What has your experience been?

Hi Everyone:
I am very new at this, in fact I think I'm still in a state of shock over being told I have severe osteoporosis.
Up until seven months ago I was walking 5 miles a day and felt as though I was becoming more emotionally "grounded".
Then one day my foot starting hurting so bad that I was limping. At first I thought it might be plantars faschaitis. So I followed the treatment suggestions on the internet, so much for self-diagnosis.
After months of no improvement, in fact it was worse, I saw an orthopedic specialist. He diagnosed me with a stress fracture. No weight bearing were his instructions, ha! Now, thats an easy one.
Still no improvement. Next he had me test my BMD - now he tells me I have severe osteoporosis and sends me to an endocrinologist, specializing in osteoporosis at OHSU.
Today was my first visit and we took many vials of blood to rule out many different causes. He also ordered x-rays of my spine in two locations and both my hips.
I was also sent home with the urine catch device so as to give him a 24 hours worth of urine.
He said the severity of my osteoporosis warrants aggressive management. He ran the many choices of medications available along with proper Calcium and Vit D supplementation. But he felt the most useful for my case would be to receive the infusion at the hospital or send me home with self injections of forteo. Of course I am concerned about many aspects of my treatment and prognosis. One of which is insurance claims for such expensive treatment. Obviously there are many insurance programs but I am wondering if my story sounds familiar to anyone and what response you had from your insurance companies.
Thank you for your time and knowledge, it is appreciated.
Sincerely,
sdonesley

By rosaflor
Posted January 25, 2008 at 4:29 am
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My experience is very parallel to yours. It sounds as if we were both lucky enough to be referred to an expert who would do a complete evaluation before recommending treatment---some of my friends just got a prescription for pills, nothing more. I have chosen Reclast, the once-a-year IV infusion. I understand that this drug carries some risk but my osteoporosis is so pronounced that I feel I have no choice. You ask about cost; my understanding is that a year's worth of Fosamax costs about the same as the once-a-year Reclast . I checked with Blue Cross and they do cover it. I refused the oral meds because they are associated with esophageal bleeding and ulceration. Anyway, I am scheduled for the first of my three yearly Reclast infusions next week. Let's hope for the best. BTW it also turns out that I am "spilling calcium" and have a big Vitamin D deficiency due to some kind of genetic defect in the tubules of my kidneys---nobody ever found this before. I am now taking 50,000 units of Ergocalciferol 1 x week for 8 weeks then 1 x month "forever". I am kind of apprehensive about starting such a potent drug, and it's not like you can just stop taking the pills because, once they put it in, it's in. This feels momentous. Stay tuned and I'll post a follow-up after I've had the infusion.

By Cate1
Posted January 26, 2008 at 7:47 am
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My heart goes out to you! One and half years ago I found out I had breast cancer. After radical surgery and a round of chemo I have a clean bill of health. Shortly there after I was diagnosed with osteoporosis. Although certainly not as severe a case as yours, I can relate to that feeling of shock. One of the things that keeps me feeling positive is the knowledge that even though I've been thrown a curve ball, I'm still calling the shots. It's great to have this forum to share experiences and knowledge so that we can make informed decisions about what happens to our bodies. Good luck with your journey.

By allyoop
Posted January 26, 2008 at 11:37 am
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Hello Sdonesley:

Read your note re: insurance issues with great iterest. Two years ago, after much testing, etc., my endocrinologist strongly suggested that I go on Forteo since all the oral meds tried had given me severe epigastic problems. The fact that I have history of jaw problems (surgery x3 and bone transplants) the Boniva was not acceptable as a drug of choice for me due to the possibility of osteonecrosis of the jaw as a serious side effect. After much deliberation and my doctors "pushing" (and convincing) the insurance company to accept payment of Forteo for me, I began the once daily injections. (I am on a Medicare RX plan) This was all okay until I reached the dreaded "donut hole" and after that, they would no longer pay. It was then up to me. Needless to say, as a retired nurse on a fixed income, $700.00 a month was something I could not afford and so I had no choice but to D/C the Forteo.

A year later, I heard about a clinical study on Forteo being done at Helen Hayes Hosp. in W. Haverstraw, N.Y. and contacted them re: my being a possible candidate for the study. After three months of scans, blood work, x-rays etc., I was accepted into the study and am now on Forteo and being closely monitored by HH. They have recommended that I discontinue taking calcium while on the Forteo since Forteo and calcium are both metabolized in the kidney and therefore high calcium intake while on this drug may lead to kidney stones. I have not heard of this from anyone else but am being monitored for hypercalcemia every six weeks through blood work. Am continuing on Vit D. though.

Don't know if this helps you at all but I would thoroghly check out the insurance company because if your plan is a Medicare Rx plan, you could deplete your prescription allowance very quickly. Good luck and keep us posted.

