Hello All! I've been reading these forums for a while but this is the first time I've posted.
I'm currently wrestling with whether or not to take Forteo for my osteoporosis. I have the opportunity to take part in Dr. Shane's Forteo study for premenopausal women at Columbia University, if I want to. I previously participated in the Idiopathic Osteoporosis study at Columbia and had a great experience working with the researchers there.
I've had issues with my bones my whole life, starting with a broken leg (tibia) two weeks before my first birthday. I was diagnosed with osteopenia around age 12 (by DEXA, due to my large number of broken bones), and with osteoporosis at age 30 (again, by DEXA). My T-scores aren't the worst out there (-2.5 spine, -2.7 hip), but since they've steadily declined over the years, I don't expect them to improve without some sort of intervention.
My main goal is to be able to maintain a lifetime of activity. I currently compete in triathlons and study/teach Pilates. I'd also like to have kids - I don't currently have any.
The pros for participation would be to learn more about my bones, to possibly gain bone density, and to have the cost of the Forteo covered by Eli Lilly. I'm a very compliant patient and could give Columbia good data.
On the other hand, I haven't had a fracture in at least 10 years, so I'm not really currently a high-risk candidate who would normally get Forteo. I'm also afraid of the black box warning. And by participating, I might prevent someone with worse bones or fewer financial resources from participating (I'm not rich, but I do thankfully have a steady job).
I have a wonderful endocrinologist (Dr. Alan Burshell at Ochsner in New Orleans), and had a good visit with him this week to go over my Columbia IOP results. I had a bone biopsy and those results indicate that I have a high bone turnover rate - so I build bone faster than the average woman, but I also break it down faster as well. So would the Forteo even help me as much as it might help someone with a low bone turnover rate? Would I be able to keep any gains I made with Forteo, or would my body just get rid of the new bone naturally? These are questions that nobody seems to know the answer to. In fact, that's sort of the point of the study. Postmenopausal women are often given bisphosphonates after Forteo to help them maintain their gains. Not many women (including me) are willing to take bisphosphonates this young.
I'm very lucky to have had great doctors (I grew up in Omaha and saw Drs. Recker and Gallagher at Creighton) - and Dr. Burshell and Dr. Shane are top-notch as well. Still, this is a personal decision and I'm just not sure what to do.
Right now I'm leaning toward not participating in the study and starting a Forteo savings account, in case I need it in the future.
Does anyone have any other thoughts? Is anyone currently participating in the Forteo study?
-Casey
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31-year-old about to make a difficult decision
- By spacadet
- Posted September 2, 2009 at 11:57 pm · 19 replies
- In Premenopausal women (ages 25-50) with osteoporosis
- Shared with the public
Explore topics in this discussion:
Osteopenia Cancer Pain Forteo Fractures Osteoporosis Reclast
19 replies
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- Newest first
- By LRFL
- Posted September 3, 2009 at 8:47 am
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Difficult decision, you are very young and will have a number of options in the future. Also you are not experiencing fractures and you are building bones. These are things you know for sure. What do you know about Forteo and how well you will react to it? Unknown. You need to weight the pros and the cons and go with your guts! Good luck
- By Loods
- Posted September 3, 2009 at 9:12 am
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It all depends on whether you are willing to give yourself up as a guinea pig, because basically that is what you would be doing.
On the plus side it may pay dividends in the end and give you more protection for the future, but and it is a big BUT supposing you have a poor reaction to this drug, what then? Some of these side effects can last for years, are you willing to accept that?
As you seem to be managing your bone health so well and have not had any recent breaks I'm not sure this treatment will prove very beneficial at this stage in your life. Also if you want to have children, will this drug interfere with fertility in any way? Think very carefully before agreeing to do this treatment, you have your whole life ahead.
Whatever you decide, the best of luck to you.
Kind regards Loods
- By bonnytiz
- Posted September 3, 2009 at 1:21 pm
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I agree with Loods on this one, you are very young and from what I understand, after taking Forteo for the 2 years, when its stopped unless you take some other treatment the bones will go back to where they started from.So unless you are willing to do that, taking Forteo would be a waste of time, and you run the risk of side effects.
As you are managing your bone strength without medication are you willing to take part in this?
- By JamiAnthony
- Posted September 3, 2009 at 2:24 pm
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Does Dr. Burshell think you should do the study?
- By John58
- Posted September 3, 2009 at 7:40 pm
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Like others have said it is a challenging decision for you. I'm in a similar position having recently been diagnosed with osteoporosis at 58 years of age. Mine appears to have developed from a lifetime of malabsorption arising from me having coeliac disease. Doctors have advised me to commence Forteo which I'm most reluctant to do because of the side effects and FDA black box warning. I've been on a gluten free diet for about 9 months and am also taking a calcium supplement called Reparen (not sure if it's available in the US but it is in Australia where I live). I've also increased my weight bearing exercises.
Good luck with it all.
- By sdivas
- Posted September 4, 2009 at 12:20 am
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Casey, your post has been in my thoughts most of the day. I think if you read over your post a few times, you will see that you have made up your mind. I think you are looking to validate your decision. I don't feel anyone can make the decision for you. I do think it's wise for us to listen and follow our intuition. Personally, I have my own boundary regarding medications, but that is based on where I am currently with my bone loss. Step back for a minute. I think you may see that you wrote your answer within your post.
