IBD.
I just give suggestions. You decide what to do with it
Posted 6/26/2010 10:00 AM (GMT -6)
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 2:36 PM (GMT -6)
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.
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days. Prednisone, Asacol, Rowasa enemas. Two year remission. Flare..switched from Asacol to Colazal. Two year remission. Started 6MP in 2002. Flared yearly from 2003 to May of 08. Hospitalized for ten days in May of 08. Flaring more often since. Off 6MP. Remicade failed. Humira failed. Meds: 20 mgm prednisone, Colazal, Benicar, zolpidem for sleep, Calcium with D, Multivitamin. Surgery scheduled for June 28th.
Posted 6/26/2010 6:28 PM (GMT -6)
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 6/26/2010 11:53 PM (GMT -6)
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.
Medications: Dipentum, Remicade 1 (1st infusion 2010/06/25), prednisone (15mg/day), Salafalk (Rowasa) Enema
Other: Spinach & Sunflower Seeds, gluten free, dairy free (except for aged cheese and SCD yogurt), rice free, HPI (unsuccessful)
Osteoporosis (2008): Medications: None
GERD (2008, but had it forever) Medicaitons: Parriet (Stopped)
Posted 6/27/2010 9:12 AM (GMT -6)
Good luck with your surgery on Monday and let us know how you are doing.
Currently it is Wednesday, March 20, 2019 9:59 AM (GMT -6)
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