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Just DX with severe osteoporosis...need help!

Dutch
0 Recommendations

Hi everyone,

I was just diagnosed with "severe osteoporosis" by way of an e-mail from my Dr's nurse. It came after a bone scan that I suggested I have after being on Prednisone for over 4 years. It simply stated (to paraphrase) you have severe osteoporosis and have a type 1 and type 2 fracture in your spine. We have mailed you a prescrption of Fosamax. You need to take calcium, Vitamin D and exercise more like running or walking. Then I swear it said have a great day. No call us we need to discuss, nothing!!

So as a 49 year old male I am very concerned. read a ton on all the medications and none seem like a viable option.

Any advice or input would be warmly welcomed and greatly appreciated!!

21 replies

windblown

Hi Dutch: Wow what a way to find out about your diagnosis! Well your in the right place to get info, and some good suggestions. Have you checked out all the info at the NOF by clicking the logo above?

Do you want to take Fosamax? Check it out, it may be right for you, just be sure you don't have any of the contraindications, like esophageal probs.

I took Forteo for 2 years and did really well. Don't know if you'd be interested in that, but it is approved for men. Here's a link on Forteo if you'd just like to read about it.

http://www.ccjm.org/content/70/7/585.full.pdf+html?sid=9e07cee4-b325-4378-a f70-e4b2c0b570f2

I hope you t-scores aren't real low, but in any case there's a lot you can do. Your Dr didn't have any suggestions about dealing with the fractures?

Welcome and good luck.

Dutch

Hi windblown,

Thank you so much for the thoughtful introduction. I have not checked out the NOF yet but I will as soon as I'm done here.

Doc's nurse just e-mailed me with what I had mentioned, the supplements and to run or walk for exercise. No follow-up, nothing!! And absolutely nothing about the fractures. He's a great doc but I had a ton of trouble with his staff so it's not totally surprising.

My T score for lumbar spine is -2.0 and for my hips +0.2. Not sure if that's severe or what? If anyone knows I would appreciate it explained. I am doing all my research now as this is a huge surprise (if that's the appropriate word)!

I don't know about Fosamax since I am in the middle of getting my teeth worked on. Also, I haven't read much positive info on this drug. As you mentioned Forteo seems like a great alternative.

Thank you again for being so kind and responding I'm feeling better already!

windblown

Hi Dutch: Your welcome... Here's a link on t-scores that explains them from the NOF.

http://www.nof.org/osteoporosis/bmdtest.htm

It's good to hear you like your Dr, and I know how a non compassionate staff can have a great affect on your treatment.

Forteo is generally used for those with established osteoporosis (score lower than -2.5) *or* someone with a previous fracture. Since you have osteoporosis with a fracture that puts you in another category which some may still be calling severe. It's not normal to fracture, at your age, unless it was the result of a major injury.

Exercise and supplements will help a lot, but unfortunately some find that it *may* not be enough.

I've taken supplements all my life, and exercised, but still got osteoporosis at a young age.

You do have osteoporosis (spine), but I think the main concern (IMHO) is the 2 fractures. Plenty of people have low t-scores and never fracture and some have osteopenia and have a fracture, so we're all different. You definitely don't want another fracture, so doing what you can to raise your t-score would be recommended.

I took Actonel before Forteo, and had to deal with some oral surgeons that didn't want to touch me, even though I had been off Actonel for over a year when I had to have 2 teeth extracted.

If you have any gum disorders, taking a bisphosphonate (fosamax, actonel, boniva, reclast etc) can be more troublesome. Usually the patients that get ONJ do so from the stronger more frequently given iv drugs, but just this week another study came out (from the USC dental school) about the occurrence of ONJ in the oral med treated patients, so it's still a very touchy topic.

If you want to read the latest recommendations on osteonecrosis, just for additional education, the ADA is a good resource since they are the org that has to deal with the treatment of this problem.