- By PartyPlanner
- Posted September 4, 2009 at 2:55 pm
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Like John58, I have celiac and have had for 30 years. My osteo numbers are spine -3.43 and hips -2.7. I am taking calcium with D. I have tried the bisphosphonates and had the esophogeal problems. I was told to take Reclast but I am very reluctant to put that in my body with a year dose. I have previously had pamidronate infusions for a year and had terrible aching for several months after. I also had pain in my gums and they felt loose. Because of those results it scares me to death to take Reclast. So, now the doctor has prescibed Forteo. And, as has been mentioned, the fact that cancer developed in rats when injected, I shudder to think what it might do to me. I understand your concerns, Casey. I lay awake at night trying to make a decision about the Forteo.
Let's pray that all of us facing these decisions make the correct one.
- By YoungMum88
- Posted September 5, 2009 at 2:50 am
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My main concern for you is about affecting your chances to have children in the future. I am young and have osteo but the doctors strongly advised me to wait until i am certain i have finished having children because they just dont know what side effects the drugs have on fertility and the baby.
I have similar scores to you and would be able to have another child providing i follow some important rules like NO breastfeeding.
So before you make a decision just have a good think. If you can cope for a few years with your current state then i think it would be wise to wait until after children. You dont want to do any damage and not be able to experience one of the most amazing things in life that only a women can experience.
Good luck xx
- By waters
- Posted September 5, 2009 at 8:54 am
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Good morning Spacadet, I also spoke to Dr Shane and would now qualify for the study too. I have a family friend who administers forteo and she strongly recomends that I do it. But, I'm going to wait. I am not positive that I'm done having children, and Dr Clarke at Mayo (another amazing endo and knows Dr Shane too), says that forteo is our 'big gun' and since you can't take it twice, it makes sense to hold out as long as it looks like that made sense. I took a high estrogen birth ctl pill and it had an amazing impact on my bones. I'm back after my 2nd baby from -3.4 to -2.6, and I feel safe again. I will reconsider forteo after I'm done having babies for sure and when I feel like it'll be most beneficial. Good luck to you and stay in touch. I'd love to hear more about the study that you did do at Columbia already. It does sound like a wonderful experience w dr shane, and too was hard to pass up. They only had 8 out of 20 when I spoke to her. How many do they have now? I also had a bone biopsy too- we have a lot in common! Take care and call anytime 770 248 1312. Stephanie
- By Raven1
- Posted September 7, 2009 at 5:06 pm
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I may be Dr. Shane's oldest patient, but I think your fortunate to be able to be considered for studies, but, it's a lot easier to take a drug (forteo) when you are beyond childbearing. It's been wonderful for me. I'm about 3/4 of the way into forteo with no side affects, just stronger bones. I wish I could keep taking it. I have to decide on the next drug and I don't like bisphofonates. Good luck to you. Maybe harvest eggs before you start taking forteo?
- By spacadet
- Posted September 8, 2009 at 12:30 am
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JamiAnthony - Dr. Burshell is neither recommending for or against it. He's interested in any benefit I might receive from a scientist's viewpoint, but he has said he wouldn't prescribe it to me at this point in my life because he doesn't think I need it. He did help me develop a good list of questions to ask myself and Columbia in making my decision.
sdivas - You are right - I have pretty much made up my mind not to take the Forteo at this time. It is nice to have a forum like this where I can find supportive voices!
Youngmum and waters/Stephanie - You are so sweet and I wish you and your families the best. I also think it makes sense to wait as long as possible to take any serious drugs. There are 14 of 20 now enrolled in the Forteo study with three more scheduled to start before the end of the year. So it is filling up.
FredLaredo - Did you seriously post here just to try to sell me some snake oil? Please go away. I'm declining your very impersonal friend request and I advise other members to do so as well.
In another post I will try to describe my experiences with the IOP study.
- By AussieLass
- Posted September 8, 2009 at 7:37 pm
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Spacadet, sorry but I don't believe in blackballing other members.
Nor do I believe the removal of FredLaredo's posting was warranted.
He was reaching out to you, sharing what he believed to be a promising discovery. He did this to help you. His intentions were good. I felt hurt on his behalf.
You have been in the unfortunate position of dealing with bone problems for most of your life and in that context must have been exposed to a great deal of information regarding your condition over the years. You would have come across many promises of quick fixes and cures and become somewhat immured to those false promises. Impatience in reaction is understandable given those circumstances.
The product FredLaredo was talking about was osteodenx. When you are new to various medications and supplements out there, it is easy to be beguiled by the fast talk of promoters of wonder products. Remember we are all looking to find the key to wellness. FredLaredo has a personal friend, a 72 year old woman, who has achieved good results with this product. It is easier to believe in something when the evidence is close at hand. He wanted to share that with you.
I believe that osteodenx contains lactoferrin about which there have been trials (with mice at this stage) and the results have been promising. It is not always wise to dismiss something out of hand. There is always something new to learn.
