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Testing on younger adults needs to be done

MamaMarks
1 Recommendation

Hello fellow bloggers~~

It seems that all the medications that are offered for Osteoporosis were tested on 'postmenopausal women’ and not on 'premenopausal people.’ I'm premenopausal and was diagnosed at the age of 39 (I’m now 47) with -3.2 in lumbar spine, at that time, and Osteopenia in hips which has now graduated to Osteoporosis in hips.

I'd love to see some studies done on people that are ‘premenopausal’, both male and female, as there seems to be enough evidence (many people being diagnosed at early ages-M/F) to warrant the testing.

Furthermore, what are the long-term effects of these medications on younger people? It's not like our disease is going to go away so we'll have to take something for the rest of our lives.

I'd love to hear other's intake on this?

Cyn

Explore topics in this discussion:

Cancer Pregnancy Osteopenia Menopause Marfan syndrome Osteoporosis Mastocytosis Stress Heart disease Leukemia Forteo Fractures Fosamax Reclast Rickets Bone cancer Osteomalacia

26 replies

Loods

Hi MamaMarks,

I also share your concerns as I too am 47 and pre-menopausal.

It seems none of the osteoporosis drugs were intended for younger people with this condition, and it does lead you to wonder how they may affect those taking them on a long term basis.

I don't know of any studies done on this age range (although I would like to think there are?) but with the increase of younger osteoporosis sufferers you would think it should be made a priority. All the drug treatments I have seen always say for 'post-menopausal', which gives the impression they don't intend them to be used indefinitely.

JamiAnthony

I am 33 and was diagnosed a few months ago. There are no doctors in my area that will treat me and they say it's just "my bones" and osteoporosis is a postmenopausal disease ONLY. There is a study at Columbia University on using forteo for premenopausal osteoporosis. I am not doing it because more doctors dismiss this than think it's a real disease. Who knows what to believe!

MamaMarks

Loods~

I agree wholeheartedly with you. The drug companies that create the Osteoporosis drugs really need to start doing research on the younger population as well. Why not? There’s plenty of research material (young people) out there for the studies to be warranted. I would volunteer for a research program.

My concern, as should be everyone else’s as well, regardless of age is; what does taking Osteoporosis medication do to our bodies in the long run? My doctor told me that I have to take something for the rest of my life! I’m not terribly nuts about that concept and I’m seriously running out of options of what I can or cannot take or even want to take.

I know many on this web site have taken matters into their own hands and have gone the natural route and some seem to do fine while others continue to have bone loss. I'm seriously thinking about trying that route myself. I'm waiting for my next DEXA test to make that determination.

I just wish the drug companies would get a clue and start doing research on the younger population with this disease. Inquiring minds want to know!!!

MamaMarks

JamiAnthony~

What a shame that none of the doctors in your area want to treat your Osteoporosis because of your age. What type of doctors have you been going to and what are they waiting for? A broken bone or two? That's crazy! Osteoporosis is Osteoporosis regardless of age. Is there any way, not sure where you live, that you can find a doctor that specializes in this disease (Endocrinologist or Rheumatologist) and can start treating you for it? You deserve better care!

Please don’t give up in getting treatment.

Wishing you the best.

Nevadamtnbear

I will join the call for pre-menopausal testing. I'm 35, and just diagnosed with osteopenia of the spine. My PCP, who is very conservative regarding prescribing drugs, said that even with his mentality, he wanted to start me on an osteoporosis drug therapy. There was a pharmacy student with him (my PCP is at the medical school here) and I asked what could they tell me about the affects on pre-menopausal women, particularly considering the fact that my husband and I aren't 100% certain we're done having kids.

I just wish there was more information out there. Yes, it looks like my husband will be getting the ol' *snip snip* in the next couple months, so we're most likely 100% done, and I won't even consider starting until we've taken care of the possibility of getting pregnant.

I'm meeting with my OBGYN today to talk about all this stuff. I figure a second opinion is good. And, I want to talk to a woman doctor who's my same age about it.

Too little information, that's for certain. I might even be willing to be involved in the testing, as at 35, I didn't expect to even think about any of this stuff for another 30 years.

