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Recent dexa scan results

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Posted 8/1/2016 10:28 PM (GMT 0)
I had a dexa scan done a couple of days ago and got my result today. My bone density has decreased more. I haven't been on steroids since the last scan in 2013/2014 and I've taken Boniva, calcium, vitamin D and K. I'm so disappointed and discouraged. Just needed to vent.
Posted 8/1/2016 11:37 PM (GMT 0)
That stinks, as it sounds like you're already throwing all of the usual recommendations to combat bone loss. How bad is your score compared to your peers? Do you have osteoporosis or osteopenia?
Posted 8/2/2016 1:47 AM (GMT 0)
That's a good question. Last time they couldn't give me an answer because there weren't any peers at my age. I'll ask them again.
Posted 8/2/2016 2:01 AM (GMT 0)
Check out your non-UC Rx meds to be sure they aren't contributors to bone loss, especially if you take them longterm. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 8/3/2016 1:11 AM (GMT 0)
I don't usually post over here but do read a little. I'm mostly on the ostomy forum. I have a dexa scan coming up this month and I'm really nervous. Before they said I had ostopenia. My GI is pretty sure I have osteoporosis. I haven't been on steroids in awhile but I have been underweight and malnourished which they think contributed to furtr damage.

The calcium supplement I started last year and I hope makes the differnece is Ethical Nutrient Bone Builder. The calcium is from MCHC which has been proven to work quite well. It isn't very expensive might be worth looking into.
Posted 8/3/2016 1:15 AM (GMT 0)
Cupcake, I hope your results get better. Would you mind keeping me updated? If you want you can email me. It's in my profile :-)

I use ordered some Algaecal. I know bacon girl has been on it and a mutual friend of ours also and they swear by it. Thing is it's sooo expensive. But I want to get better.
Posted 8/3/2016 2:06 AM (GMT 0)
one word = weight bearing exercise !
Posted 8/3/2016 6:56 PM (GMT 0)
I had osteopenia in 2008 and then my bone density went back to normal in 2010. When I got my DEXA results a few months ago, I was really surprised to see that I was back to having osteopenia--I do a lot more exercise now than I did in the past, had been in remission for a few years, had never taken oral steroids, and regularly take vitamin D and calcium. My GI has referred me to an endocrinologist, whom I see in a few weeks. My (non-evidence-based) theory is that my gut is not absorbing nutrients; even though the UC has been in remission, I still deal with a lot of gut issues (IBS, food sensitivities, and true food allergies).
Posted 8/3/2016 9:22 PM (GMT 0)
Andrina, I sure will let you know. I spent about half of the last year very sick and half of the year very healthy and exercising a lot. Only consistent factor was taking bone builder the whole time, although when I was sick good chance I wasn't absorbing it.

I am not familiar with Algecal but might look that up. I was trying to find the link about mchc but my bookmarks are a mess!
Posted 8/3/2016 9:42 PM (GMT 0)
Found it. The key for anyone considering a new calcium supplement is you have to make sure of the source and low heat processing. I only found 2 brands that came from free range cattle, no pesticides ect and low heat processing.

http://www.meta-ehealth.com/site/office/custom-wellness/article.jsp?path=fm_wellness_center/supplement_reference/&id=36&category=null
Posted 8/23/2016 12:27 AM (GMT 0)
Andrina I got my results and my doctor was wrong thank goodness! I do not have osteoporosis yet, not even close.

My z score for hip was -1.1 so barely ostopenia -1 is normal. My lumbar/spine was -1.7.

I was osteopenic everal years ago but barely. Can't find my scores but think they were very close to -1. Just a smidge low. So for the amount of prednisone I have been on since then and as sick and underweigt as I was i feel very lucky. From my memory I don't think things have changed or worsened.

I have been doing a lot of weight bearing exercise and taking the bone builder. I am going to continue both and looking into osteogenic loading exercises. I have an appointment at a clinic that has the osteogenic loading machine.
Posted 8/23/2016 1:50 AM (GMT 0)
I'm dealing with it right now, was diagnosed 2 weeks ago with Osteonecrosis of my right hip. I have an appointment with a surgeon on Sept 9th. I might need a new hip and I'm only in my 30's....thanks Steorids.
Posted 8/23/2016 1:15 PM (GMT 0)
www.emedicinehealth.com/osteoporosis_and_calcium/page6_em.htm

Examine what you are eating and drinking or smoking, the wrong things can diminish calcium intake.
Also taking Vitamin D and/or getting in the sun helps calcium absorption. (link has follow-on to this)
But I also remember reading somewhere that too much calcium can harm the heart. Have to go looking for that one for more info.
Posted 8/23/2016 3:46 PM (GMT 0)
Imgardner that is a very good link!! That has a lot of info in one place that I did after a lot of research.

I do think part of the reason my scans were better than my doctor expected with my history is because I did all that research and did much more than my doctor said. My GI was proactive about the calcium, vitamin D, and types of exercise but a lot of them do miss advising on all the risk factors that will harm the bone.

I think a big one doctors miss is the acid reflux meds, which now warn use over one year can cause osteoporosis.
Posted 8/24/2016 10:17 PM (GMT 0)
I've been in and out and back in to osteopenia. I think weight bearing exercise definitely helped me. Deterioration has gone along with me being too tired to exercise.