This site, from my understanding to this point, has been about mutual support, sharing of information and inspiration and above all tolerance and kindness in dealing with others.
We come from a variety of backgrounds and our experiences and understanding will of necessity be diverse.
FredLaredo used the mechanics of this site to offer you friendship. It was done privately. Your response to that should have been done privately too. It is your right to decline such an offer but not to publicly humiliate a member and ask others to share in that.
You will have been heartened and touched by the degree of support you have received with your first posting. You found compassion and concern and I am sure that will continue. You are young and it's so unfair that you should have had to bear this problem for so much of your life. You have a positive and sensible outlook so they are great tools to utilise.
We don't know all there is to know about the personal pain behind each posting. I believe a little kindness goes a long way.
- By sdivas
- Posted September 8, 2009 at 8:04 pm
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spacadet, please feel free to contact the volunteer moderators or Team Inspire if you have any concerns about sales promotions and/or if you are receiving any private messages that make you feel uncomfortable. Community members should not receive sales promotions for any products. Sandi
- By AussieLass
- Posted September 8, 2009 at 8:52 pm
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Sandi,
I would be most astonished to learn that the communication in question was of a commercial nature. Certainly, there was a reiteration of what the promoters say to explain the functioning of the product but aren't we allowed to put that forward for consideration and not be accused of having commercial bias? Discussion and not censorship is what we are about aren't we? Please tell me that's so!
I do not honestly believe the member involved had any ulterior motives. I do not believe that there is financial profiteering here. If I am found to be wrong, I will acknowledge it but that's not my feeling.
As for the request for friendship, I also received one and as I said, it came through the mechanics of the site. There was no uncomfortable private message. I guess to some, the abruptness and impersonality of that tool might cause offence as was I think the case here, but I accepted it as I believe it was meant to be accepted - as a reaching out for contact and recognition. Nothing devious here.
I think we are taking a wrong tack with this one and because of the serious step of one member advising myself and others to decline a friendship I have become involved. I believe it was an unkind and hasty overreaction.
I don't bear anyone ill will here. Just like to see a fair go for all.
- By sdivas
- Posted September 8, 2009 at 9:31 pm
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AussieLass, all community members need to feel comfortable contacting the volunteer moderators or Team Inspire if they feel uncomfortable with any private message or Friend request message. Unsolicited advice or recommendations are sometimes not welcome through private message. Thank you for sharing your opinion. Sandi
- By AussieLass
- Posted September 9, 2009 at 12:44 am
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Thank you Sandi. You handle a difficult job well and I've noticed and admired the way you show kindness and compassion in your postings.
I do agree with what you say. Anyone feeling uncomfortable about a friend request should feel at ease in going through the volunteer moderator or Team Inspire. That's the "Report a member" function, right?
Problem is, that's what didn't happen.
The statement was that the friend request was "very impersonal" not solicitous or overly personal.
I am really sorry to push on with this, but I think that it is important that what you are saying, actually does happen and happens privately and is dealt with privately and that no member skips this and openly and publicly calls for others to reject a particular member.
Your step is the safeguard under all circumstances. What do you think?
Sandi, why was the posting in question removed? The member in question was only very new. It seemed harmless to me.
I am interested to know, for my own benefit when choosing or continuing a discussion topic, how and why these decisions are made. As I said, I could not discern commercial bias.
In this particular case, if the product is indeed "snake oil" then it should be open for discussion on that basis with evidence as to why that opinion has been reached. And opportunity of reply. We are here to help each other through discussion, not to attack each other. What do you think? Where have I misunderstood?
- By sdivas
- Posted September 9, 2009 at 12:01 pm
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AussieLass, community members may reach the volunteer moderators by sending a message. Click on volunteer moderator User name --- "send message". Community members may also request volunteer moderators as "Friend" so we can be quickly reached. Also, community members may do the same with Team Inspire. Report a member may also be used. Thanks. Sandi
- By TeamInspire
- Posted September 9, 2009 at 12:12 pm
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AussieLass,
This is getting off the topic of the discussion but I will reply here since it is already being discussed.
Yes, we try to handle member issues privately. Sometimes they spill out into the discussions and they have to be handled there. In this case, the post was removed because we do not allow marketing in our groups and this particular member had already been asked to stop asking members to contact him offline for this purpose. He is no longer a member of the group.
In the past month or so, we've had a rash of people join the site for the sole purpose of marketing Osteodenx. This is an inappropriate use of our site and not something we allow. This includes excessive or repetitive postings about a website or product as well as asking members to contact you offline for more information.
If you have anymore questions, please let us know.
Beth, TeamInspire
- By AussieLass
- Posted September 9, 2009 at 6:46 pm
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Sandi, thank you for the info. It's good to know about those those various avenues.
Beth, thank you so much for setting out the circumstances clearly for me. It makes sense now. Obviously I had no idea that the member in question had been admonished previously for offering offline contact or indeed that there was a rash of misuse of this site by promoters of osteodenx.
I believe you can understand where my concerns came from.
It's reassuring to know that the team is vigilant about such matters.
Spacadet, while I don't agree with the method used, your instincts appear to have been right and I do apologise.
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