MamaMarks

Nevadamntbear~

Boy do I hear you on that! It sure won't hurt you to get a female physician's perspective on Osteo meds and pregnancy. Hopefully your OBGYN is up-to-date with the disease and the implications of taking Osteo meds. Unfortunately, not all of them are. We younger adults do need more testing done for our benefit that's for sure.

I wish you luck with your decision of pregnancy or no pregnancy!

JamiAnthony

The regular doctors didn't know how to treat it. It's the endocrinologists that say it doesn't exist. How do we know who is right? The endo at The Bone Heath Center said that it simply does not exist before menopause. So why assume he is wrong? More doctors think that it doesn't exist than do. I find it hard to believe that doctors simply wont treat you for no reason. Can anyone show me the proof these doctors are wrong? So far I've seen nothing concrete either way. I would love to know for sure!

MamaMarks

JamiAnthony~

Why assume the Endo and others at the facility are right? Are doctor’s always right? Obviously, according to my DEXA readings, they are not! Doctor’s are only as good as the education that they receive, just like with any field. Oh how I wish they were right though! It would mean that the past 8 years since I was diagnosed, premenopausal, has been nothing but a bad dream. It would mean that I wouldn’t have to take medication (herbal or manufactured) until after menopause! Gee by then, of course, I could possibly be a cripple from multiple fractures that could have been prevented, but was not, because I chose to believe a handful of ignorant physicians who studied at the University of Quackology, all because they didn’t believe that Osteoporosis is a disease that afflicts people of premenopausal status, regardless of all the studies and statistics that say differently, but chose to fill my head with rubbish and not treat me instead.

I was diagnosed, DEXA, at the age of 39 with full-on Osteoporosis. The findings were, -3.9 in the spine and -3.2 in my right hip. I would ask the physicians who made that statement, to you, why in the world they think a person has to be postmenopausal to have Osteoporosis?

I am 47 and am still premenopausal and have had Osteo for 8 years now. I am living proof that you do not have to be postmenopausal to have the disease, so are many, many others on this site. Also, what about the men on this site who do not go through menopause, yet have Osteoporosis? Is that non-existent as well?

In all fairness to you, because I’m not angry at you about this, just the physician and or physicians who told you that Osteoporosis doesn’t exist before menopause, had refused to believe my initial diagnosis because I was so young. So, I went and got two separate opinions by two different types of specialists and each asked me what I was having a problem understanding? My DEXA readings…ALL of them show Osteoporosis. Plain and simple and I’m not postmenopausal now and wasn’t at 39 either.

I am studying to be a nurse (RN) and have been in the medical field since I was 16. I have never, EVER heard of a story where specialists of any kind have said that Osteoporosis does not exist prior to menopause and I used to work for a physician. Stranger things have been known to happen though.

pgreene

I agree that testing needs to be done. I was diagnosed when I was 33 and I'm 46 now. I started Fosamax when it first came on the market. I took it for 13 years. Last October I decided to take a drug holiday per my PCP, GYN, and endocrinologist. Oh, yes, and I'm still premenopausal. I'm due for my next DEXA in February. I will meet with my doctors then and decide if I'm going to restart the Fosamax or do something else.

Peggy

JamiAnthony

I'm not saying anyone is wrong or right, just wondering how do you know who to believe? The doctors I have seen argue the point that unless you have had 2 scans, you can't compare and know if you are actually losing bone density, or if you just have low bone density to begin with. Plus, they argue that if it's a "real" disease, why hasn't the FDA approved drugs to treat premenopausal women? They can be prescribed for some reason, though they are not approved. I guess their feeling is that if the FDA doesn't recognize it, they won't either. Who knows! It's very scary for me though. They found it because I broke a bone very easily. My lower spine is -4.1 and hips are -2.7. I may have been this way forever and have no way to know for sure. Very frustrating!

MamaMarks

Hi Peggy!

How are you today?

I see my specialist at the end of this month and will request a Dexa for this year instead of waiting until Jan/Feb of next year. I want to see if the last two infusions of Reclast have helped.

It's great that you were able to take Fosamax for so long. I took it for about 8 months when I was first diagnosed and after that 8 months I developed GI issues and have not been able to tolerate any of the oral medications.