Ally

By Charlotte_Hearing
Posted January 30, 2008 at 5:32 pm
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When I was around 40 to 50 my one hip would do as your's is,but no pain. When I was about 55+ My hip became too painful so i used a wheelchair at work. When I was 66. I had a replacement and the rt leg had a oninch bone spur and that was the source of terrible pain. I had osteoporosis too and spine degeneration. Two years later I had the left hip done and a few years later I had a bone graft on the left femur bone as the bone had become thin. I take miacalcin because the others ruin my stomach. My back is arthritic and causes my legs to hurt when I walk. I do not say all this to discourage you. Medication and exercise can help and diet too. Prayer works too. Let me know more of your situation.

By Charlotte_Hearing
Posted January 30, 2008 at 5:37 pm
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I would go for the Forteo. Perhaps the pharmacutical people will help you in vouchers. Sometimes doctors will help. I have read where people are definitely helped. I thought I might
have to take the shots too. The expense is terrible.

By bgillis
Posted January 31, 2008 at 4:32 pm
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Hi S Donesley, wishing you all the best! I have severe osteo as well....hips in the 3s & spine in the 4s with no fractures...age 67 & have had same numbers for 10 yrs! May I ask what your DEXA numbers are? BGillis

By Sharon3
Posted February 1, 2008 at 8:58 pm
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I was diagnosed with hypercalcuria a number of years ago. I am 55 years old and have full blown diagnosis of Osteoporosis.
I do every 6 month a 24 hour urine collection that must be kept chilled until I turn it into the lab. Imagine carrying it around your "bonnet" the collection device, the jug, and then a cooler to keep it chilled until you turn it in. I have a cooler dedicated to this procedure during my collection day.
My calcium in urine at last visit for 24 hours was 360. That is with being on 50 mg daily of hydroclorthiazide. I am basically "peeing" away my bones because of my kidneys and a leaking tube.

I remember when they were running initial blood tests, my insurance paid for all but one test, a parathyroid telepetide test that cost about $160.00 that I had to pay for out of pociet. That particular insurance company could not relate the diagnosis of osteoporosis and hypercalcuria to that test.

Sincerely,
Sharon

By marion2
Posted February 2, 2008 at 5:22 pm
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Sharon
I, too, have was diagnosed with hypercalciuria about 3 years ago at age 53. After my dexa scan it was determined that I had severe osteo with the secondary reason being the hypercalciuria. My original urine test was 300 and my dr. put me on chlorthalidone. It did help, but because it is such a strong diuretic, I had a hard time keeping my potassium level in the correct range. So, I am now taking a brief diruetic drug holiday and after two weeks off the chlorthalidone I just did a 24 hr urine calcium and kidney stone work-up. Depending on the results, I would like to stay off the diuretic and hope that my being on Fosamax will help with the bone loss due to the hypercalciuria. If I have been spilling calcium my whole life and have never had a kidney stone, I guess that is pretty good. Have you had kidney stones? Has anyone in your family? My father had at least one that I know of, so I am assuming he had hypercalciuria too, although it was never diagnosed. Are you taking anything for your osteo? I heard that sometimes after being on a diruetic for a while they stop working because the body gets used to it. I was on Forteo for 2 years until 8/07 and now am following up with Fosamax. I am interested in hearing more from you.
Thanks,
Marion

By Sharon3
Posted February 2, 2008 at 8:27 pm
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Hi Marion,
Our stories are quite similar. I, too, have never had a kidney stone. In fact, the Doctors are quite surprised. I see an Endocrinologist 2 x per year.
My current medications are:
3 - 25 mg tablets daily of hydroclorithizade
1 70 mg with Vitamin D of Fosomax weekly.
1 Postassium tablet Daily
1 Vitamin D 50,000 mg tablet monthly.
My last urine count was 360 range for calcium in urine.
I can recall growing up my grandmother on my mom's side severly hunched over with a dowages hump.
My mother at age 63 had very noticable dowager's hump before she passed away unexpectedly.
With that family history, I asked my doctor for a Bone Scan about 6 years ago. By the way, I don't know if I mentioned that I will be 56 in April.
I read in a recent book that it takes up to 10 years for the hydroclorthizide to work.
With constantly going to the bathroom would love to stop taking.

Are you also on a sodium restricted, told to watch your salt type diet. Very hard to adapt to a life.
Every food, it seems, has salt.
I never was heavy into salt, and the Doctors find that very hard to believe. I had to see a Nutritionist/Dietician and record what I eat to show them this.
Do you track what you eat daily as far as calcium, potassium, etc

Do you do any type of exercise program?

Awaiting your reply when you have a moment. This is comforting to know someone out there is similiar to my problem, by the way. I had just joined a few weeks ago.

Sharon from Wisconsin

By JilleWhite
Posted February 3, 2008 at 11:25 pm
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I was diagnosed at age 30 with SEVERE Osteoporosis. Have a long story since I"m now 46 and have done many things to help. Know you are not alone AND that it is NOT the end of the world. I know it can feel like a death sentence, but IT IS NOT. I feel good that you have a dr. who is doing tons of tests, etc. before treating you. He sounds very knowledgable. Rest in that. Do your own research as you can, ask questions, etc... hang in there!
Jill

By sdonesley
Posted February 19, 2008 at 11:53 am
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Hi BGillis,

I apologize for taking so long to write back to you. I appreciate that you responded to my discussion.

