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Old 09-23-2010, 08:13 AM   #1
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Just diagnosed

Hi, I have just been diagnosed with osteoporosis. I have been on steriods for 18months for PMR and giant cell artritis, so have been on strontium for my bones since I started on the steriods. I found out about the osteo when 2 of my vertabra's collapsed 6 weeks ago, they fractured without trauma. Was having excrusiating pain and doctor sent me for an xray.

I have since seen a consultant at the hospital who i felt gave me no info or support. He wants to change my medication to bonvia. I did explain that I have stomach problems including hiatus hernia thats why the Rheumatologist put me on strontium, but i think it went in one ear and out of the other. He wants to see me in three months. Im still working and am really floundering as im not sure what I should and shouldnt do.

I am seeing my GP tomorrow to discuss with him. At the moment im walking around scared that another one's going to fracture. Am having a bone scan next week. Any advise or info would be much appreciated.

Thanks

 
Old 09-25-2010, 06:12 PM   #2
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turtlelady HB Userturtlelady HB Userturtlelady HB User
Re: Just diagnosed

Hi - What makes your situation particularly challenging is the fact that you must continue to take the steroids. You are lucky to have found such a sympathetic Rheumy. Most physicians (in the U.S., at least) won't event consider strontium as an option. There are bisphosphonate drugs administered IV which bypass the digestive tract but the side effects from them are even scarier. Two thoughts - Are you taking calcium supplements along with the strontium (and vit D, very important)? Are you a candidate for Forteo (synthetic parathyroid injections)? That stuff did major miracles for me. I know the pain. I had half a dozen spontaneous vertebral fractures before surgeries/Forteo. You seem to be on the right track. Question everything. Assume nothing. Credentials do not guarantee either competence or caring. The best of luck to you. Keep us posted on your progress.

 
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Old 09-26-2010, 10:31 AM   #3
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Sensitivo HB UserSensitivo HB User
Re: Just diagnosed

Hi thompson61,

I'd be interested in knowing what kind of strontium, and how much, your rheumatologist recommended. I understand in some parts of the world strontium ranelate is available as a prescription. Here in Canada, as far as I know, it is not. So, I'm taking strontium (from citrate) purchased in a health food store -- one 341 mg capsule per day.

 
Old 09-27-2010, 11:53 AM   #4
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Re: Just diagnosed

Hello to you,

I have just been diagnosed with osteoporosis as well. I have been given Alendronic acid, to be taken weekly, and Adcal-d, tobetaken twice aday. I have no idea how I will react to this medication, as I have only just started them. 4 days after my bone density scan, I was knocked over by a dog and fractured my wrist. The irony was not lost on me. I am hoping my medication willhelp. Sorry, I can't be much help to you. I am still very limited in my knowledge of this disease.

All the best to you, Carol.

 
Old 09-28-2010, 03:23 AM   #5
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Re: Just diagnosed

Quote:
Originally Posted by turtlelady View Post
Hi - What makes your situation particularly challenging is the fact that you must continue to take the steroids. You are lucky to have found such a sympathetic Rheumy. Most physicians (in the U.S., at least) won't event consider strontium as an option. There are bisphosphonate drugs administered IV which bypass the digestive tract but the side effects from them are even scarier. Two thoughts - Are you taking calcium supplements along with the strontium (and vit D, very important)? Are you a candidate for Forteo (synthetic parathyroid injections)? That stuff did major miracles for me. I know the pain. I had half a dozen spontaneous vertebral fractures before surgeries/Forteo. You seem to be on the right track. Question everything. Assume nothing. Credentials do not guarantee either competence or caring. The best of luck to you. Keep us posted on your progress.
Hello turtlelady

Yes the steroids will be with me for a while to come unfortunately. My Rheumy is great, I have every confidence in her and very approachable. I also take Adcal-D3 one a day. Im going to look into the injections, havnt heard of this before. I had a good discussion with my GP about strontium and bonviva which the consultant wanted to change me to. We decided I would stay on the strontium for now as there doesnt seen to be any advantages to changing, in fact it would probably cause me stomach problems. Six fractures, must have been agony, I dont think i've ever had pain that bad and I have quite a high pain threshould. Thank you for the info and support I really appreciate it

 
Old 09-28-2010, 03:46 AM   #6
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Re: Just diagnosed

Quote:
Originally Posted by Sensitivo View Post
Hi thompson61,

I'd be interested in knowing what kind of strontium, and how much, your rheumatologist recommended. I understand in some parts of the world strontium ranelate is available as a prescription. Here in Canada, as far as I know, it is not. So, I'm taking strontium (from citrate) purchased in a health food store -- one 341 mg capsule per day.
Hi Sensitivo

I take Strontium renelate granule sachet 2g. I take it every evening at least two hours after food or drinks that contain milk. Can have a herbal tea. I dissolve it in water. The body absorbs it overnight so it doesnt sit in the stomach like the weekly or monthly slow release alternatives and I have it on perscription. When i first started taking it I developed a rash on my chest but after a couple of weeks it dissapeared and I havnt had any side affect from it at all. I've been on it 17months now, hope this helps.

 
Old 09-28-2010, 04:13 AM   #7
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Re: Just diagnosed

Quote:
Originally Posted by Cockle View Post
Hello to you,

I have just been diagnosed with osteoporosis as well. I have been given Alendronic acid, to be taken weekly, and Adcal-d, tobetaken twice aday. I have no idea how I will react to this medication, as I have only just started them. 4 days after my bone density scan, I was knocked over by a dog and fractured my wrist. The irony was not lost on me. I am hoping my medication willhelp. Sorry, I can't be much help to you. I am still very limited in my knowledge of this disease.