Here's a link on it if you care to read it, even though you don't have this problem.

http://www.ada.org/prof/resources/pubs/jada/reports/report_bisphosphonate.p df

The above article was updated a couple of weeks ago, but unfortunately it's only available on a fee basis.

Good luck and there's plenty of others here that can help you along the way.

ladyoftheozarks

Interesting articles from everyone. I have just joined and certainly have no answers, if anything I have questions. My story is that in July of 2008 I fractures my leg with a minor fall. It took 6 months to heal properly and still causes some discomfort. In Dec. of 2008 I was diagnosed with osteoporosis. The recommendation now is for me to start on Forteo since my condition is severe and after the injury. I'm confused even though I talked to my Dr. I have a very strong history of cancer in my family and the fear of bone cancer just makes my head spin. I lost 1 sister to that bad boy. Does anyone offer any comforting words for a 58 year old women scared out of her mind to take Forteo but afraid not to....

DrJamesWebb

I think there is some good advice in the posts you have seen already.

One thing that I would add is this. Before starting fosamax or any medication for osteoporosis, your doctor should run some lab tests. These are to screen for secondary causes of bone loss.

For you, we know that steroids are probably the cause. However, it's important to make sure that there aren't other issues, such as vitamin D deficiency.

The National Osteoporosis Foundation recently increased their recommended daily intake of Vitamin D to 800-1000 IU for patients 50 and over. That's just to prevent deficiency.

Make sure that your physician checks your vitamin D level. It should be 40 or more. About 90 percent of the patients we see (most who have fractures) have this problem

Always consult your physician. I recommend finding a qualified physician who has an interest in osteoporosis. Preferably they will be involved with the NOF or at least aware of its recommendations.

Try to find a specialist who deals with osteoporosis in your area. There are lots of doctors that do bone density tests, but few that specialize in treating osteoporosis. Looking at the NOF for a member of the PPN can be a good start (http://www.nof.org/ppndirectory/index.asp)

You need the best team on your side to beat this disease. Good luck!

There is also more information on my blog at www.tentozero.com.

JW

windblown

Hi ladyoftheozarks: Welcome... I understand your reluctance with Forteo, but if you read the Cleveland Clinic pdf above you'll see that the rats that contracted bone cancer were:

  • predisposed to osteosarcoma
  • dose was up to 60 times the human dose
  • medication was administered over their entire life
  • giving med while bones were still growing


When the rats were given the human dose over 18 months, none of them contracted cancer. The FDA approved this drug stating that the risk of cancer in humans was small since the study on rats showed they contracted it when given huge amounts for a much longer time.

Humans can only take this for 24 months at a dose of 20 mcgs.

Good luck, I did really well on Forteo. If you've ever had radiation to the bone you can't take Forteo.

Dutch

Thank you Doc!!

Wow I'm stunned at how helpful everyone has been, Thank you so much.

I did have a vitamin D deficiency about a year ago
and started on 1000mg a day. Unfortunately it seems it was to late. However I was just tested again and my levels are normal.

You are so right regarding finding a Dr who actually treats Osteoporosis. According to the NOF website their are none in Houston affiliated with NOF. I find that truly hard to believe. Again, my Dr simply e-mailed me my diagnoses and mailed me a prescription for Fosamax and said see you in 12 months. I'm 15 minutes away I am a little perplexed at the way this diagnoses was presented to me.

Again thank you so much for your response!!

KMFDallas

Caution is still needed on taking Forteo. The mouse model has been a proven indicator for adverse reactions/outcomes from medications. The FDA has asked for additional research and data from the drug companies on this drug.

windblown

Hi KMF: You mentioned that the FDA is asking for additional data on Forteo, can you tell us the name of the article or where we can read about it?

I haven't done any recent reading on Forteo because I completed my 2 years on it 7 months ago and the only side effect I had was greatly improved t-scores.