I am 56 years old, my numbers are, hips: -2.9 and spine: -3. Like you, I also have no fractures in the hips or spine - Good for us!!! My fractures are in my foot, heel and ankle area. In fact that is how my osteoporosis was discovered.

Just about 8 months ago, I was walking 5 miles a day and loving it. Then what seemed as if "out of nowhere" my foot started hurting bad enough to make me limp. Typically for me, I tried to let time be my healing factor.

Finally, in August of '07 I went to see an orthopedic specialist (sports medicine) and he x-rayed my foot and diagnosed me with a stress fracture. Still, it meant little to me other than the inconvenience of using an ortho boot and crutches. After months of no improvement and my doctors effort to get me to agree to a bone mineral density test, I finally agreed just to appease him. So, in late Nov. I had the test and saw the doc again in a couple of weeks. He then told me I had severe osteoporosis and referred me to the endocrinologist I am seeing now.

My endocrinologist is affiliated with Oregon Health Science University - Bone Mineral Dept., I think he is good. He has been very thorough and takes the time to explain things to me, as well as cover all the options he can provide. He listened to me carefully about the pain I experience in my hips and legs, sometimes it is so severe that I cannot walk at all. The same day he ordered labs, (blood and also a 24 hour urine catch for me to do at home). He ordered more x-rays and called me the day after I saw him to tell me I have no fractures in the spine and hips, but I do have degenerative joint disease in my spine and hips, which helps to explain why I have so much trouble with walking, sitting and standing.

His recommendation for me is the IV infusion of reclast in an effort to "gain back some bone and hold onto it" He says it probably won't be a lot, "perhaps 6 - 10 percent". He thinks I need an orthopedic surgeon (hip replacement). Of course, all of these things worry me tremendously, it is impossible to know what the right thing to do is for each of us as individuals.

My family wants me to go ahead with the IV infusion and take things one-day-at-a-time. I am also interested in alternative approaches in conjunction with mainstream treatment. But honestly, the idea of a hip replacement makes me want to run the other way, if only I could!

It feels as though this has all happened so quickly and it has, at least my awareness of it. But in fact, I have a history of contributing factors, hypothyroid which I have managed with thyroid supplements for years. Back and hip pain that I thought was caused by my own doing or some kind of human weakness within me. I had several doctors treat it with steroids, one even gave me an infusion of steroids in my spine and hip. But no one ever mentioned degenerative bone disease before this. I don't know, maybe it had to get this bad before it could be diagnosed.

Thanks for listening to all my rambling on about my health woes, I know I am just one of many and not nearly the worst off. Please feel free to write to me whenever you would like. I am very interested in you and your experiences.
sdonesley

By bgillis
Posted February 19, 2008 at 4:34 pm
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Thank you, Sdonesley for responding to my write-up! I am sorry for all the pain you are having. I guess I am just lucky as I have no pain (I am 67, diagnosed w/ SevereOsteo in '97). I do my 5 miles daily (ran for 13 yrs daily from age 37-50 & then I started to get injuries so I took up walking! I would die if I had to stay home & discontinue walking which is so important to me (especially since I am alone) I also don't want to put on weight.. I play a lot of golf & hope to continue for many yrs. My numbers are worse than your's....hips: in the 3s & spine in the 4s).

Thyroid pills do bad things to bones! I took them from age 8 to 37. The reason I got off is I had read an article that the pills cause cancer of the thyroid! I went to an Endocronologist who said I wouldn't be able to get off as too many yrs of having a blocked thyroid gland. I asked her to give me a yr so I went off the pills slowly. My gland has been totally normal since! I am very lucky; she felt that due to my running, I had jolted the gland to start working again.....all those yrs, it was dead....luck, lucky!

I don't know anything about Reclast except for what I have read on this site. Wishing you all the best & hope that all the pain passes so you can resume your life as before......Bonnie

By KathyG
Posted August 23, 2008 at 1:33 am
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Hi BGillis,
I'm so sorry to hear about all the pain you are in . I just want to let you know that I'm 51 and over 2 years ago without warning I had major pain in my right leg and hip. It was brutal. I went to see Ortho Dr. and I had den. joint disease. she told me I had to have a total hip replacement. I almost fell out of my chair. It was not easy, it was horrible. The pain was not bad the horrible thing was for me to adjust and learn patience. It is a slow process at first but it gets better. It is worth it. As a woman I had a hard time mentally but it has been 18 months since my surgery and I'm fine. I'm past that now. Research your surgeon to make sure you get a good one. In 6 weeks after surgery you are released but you have precautions for 1 year. (taking it easy on the new hip) If you can't walk (I was 80% bedridden) and in major pain get it done. You will feel like a new person. I hope this helps take away some of your fear of course any surgery is no fun. Good Luck to you. Keep me informed.

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