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Old 05-18-2010, 02:45 PM   #1
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Unhappy Scared

I was just diagnosed yesterday with what they tell me is severe osteperosis. I don't know hardly anything about it, but the Dr said mine was severe. He wants to talk to me about starting that Foreto. I am already disabled and an amputee on the left side below the knee, I have chronic pain from that and have been going to a Pain Clinic for several years now.

I also have been diagnosed with COPD and they have me on 2 liters of oxygen therapy 24/7. I have had both shoulders surgically repaired due to Rotator Cuff tears, Had my gall bladder out, have had 3 seperate surgeries for a hernia all on the right side, Have had bone taken from both hips to put in my left ankle before the amputation, Have had as many as 20 + surgeries before the amputation in an attempt to save the leg, have had to have a vien surgically removed because of my Prosthetic leg fit, had a coxxyectomy, and I think there may be more I can't remember.

I was in a severe car accident at 20 years of age and have gone through multiple surgeries througout my life and the leg was finally amputated in 1995. I was in a car where the driver had just come back from vietnam and he had a flashback I guess, and he ran us into the side of this mans house at about 90 miles an hour. I broke both of my legs and he only broke his Jaw on the steering wheel and he was okay in about 6 weeks.

I have been all my life going through surgery after surgery. I have been on several inhalers such as Advair, Spiriva, Albuteral for my COPD, and I suspect that may be why he wanted to do the bone density test. I figured it would come back normal, but instead it came back showing I have very severe Osteoperosis which I know very little about. He told me I need to be very careful because I could have a fracture very easily. Iam supposed to go talk to him about it on the 25th which is next tuesday. Iam a grown man and I just started sobbing when I was told about this. With all I have already been through how will I ever deal with this?

I live alone except for my little Shi Tzu Miss Angel and I have to try and do everything by myself. I also know the medicine he is suggesting is very expensive but I should be able to get help with that. Iam already on about 12 medications. Iam just literally scared to death at some of the things I have already read about side effects of this Foreto. I did sense that my body aches seem to be getting worse and worse. I have read where they say the steroids in the inhalers probably was a huge contributing factor in my diagnosis. But if I need the inhalers to breath properly with the COPD, how can I continue with them if they are causeing my bones to deterioate?

I know this has been long and I have been through so many surgeries, but this time Iam scared because I don't know whats ahead. So please bear with me oKAY?

Don

 
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Old 05-18-2010, 03:51 PM   #2
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Re: Scared

You have come to the right place...there are so many wonderful people to offer support and understanding here. I'm amazed at all the obstacles you have overcome in your life... I know many of the folks that will post back to you know a vast amount of information on osteoporosis. They have helped me overcome my fears and live life one day at a time. I, too, have severe osteoporosis...found out at age 45 and no I am 50. So far, I have had no problems. I take calcium and vitamin D daily and work out 5 days a week. You will need to look at all your options for treatment. Many that post here do not take the meds because of the possible side effects, but some do. Also, many take different supplements. I think you will be hearing from the more knowledgable posters soon. Hang in there!

 
Old 05-18-2010, 05:26 PM   #3
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Re: Scared

Quote:
Originally Posted by texastechex View Post
You have come to the right place...there are so many wonderful people to offer support and understanding here. I'm amazed at all the obstacles you have overcome in your life... I know many of the folks that will post back to you know a vast amount of information on osteoporosis. They have helped me overcome my fears and live life one day at a time. I, too, have severe osteoporosis...found out at age 45 and no I am 50. So far, I have had no problems. I take calcium and vitamin D daily and work out 5 days a week. You will need to look at all your options for treatment. Many that post here do not take the meds because of the possible side effects, but some do. Also, many take different supplements. I think you will be hearing from the more knowledgable posters soon. Hang in there!

 
Old 05-18-2010, 05:29 PM   #4
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Re: Scared

Thank you soooo much for your response. I know most people wpould have a hard time at all the surgery I have had, but I have been going through medical issues ever since that accident. I hope you are right and I get a lot of advice. I go to the doctor next tuesday and I want to know the right questions to ask.

Don

 
Old 05-18-2010, 09:34 PM   #5
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taape HB Usertaape HB User
Re: Scared

I was scared and shocked when I first learned that I had severe osteoporosis too. I'm on Forteo and it does work to build bone density. I haven't noticed any side effects but you may want to talk with your specialists to see if it would interfere with your other medications.