If you have a link on this, can you post it, I would like to stay abreast on these things. The problem I'm having understanding this, is with regard to the mouse model where no osteosarcoma was seen when the rats were given the human dose for the limited time. Osteosarcoma appeared in some of the rats only after receiving the super large dose (up to 60 times more) for much longer than 2 years.

I and most Drs don't believe that Forteo is for everyone, and you have to fit the profile to get it prescribed, which many don't.

Thanks...

1022

I had some of the roof of my mouth removed with cancer in 1978. I never smoked or drank liquor. I have had an artificial pallet since then. I took Forteo for a 2 year period 2 years ago. I finished in October of 2007. I had 11% bone growth. I am now on Actonel once a week. I have had no problem with it. In 1998 I started Fosamax. I was on it for about 2 weeks and had to stop because of extream pain in my upper back. I think much of my osteoporosis problem was caused by hyperthoroid and not keeping a check on the osteopenia I was diagnosed with back in 98. Keep searching for an answer.I am sure you will find something you will feel comfortable with. This group will have something to offer you.

DBM

I will say essentially what Dr James Webb said but not as nicely, as I do not have a lot of respect for doctors in general. I believe you need a specialist in this matter. In my area, where we have a couple of very good hospitals, I would call the physician referral service for a referral. I have always had excellent luck. You do need all factors that could affect you looked at and for that you need a special physician. On no account would I let a doctor treat me the way you doctor has treated you. I would continue my own research on the disease but do more research on finding the right doctor. Regarding medication, Fosamax has little effect although it seals the bone to reduce leaching. The disadvantage is that it has rather a long half-life so if you switch to another like Forteo the efficacy of the new medication is greatly reduced because it cannot penetrate the bone as well as it should. Having said that, I should mention that I was on Fosamax for 6 years with no improvement and have been on Forteo for 10 months. A recent DXA scan showed no improvement under Forteo but I am continuing with it to complete the 2 year course.

Dutch

Dear DBM,

Thank you for being so blunt I truly respect that. Dr's are the ones that got me in this position (4+ years on high doses of Prednisone and then discovering it was a mistake) makes me very weary on them as I have seen over 15 so far with a different diagnoses from each. None were specialist regarding osteoporosis since, as I mentioned, I just learned I have it. I really am afraid to take the Fosamax since I know what Prednisone did to ruin my life. I always consider quality of life as opposed to quantity and that will remain my final decision making factor regarding any future medications. I will call the local hospitals to find someone who can help. I have never done that...great advice!

Thank you also for the info on Fosamax and Forteo. I would truly like to know if anyone has tried the anabolic steroid Deca Durabolin street name Deca. I have read several studies on it's impact with AIDS and Kidney patience for not only muscle growth but osteoporosis. All with very little side effects and very positive effects on bone loss. Having lost so much muscle mass from the Prednisone I thought this might be a good alternative.

I realize the negative PR going around regarding Anabolic Steroids but it seems like a viable alternative. Include Human Growth Hormone with that.
Any thoughts on these would be greatly appreciated.

Good luck with the Forteo I hope it works wonders for you!!!

KathyS

I think I'd be leary of running ... walking sounds good but I'd get a second opinion about running and putting stress on your spine like that....

Alli

If you have had two fractures I would say NO to running as part of exercise. Did your doc know you had two fractures when he/she recommended running???? Welcome to the board and I am sure you will find lots of support and info. Do lots of research on Osteoporosis it is surprising the amount of knowledge we do not know.. Good Luck!!

Dutch

Really??? The Doc did know I had these two fractures when he said to run. I love running, sigh!!!

You all know way more then I do, thank you all once again for your input. I can't tell you how grateful my wife and I are.

Kind regards!!