All the best to you, Carol.
Hello Carol
Sorry to hear you've been diagnosed as well. Its really scary isnt it. Its good to be in touch with other people who have simular problems though. Im in a support group for the polymyalgia rheumatica and i've learnt so much. I think its so important to arm yourself with as much knowledge about the condition as possible. I didnt have any problem with the strontium except a rash on my chest for the first two weeks and then it went. What bad luck to break a bone just as your coming to terms with the condition. Here's hoping you dont have any problems with the medication. Good luck, Keep in touch

 
Old 09-30-2010, 10:40 AM   #8
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Re: Just diagnosed

Thanks for the response. I wasn't diagnosed until after the first 4 vertebrae fractured.
I was able to work with the first 3 but the 4th put me entirely out of commission.
The majority of people are diagnosed based on their Dexa scan scores. Dexa scans measure bone density, not bone strength, which do not necessarily correlate. A minority of folks with lousy dexa scores are actually going to spontaneously fracture anything. (That is why we highly recommend "The Myth of Osteoporosis" by Gillian Sansom as important reading for the newly diagnosed. Helps keep things in perspective.) You and I are the minority whose bones actually do fracture. Still, the good news is that even the severest of osteoporosis can be reversed, even without those wretched bisphosphonate drugs. I can no longer be scanned as my spine is encased in titanium top to bottom but I have taken some nasty spills of recent with no damage other than to skin (and ego). Keep us posted on your progress and best of luck!

 
Old 10-09-2010, 05:46 PM   #9
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livelaughlove3 HB User
Re: Just diagnosed

Hi Turtlelady. I was also just diagnosed with osteoporosis. I noticed you said you were going for a bone scan. Did you go yet and if so, what were the results? I have not had any fractures; my Primary Care Physician wants me to take Boniva. I am really reluctant to take any of the prescription meds out there based on what I've read about side effects. My plan to to increase my weight-bearing exercises, get more dietary calcium and take supplements of calcium and vitamin D. My vit D level was lower than it should be, so I'm thinking I have not been absorbing the calcium properly.

I have read some postings on this site regarding taking strontium and silica (Biosil) along with calcium and vit D. Also, there were some posts about Exorb-a calcium supplement that is found online. I'm not sure about the effectiveness of any of these supplements in slowing bone loss.

It's kind of a catch-22 since you are supposed to exercise more, but then you may risk fractures...I hope things go well for you.

 
Old 10-10-2010, 07:23 PM   #10
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Re: Just diagnosed

Thanks - LLL3! No, the scans, which have never been too accurate in my case, are now impossible since my spine is completely encased in titanium. You sound like you are on the right track. I do strontium and Biosil as well as calcium, vit. D, and magnesium
and I haven't broken anything in a couple of years despite some very bad spills.
I would also avoid the bisphosphonates for many reasons.
Good luck!
Carol

 
Old 10-11-2010, 11:04 AM   #11
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Sensitivo HB UserSensitivo HB User
Re: Just diagnosed

turtlelady,

I, too, have decided against taking bisphosphonate medication. I've recently started taking Strontium Citrate, but haven't heard about Biosil. Did a health care practitioner recommend this to you, or did you research it yourself?

I did a lot of research on exercises to reverse/slow down bone loss, and eventually decided on a rebounder (currently waiting for it to arrive by FedEx). I chose a bungee cord style which is supposed to be easier on the joints and back than those with metal springs. Apparently, NASA has extensively researched rebounding exercise to reverse the bone loss experienced by astronauts being in a zero-gravity environment, and found it very effective.

 
Old 10-11-2010, 11:07 AM   #12
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Canna HB User
Re: Just diagnosed

Hi Turtlelady just inquiring about the biosil you take is it liquid or capsule form and any other improvments while taking it? I bought the liquid but its harsh on my acid reflux so I may take the caps.

 
Old 10-11-2010, 04:51 PM   #13
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Re: Just diagnosed

Sensitivo - The Biosil idea came from this board. (I love these people!)
Again, I don't really have any proof of improvement other than lack of recent fractures, but, hey, that's good enough for me given my history.
Good luck!
Carol

 
Old 10-11-2010, 05:03 PM   #14
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Re: Just diagnosed

Canna - I take the capsules. The vile taste of the liquid turned me off. I'm on PPI meds for life as a result of Fosamax induced esophageal erosion so I can relate to the GERD
problem. If it does for bones what it has done for my nails I'm a lucky lady indeed.
But I have no way of knowing for certain.
Best,
Carol

 
Old 10-12-2010, 01:52 AM   #15
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Re: Just diagnosed

Quote:
Originally Posted by turtlelady View Post
Thanks - LLL3! No, the scans, which have never been too accurate in my case, are now impossible since my spine is completely encased in titanium. You sound like you are on the right track. I do strontium and Biosil as well as calcium, vit. D, and magnesium
and I haven't broken anything in a couple of years despite some very bad spills.
I would also avoid the bisphosphonates for many reasons.
Good luck!
Carol
Hi Turtlelady, Sorry, these threads are a little difficult to keep up with, especially since I don't have a lot of experience with them. I guess I got you mixed up with someone else who said they were getting a scan. Also, thanks for the encouraging words about me being on the right track and the information. You sound like you're on the right track also since you haven't had any fractures. Do you know if the silica (Biosil) is sold over the counter? Who makes it? I know the strontium can probably only be obtained online, right? I'll keep you in my thoughts and wish you continued success. LLL3

 
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