It's recommended to do weight bearing activities to help build bones. Do you know if you could use your leg prosthesis again so you could be upright and putting weight on your good leg and on both hips? Yes, steriods are a contributing factor for bone loss but if you need the medication to breathe then you do.

I broke my leg last year and I was so scared that it wouldn't heal because of the osteoporosis but it eventually did, it just took a few weeks longer than soeone without osteoporosis.

The Forteo manufacturer has a customer care program for patients without insurance or insurance that wouldn't cover it. Have your doctor work with you on that part if you decide to take it. Let us know how your doing.

 
Old 05-19-2010, 03:05 PM   #6
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Re: Scared

I happened to think about something. About 6 years ago I had 3 deterrioating disc in the back of my neck I believe they were 4 5 and 6 or something like that. Anyhow they used bone from a bone bank and put in two Titanium plates to hold everything together. There are about 6 or 8 screws holding it all together. Since I have been diagnosed with severe Osteroperosis, is it possible that my vertabre will become so weak or damaged that all that may turn loose? If it did turn loose what would happen? I still have the xray here in my apartment. They show up very clearly. THIS WORRIES ME BECAUSE ITS SEEMS LIKE IT WOULD BE LIKE A NAIL IN A ROTTEN BOARD. What are you thoughtss about this? I am also haveing a good deal of pain back there and also weighing in is the rotator cuff surgery on both my right as well as my left sides. Iam worried about those Titanium plates though. Could they turn loose?

Don

 
Old 05-19-2010, 06:44 PM   #7
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Re: Scared

I have the same fears as you do although I haven't had back surgery. I actually was a candidate for an artificial disc but was disqualified due to my very low bone density. I also wonder what happens if I need to have a portion of my back fused, how this can be done with such bad osteoporosis.

You apparently had the surgery before you knew you had osteoporosis even if you did have it at the time of your back surgery. I suppose that the titanium rods could work their way loose and I would ask your osteoporosis specialist to speak with your surgeon to help answer your questions.

There is back cement which has been used to hold vertebrae fusions in place and some artificial discs have been cemented in place. I don't know if I can refer you to a website here but I'll send you a private message if I can figure out how to with the information.

I tried to send you a private message but you don't have this feature turned on.

Last edited by taape; 05-19-2010 at 06:51 PM.

 
Old 05-20-2010, 05:38 AM   #8
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Re: Scared

since you didn't know much about osteoporosis and really didn't know what questions to ask, here's one you should ask before you take any meds: what was your score? I have a doctor that freaks out at any level and is pretty ****** at me for not taking meds when mine was -1.6 on m y first scan...without talking about other options. After all my research, I don't even believe in osteopenia, which is supposedly what I have. How do we know that my score was ever any different? What if this is what my score has been since childhood? Since they don't test women until menopausal, how is there any validity?

Since the second scan, I've begun working out with weights (I used to just jog). I'll have another scan in late summer which will be 2 years since last one. I'm very interested to see if weight bearing exercise has made an impact as I have no plans to take the meds due to the potential side effects.

And FYI, I'm a 64 year old female, 5'2", 110 lbs, have had asthma for 15 years and take an inhaled steroid every day for it.

Just something else for you to think about.

 
Old 05-20-2010, 11:41 AM   #9
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Re: Scared