I really hope these drug companies start doing some research on the effects of the Osteo meds on long-term use with people who are premenopausal. There are a lot of us out here.

I hope your DEXA shows improvement!

Take care and have a great day.

Cyn

MamaMarks

JamiAnthony~

I understand your dilemma, really I do.

Osteoporosis is a real disease no matter how it’s dissected or at what age you are diagnosed. Two types of cells have been isolated and found to both breakdown and rebuild bone, these are normal cells. The disease comes about when the breakdown of bone becomes greater than the rebuilding of bone, hence Osteoporosis or some other bone disease. DEXA will show bone loss, with normal individuals, at about age 35. Some of us are born with lower bone density than others. Normal bone loss will continue as we age, but it’s usually in a steady, gradual pattern, not one that goes off the charts. The kicker is when that bone loss continues to increase, dramatically, and out of the ‘normal’ range. That’s where the diagnosis of a disorder comes in.

My Reclast infusion and all the other meds I have tried for Osteoporosis were not only prescribed but APPROVED to treat the disease, even though the testing was done on postmenopausal women it was still approved to treat Osteoporosis. Not a cure mind you, just to treat.

To my knowledge you absolutely cannot be prescribed a medication in the US (where I live) without FDA approval, unless you are getting it illegally. Research has to show high probability of reversal or some form of improvement in order for the FDA to give the ‘go-ahead’ to manufacture medications for a specific disease. In many cases a medication has been proven to help treat a different disease (Reclast) than what it was originally intended for. This usually comes about by accident. Once that occurs the drug companies then have to prove to the FDA that it does indeed treat another disease other than the one it was specifically intended for. Believe me when I say this, a lot of proof has to be shown in order for the FDA to approve the drug to be used. Once a drug has been approved by the FDA to treat a specific disease/disorder the medication has to be used to treat that specific illness only. A physician cannot give you a prescription for a medication to treat heart disease when in reality he’s trying to clear up a foot problem. A doctor has to justify for giving you medication or he/she can loose their license.

The fact that the medications that we premenopausal adults are taking to treat our Osteoporosis has only been tested and approved for postmenopausal women is what sparked my posting about research needing to be done on people that are not postmenopausal. We need to know what it might do to us in the long run.

I’ve had 4 DEXA scans in the past 8 years so I have comparisons to show how much bone loss I’ve been incurring over the years. It’s always a good idea to have a comparison.

I wish you well and hope my post has helped with some of your questions.

Cyn

JamiAnthony

That's the exact problem I have run into. Every doctor I've been to says that these drugs are not FDA approved for premenopausal women. Apparently they are prescribed alot, but not where I live. They said that the side effects these medications can cause can be worse than osteoporosis itsself. I think that's why many doctors don't want to prescribe it.
There is currently a study at Columbia University in NYC on the effects for Forteo on premenopausal women. Of course, that drug is so expensive, that I couldn't afford to take that even with my insurance.

Have you experienced bone loss over the last 8 years even being on medication?

MamaMarks

JamiAnthony~

Yes, I have experienced bone loss even on medications but my physician told me it would be at a greater rate had I not taken anything. I do not know what my bones have been doing since '07 when I had my last DEXA prior to starting the Reclast. This is one of the reasons why I would like to have a DEXA done this year as opposed to the early part of next year.

I have read on this web site where a few younger people that are premenopausal have benefited from Forteo, although I really fear that drug because of it’s black box warning.

Your story is just another reason why the drug companies need to do research on these Osteo meds with women that are premenopausal.

Take care and thank you for sharing.