LindaS

Windblown, I was reading the Cleveland Clinic info on forteo and the fda and it says even the rats that had only 3x the normal dosage got cancer. All the rats got osteosarcomas. I'm not sure if they are tumors or cancerous tumors.They mentioned the more increase in bone mass, the more chance for bone cancer. Here is a section from the fda I copied and pasted.
381. Two carcinogenicity bioassays were conducted in Fischer 344 rats. In the first study, male and
382. female rats were given daily subcutaneous teriparatide injections of 5, 30, or 75 mcg/kg/day for
383. 24 months from 2 months of age. These doses resulted in systemic exposures that were,
384. respectively, 3, 20, and 60 times higher than the systemic exposure observed in humans
385. following a subcutaneous dose of 20 mcg (based on AUC comparison). Teriparatide treatment
386. resulted in a marked dose-related increase in the incidence of osteosarcoma, a rare malignant
387. bone tumor, in both male and female rats. Osteosarcomas were observed at all doses and the
388. incidence reached 40% to 50% in the high-dose groups. Teriparatide also caused a dose-related
389. increase in osteoblastoma and osteoma in both sexes. No osteosarcomas, osteoblastomas or
390. osteomas were observed in untreated control rats. The bone tumors in rats occurred in association
391. with a large increase in bone mass and focal osteoblast hyperplasia.
Scare me to death.

windblown

Hi Linda: This info is easy to miss in the Cleveland Clinic article, even if you are looking for it. The paragraph I reference is on pg 592 last para on the left of the screen. In the second study done on fisher rats, where they gave the *full grown* rats a dose equivalent to the human dose of (20 mcgs) none of the rats contracted cancer.

I'll have to take a closer look at the FDA and Eli Lily papers to find that info in those, so I'll get back to you.

If you want to read more before I get the chance to check it out, look for the second study done with the full grown rats receiving the human dose (equivalent) for varying periods up to and no more than 20 months.

I'll let you know what I find out when I can look further. But to see the Cleveland Clinic info go to the page and para I mention above.

Good luck and keep those eyes open, it's *good* to second guess everything, that's how we learn :-)

LindaS

Windblown, Thanks for getting back to me. I will read the Cleveland Clinic report more carefully. The rats in the first study were 2 months old. I thought the rats were full grown at this age. I tried to check this info online. I can't be sure one way or the other.

April995

Welcome Dutch,

I was told by several Drs. Do NOT twist at the waist.
I blew out a disc two years ago, just by putting a dish into my deep dishwasher.

I personally would not be running at this time .
Its also important to keep your posture straight.

I also have Arthritis in my neck, and wrists. I have found that a good Physical Therapist has been a life saver for me.

This website has such awesome information.
I'm trying to figure out what would be a healthier way for me to rebuild my bones.
I took a one month Boniva and it gave me allot of joint pain. I figured, if something is going to give me that much pain, its not good for me!

I have to say, My Dr. sat with me for 2 hours explaining about my Osteoporosis, but he only explained about the prescription drugs to take.
I didn't get too much info on all the side effects.
He also said to take Calcium and D 3 with the drugs.
There are still so many question I have, and I seem to find allot more information here, on the alternatives to drugs.

Take Care,
April

aida

Hi Dutch,

Ive been on Forteo for 10 months nd had BD scan today - improved my BAD score of -4.9 .. now it is -4.1. Hooray. Your scores are twice as good as mine.. I really had no choice but to use Forteo. Have been told that Fischer rats are different to others - they live a little longer I think. AND remember that rats NEVER stop growing.... Humans do. and Rats have a short life 2-3 years. I weighed that up against a human life of 70 -80 years and decided it was worth the risk. I live in Australia and my specialist is a leader in his field (endocrinologist specialising in osteoporosis) I have complete faith in him. I too had a fracture (1 year ago T7) But I also was diagnosed at same time with Scheuermanns disease (degenerative spine disorder in teenage years when tissue between vertebrae stops growing). No known cause or cure. This lead to my density not getting to peak at 30. Then in 50s menopause robbed me of most of what was left. I have to improve HEAPS or will be like a 90 year old in a few years.. Good luck. Aida

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