Also be sure to have your calcium supps and/or containing food clear of iron supps/containing food. They fight with each other for absorption. Always makes me wonder if the early architects of kosher eating had worked this out somehow.
Posted 8/25/2016 11:11 AM (GMT 0)
I had a doc who was pushing on the osteopenia diagnosis, and I did some reading. The jury's out on whether it should be treated at all. I wouldn't stress about it.

http://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-the-prescription

http://well.blogs.nytimes.com/2009/09/07/the-confusing-diagnosis-of-osteopenia/?_r=0
Posted 8/25/2016 2:21 PM (GMT 0)
My docs didn't give me any numbers so it's difficult for me to compare. They only told me over the phone that my density decreased. They also said they cannot tell me if I'm having osteopenia because I'm too young and they don't have data for comparison. They want to do another scan next year and I hope it will look better by then.

Cupcake, I'm glad your results are good. Hopefully it stays that way.

It is my understanding that you have to keep taking supplements and doing exercise. The moment you stop you drop again. Is that true?
Posted 8/25/2016 7:13 PM (GMT 0)
Seconder - I definitely would not take any of the drugs for just osteopenia as the drugs rarely improve your scans all they do in some cases is help prevent a fracture. With osteopenia you are not yet at risk of fracture just above average risk for developing osteoporosis. My bf is a dentist and he has a very strong opinion on those drugs and what he sees orally. So he was against me taking the drugs even if I had osteoporosis.

However I think it needs to be addressed with lifestyle, exercise and calcium. Especially if you are young. I'm still in my 30s so I don't want to go into my 50s and menopause already osteopenic.

Andrina as far as exercise I know it is true that you need to consistently be doing the exercise as you are constantly breaking down and building new bone. So if you aren't exercising you don't get the benefit of past exercise continually. I don't know for sure about supplements but I lean towards yes on that as well.

I've done a lot of research and it is interesting that all exercise is definitely not created equal when it comes to bone density. For example power walking is better than running because of the heal strike, especially if your hip scan was low. The cushion and heel height of a shoe also affects impact which can lesson the stimulation for bone growth. When I made my appointment for the osteogenic loading exercise consultation they even said to wear flat shoes. That the flatter the better and definitely nothing with a heal thicker than an inch.
Posted 8/25/2016 7:18 PM (GMT 0)
Andrina that really stinks that they can't give you numbers. Are you under 30? I think under 30 can be harder to give an accurate number to reference but over 30 they should always be able to because the T score is based on the average 30 yr old I think.

I do know my first scan I had years ago when I was only 22 that they didn't give me a number then. Any scan I have had since 30 I have been provided the T and Z score.
Posted 8/26/2016 2:17 PM (GMT 0)
I was 28 then now I'm 31. Still no numbers.
Posted 8/26/2016 10:47 PM (GMT 0)
I met with some doctors a few months ago as part of a clinical study at NIH re calcium deficiency and bone disorders. I have osteopenia (for many years now). Osteopenia does not always turn into osteoperosis. One of my takeaways was doctors' view was that drugs are often over-prescribed for osteoporosis with little effect and bad side effects. Treatment should be dictated based on an individual's fracture risk (FRAX) which can be measured.

Bone specialty seems to be a new area -- try to find an endocrinologist specializing in mineral disorders that affect bones. It may be that there is little you can do, but it also may be that you will be "osteopenic" for years and it won't affect your life.
Posted 8/27/2016 7:51 PM (GMT 0)
Cupcake, what exactly does your dentist boyfriend see orally about the bone drugs? I was on Boniva for some time and I was afraid of jaw necrosis. Does this actually happen?
Posted 8/28/2016 12:46 PM (GMT 0)
The jaw necrosis does actually happen although I think the percentage of cases is still fairly small. He does check patients for jaw issues but it is not his main concern.

His main concern is that the drugs inhibit the bones natural bone building process so people on those drugs don't make new bone. He sees this when he does extractions on patients. He said he doesn't like having to do an extraction when the patient is on them because there is rarely new bone growth and the site of the extraction does not heal well. So he applies this to what it is doing or NOT doing to help the bones in the rest of a patients body.

Since the purpose of those drugs is to inhibit more bone loss he says it also interrupts the natural process of your body breaking down bone to build new bone. So in a sedentary patient not doing much to build new bone or has high risk fracture it may be ok. But he was thinking of my case where I don't have high risk of fracture yet and I do a lot of weight bearing exercise and take supplements. So he thinks me taking that drug would counteract all of the good things I do. And why so many people on those drugs show no increased bone mass and some lose mass.

Post Edited (cupcakespinkgal) : 8/28/2016 7:16:52 AM (GMT-6)

Posted 8/28/2016 12:53 PM (GMT 0)
Of course I should add this is only his opinion based on what he has seen in patients and how he think it applies to me. I had a tooth extraction last year from a failed root canal while taking the bone builder calcium and within 6 mos I had a lot of new bone growth and he said my X-ray looks really good. So just being osteopenic doesn't stop our bodies from building new bone in a lot of cases if you are doing the right things.

Post Edited (cupcakespinkgal) : 8/28/2016 7:01:29 AM (GMT-6)

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