Well I really haven't talked to the doctor yet but Iam supposed to go this coming Tuesday. I don't know what the numbers are except he says I have it very severe. I will find out what the numbers are and get back to you after I talk to him. You said you had taken inhaler for a long time due to Asthma. I have had chronic COPD and it is bad enopugh he has put me on Oxygen 24/7 around the clock. He has be on Advair 500/50. Also Spiriva, and also Albuterol I use for a resue inhaler. He has me on some kind of nasal spray called Rhinocort,and since my car accident when I was around 20. I have had around 25+ surgeries before as well as my amputation, and he has me on Methadone 20mg 3 times a day, and Hydrocodone 7.5 one in the mornimg and one in the evenng for Break Through Pain. I think someone on here suggested that jheavy Pain Medications helps the bones to deterrioate as well. Yopu can believe me though I will certainly take your advoice and find ouit evey factor I need to know before I begin anything. I know when they put me on the nbreathong medicines Iam now on no one ever suggested that it coul;d cause Osteperosis or I didn't eveb know the stuff had steroids in it. Iam taking 3 seperate inhalers. The advair is the strongest they have. After my vist on tyhios comimg tuesday I will have much more imformation anmd be able to share it with the folks on this board. I know you all know much more than I do because I know nothging about Osteroperosis and hence that is why Iam here. It does worry me though if my bones are getting thinner or weaker will the Titanium plate that were put in 6 years ago hold with the screws that are holding them in there. I am coming here to find out every question I need to sk him and Iam makeing a list so I can ask him this coming Tuesday. I know I am experiencing more pain than I was, where those plates are and that concerns me. I don't like the side effects that are mentioned either. I already have a tendency for leg cramps, and they are so painful when they happen I have to just scream out until it quits. Thanks for the responses everyone and as soon as I find out more of what this doctor says I will share. If yu read the other post I have had suregery after surgery ever since I was 20. Iam now 58. I had aleays wondered if one of the pain patches wou;d be any better than the methadone he now has me on. And thats another thing. Before I was put on Methadone I wasn't told anything at all about how difficult it is to come off of it. Also if I were to get bad, Iam here by myself all except for my lette dog Miss Angel. Its all I can do to keep my meals fixed. And I suspect diet has a bif part in this. Well I shall go and thanks to everyone for your support. I really appreciate anything I can learn.

Don

 
Old 05-20-2010, 05:20 PM   #10
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Re: Scared

I understand that about the pain meds too. While a lot of people believe that inhaled steroids can be at fault for bone loss, I don't find any what I consider to be credible research that substantiates it. As an FYI, my ex was on the med school faculty at UAB which is one of the top med schools and research centers in the country. So I take a lot with a grain of salt because I know the inner workings of the research community. My gyno probably hates me for it too but my internist and allergist were both on faculty with my ex and understand where I am coming from...so to speak.

Lots of good wishes sorting this all out.

 
Old 05-21-2010, 09:18 PM   #11
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lonesomedove51 HB User
Re: Scared

Does anyone out there believe that my bone could get bad enough that the screws holding the plates in on my neck could possible work loose. I thought maybe I ought to see about that before it happens don't you think? Mybe they can use cement and solve that problem.

By the way you all are a great bunch of people and I appreciate you all very very much. Like I said I know nothing about this. I am not the best typer so pleae bear with me. And thank you all sooooo very very much!!!!!! What would I do without you. You all are a God Send????

Don

 
Old 05-21-2010, 10:56 PM   #12
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taape HB Usertaape HB User
Re: Scared

You might want to ask your osteoporosis doctor and find out for you if he or she knows the answer about whether the screws could come loose or can refer you to a surgeon to answer your question. I hope you can get the you information since you seem quite worried about it. Let us know how your Tuesday app't goes.

 
Old 05-22-2010, 07:33 PM   #13
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Post Re: Scared

Hi Don, Kind of funny because I have a brother named Don. He is 63 and lives in Maine and is living with one lung. Other one had cancer and needed to be removed 8 years ago. He takes several different steroids and inhalers and lots of other medications every day. He's taking his first trip alone (without his wife) this next Tuesday to the mid west to see our brother. Anyway, I have Osteoporosis and Monday the Neurosurgeon will be talking to me about major lower back surgery with all the metal and screws. I also fractured my T12 vertebra in November of 2009 and the Dr. said that was because of the Osteoporosis. In June I will begin my first once a year infusion with Reclast, and hopefully that will help with the Osteoporosis and building bone. I have not worked since my fractured vertebra in Nov. because of all the pain and the recent findings of the lower back. I too am a little concerned about the screws and metal that will be put in, and it holding, but I don't have allot of choice in the matter. I've heard pros & cons on the drugs for Osteoporosis and perhaps with your doctors help you will be able to make a decision that is best for "you". See if your doctor can do a blood test for vitamin D. I had one recently and my score was below normal, so the Dr. put me on vitamin D supplements. Don't start taking them though unless you are tested first.
Let us know what your doctor says after you see him. You are not alone.

Last edited by Precious55; 05-22-2010 at 07:33 PM.

 
Old 05-23-2010, 08:38 AM   #14
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Re: Scared

sorry...responded to wrong quote

Last edited by nobones; 05-23-2010 at 08:45 AM. Reason: responed to wrong quote

 
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