Cyn

duzy

MamaMarks,
Thank you for starting this discussion, I am new was just learning how to look for any premenopausal group, myself started new discussion and found later yours.
I am physician myself and believe me most doctors have no idea and I talked to others doctors friends there are more and more pre- menopausal women who have borderline low vit D even in Florida where I live, despite megadoses vitamin D, exposure to Sun. I never heard about any genetic testing, did research and I do not believe disease is well understood yet, it is something being just observed; my internist, a very smart doctor, said she does not know, my rheumatologist started me on Fosamax and I am fearful of side effects knowing them all, however never saw any on any of my patients and do treat men with osteoporosis, she says I must stay on meds till more will be known, she will check dexa in 2 years again, I wander if I should go for second opinion, but it does not seems there is much out there, disease is not well understood. I must have genetic predisposition, many women in my family age 50 had hip fracture, myself 40, so I thank God one discovered treatment and we have access to it , I feel blessed to live today not 100 years ago- they did not have treatment back then, anyway what are you doing about diet, did anybody believe in no meat diet , did it make any difference in your treatment/progression of disease? I love to eat and wander if I should or just not go vegeterian now, sounds too difficult, also I plan with weight training to look like Rocky- it is funny we all have to be fit no excuse, go to GYM a lot, lucky have two sons, they like sport, disease helped me exam my life and make desicions I would otherwise never make, so disease itself was a sort of blessing for me, it helped me realize life is short and cannot just wait in life, hope my story helped you some. I do belive in treatment of disease for those whose doctors refused to start treatment, advise you to go with a list and say you have a friend doctor, request work up: levels of vitamin D, urine calcium, PTH hormon level, calcium serum level and if not - consult with rheumatologoist or endocrinologist depends where you live either one treats. Make notes during visit , so doctor sees you keep records of what doctor says to you, be assertive, it is your health, your life, we have only one life. Good luck!

mrsblythen

im 27 and have been diagnosed 5 months that i have oestiopenia of -2.4 in my hips and -3.5 lumbar.
im taking calcium and d3 tablets called calcitrol. again 99.9% of people taking this drug are post menapausal.
my sister also has ostiopenia. shes 25.
surely with this amount of people just using this site for info being pre menapausal, some study has to be done for future cases. is there some way of getting a study done by presenting a university or collage to do the research.

MamaMarks

Hi mrsbythen~

I'm unsure how to get a drug company to start doing testing on premenopausal women and what these drugs may do to us in the long run. I agree with you that the people, that are premenopausal (on this site alone), should be enough of an indicator that testing in the younger population should be warranted. It's pretty frustrating to say the least.

My doctor was talking to me last week in his office about denosumab. I told him under no circumstances will I go on that drug. I'm on Reclast and this drug is still fairly new for Osteoporosis, although it's been around for quite some time for people who have bone cancer. It’s controversial enough. I told him why in the world would I want to take a drug like denosumab with it's high warnings of immune compromise?

None of these drugs are being tested on premenopausal women and I’m seriously thinking of quitting everything until I become postmenopausal!

Take care,

Cyn

bethanyb

Before more research is done on drugs to increase the DEXA scores of younger people, there needs to be research done on how low DEXA scores in young people correlate with fractures later in life. What if a low DEXA score in a young woman does not mean that she is at an increased risk to fracture over her lifetime? Maybe how much a person's DEXA scores decrease over time is a better predictor of their chance of fracture than how low they start. If that was true, giving drugs to all young people with low DEXA scores would be unnecessary. If these drugs were perfectly safe and the potential side effects of being on them long term weren't so bad, maybe it would make sense just to have everyone take them as a preventative measure, but that isn't the case. Unfortunately, there isn't a lot of money to be made by showing that people don't need to take drugs.

MamaMarks

bethanyb~

I absolutely agree with you. How do we know we need these drugs at such young ages just because of a DEXA score?

I would like to know what these drugs do to us younger people over time, not just DEXA readings, in addition to what you mentioned about the risk of fractures as we get older based on DEXA readings and the fact we are on the medications that were not tested on the younger population. Will it help? Will it create more problems in the long run? Will it even make a difference?

I also think you hit the nail on the head about there not being a profit in showing that people may not need to take drugs, therefore, with my growing frustration with this issue, we will probably never see studies of Osteo medications in people who are not postmenopausal. However would the drug companies make money then? LOL!

Thank you for your input. I always love to read other's insight into things. It puts a new perspective on things.

Take care,

Cyn

Raven1

It's clearly a very difficult decision to make to enter a study if you are pre-menopausal and of child bearing age. I, myself am post menopausal and I can't hurt anybody else if I choose to take a drug. But, if you are the one who has to make a decision to be in a study it's a tough choice to make. It seems like they are having a hard time getting people to participate in Dr Shane's study of pre menopausal women taking forteo at Columbia Presbyterian. Good luck to all of you.

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