Well, this is not so easy to write. Today I had a dexa at 11 months on forteo .Results close to when I started forteo. I have to say I was so tense and worried that things would be much worse . I guess because boneman said with high ntx which I have that you have to be worried about losing. So I worried about losing.
total rt hip -2.9
total lt hip -2.7
After 11 months forteo
spine -3.4 same
total rt hip -2.6
total lt hip -2.3
Femur neck left and right decreased .1 on each side. I have been told placing the dexa on the same place on femoral neck nearly impossible. So hard to say if that is a decrease really as so close. This is not the same dexa machine. But the same type GE not hologic. Also my numbers are preliminary and may change although the person doing it said final numbers will probably be the same.
Also rec'd lab results back today showing ntx 220 (last time about 3 wks ago 212) and bsap 33 (last time 23) Doc says absolutely forteo is working. That while dexa doesn't show increase, that forteo is metabolically working and the architecture would be improved. When I said I was disheartened, he said he wasn't and that I should not be. This doc is an undisputed major expert in the field and involved in all the latest research and has been for over 20 yrs. So, while feeling deflated , I know that he knows this stuff better than the vast majority of docs and certainly better than me. So I will listen to him.
It looks like I am going to be stopping forteo now, and we will reassess at 12 months. His thinking is that I am past a certain point on the benefit curve .
I am trying to hold on to a positive attitude. As some of you know, I am very physically active and not really sure how I can amp up routine. The doc said there is nothing I need to change. My d level is being watched and is very good now. I think I have now got the various pieces in place. My results were not bad in the sense of decrease and for that I am thankful. I did hope that I could invite you all to a big whoopee party after the dexa. It just didn't happen like that.
Last edited by osteoblast; 09-04-2007 at 08:41 PM.
Sorry to hear you didn't get the improvement that you had hoped for. From the numbers you posted it does look like you had more than .1 of improvement in your hips although the spine stayed the same. I don't understand why you decided to stop the Forteo as you could take it another year and maybe have even more improvement in your hips and hopefully some in your spine. Did your doctor say why he thought you were past the benefit curve? Try and keep your spirits up as best as you can.
Hi osteobalst...sorry to hear you didn't get the results you'd hoped for. Keep in mind that you are doing everything YOU can do and haven't done anything wrong. listen to your dr..he sounds like a good one. Now..my advice to you is do something good for yourself..take a walk, go to a movie, have a great big ice ream cone or good cry..whatever makes you feel good. take care...phyllis
I know EXACTLY how you feel, but try to look at no change as holding steady and therefore no loss, which is considered to be a gain. I went through some down days, and I let those feelings flow over me, and then I moved on to be grateful for where I am and what I have in my life. If you don't mind, could you share your Vitamin D facts. I have had trouble with vitamin d absorption and I am thinking that it could have had an effect on how the forteo worked. I guess I'll never really know, so what I need to do now is concentrate on getting it up and keeping it up. What are you doing to get yours up? Do you think I need to get it under control before I start the next treatment? It has been 3 weeks since my last shot and I know the sand is running out of the hourglass for me in terms of having to make a decision. I am totally avoiding starting a bisphosphonate-I don't know why. Many friends of mine are doing just fine on various meds, so it's not like I have been hearing negative stories from them. I appreciate your sharing.
Taape- I spoke with the doc again and he reassured me that microarchitecture changes have occured and that stopping now is to hold the microarchitecture changes with the bisphos. That while the bonemarkers indicate forteo is working that now is the time to shift to the bisphos. And then later after one year reassess to possibly again do a year of forteo. Apparently there is something to this changing gears approach. Hyperstimulation with forteo and then going into a low rate with the bisphos and repeat cycle . As trail had indicated and I have read there are docs rapidly going back and forth between forteo and bisphos in 4 month segments. So, there is something to this change action that is interesting the doctors.
Phylwill-Thanks much for the support, I like the ice cream idea! Anyway, I am not going to let this stop me. And, I am trying to get over the notion of discouragement. The doc just doesn't accept this as a problem or failing of the med. PERIOD. I am trying to look on the possibly good side of this. One, there is the switching gears effect , I referred to above. Also, in 12 months or more, the docs will know more. There will be more clarity about denosumab AND I have also heard that denosumab may if it becomes available be used in combination with another treatment to boost the effect.
Hi Osteo: I know you must feel discouraged, but I definitely agree with your dr on this, "it is" an improvement, just not as great as you had hoped.
Your good at knowing what to do to reinvigorate yourself, so I'm not going to tell you how to do that, you are the best judge of what will boost your spirit.
I'm still having a hard time understanding why you feel that your NTx score is negative, but you know best. I've read studies done, by your dr, and time after time increased NTx and PINP scores were at the 218% increase from baseline on Forteo and this was viewed as a positive result. Once you start the Fosomax, your scores will hopefully decline because that's what those meds do to collagen measurements.
When I had my second QCT, my score went from -3.6 to -3.4 and I told the dr that wasn't much of an improvement, and she looked at me, quite pointedly, and said "it's still an improvement." She explained that usually t-scores rise very slowly and it's normal to see a .2 increase after 12 mos. I thought it seemed ludicrous, but after thinking about it, I couldn't possibly say that I was worse, and that any increase is just that, an increase, just not what I hoped for but I was expecting something that was unrealistic.
Good luck with the new treatment regime, I hope it works well.
Hang in there I'm sure your just around the corner from a great increase!!!
Trail-I am glad of the .3 left hip and .4 right hip increase. While my spine stayed the same my xrays show I have several hemangiomas (clusters of blood vessels)at the L1-4 level. A specialist told me the hemangiomas could make my dexas look worse. As forteo is supposed to have more of an effect on spine than hips , I don't know why I would have the reverse result so I wonder about the hemangiomas skewing my results.
Anyway, the way I look at it now is that the last 12 months is behind me and I am going to focus on goals for the next 6 months.
I'll just go over my exp. with the vit d. First, when my dose was increased it did not show up in the vit d blood test as an improvement for some time. My endo at the time told me it could take several months to show up on the blood test. Another doc with more of a vit d background said with a high dose 50,000 a week - you should see quite a bit of gain by 6 wks. So be aware of this lag thing.
Second, I think my vit d was low for several reasons at a few points on the forteo. My first doc dosed too low at 800 then said go to 1200-this was inadequate esp. in the middle of winter at my very northern latitude .
Third, forteo eats up vit d. The package insert states "The median serum 25 hydroxyvitamin D concentration at 12 months was decreased by 19% in women and 10% in men compared with baseline." No doc mentioned this to me. While I read the insert when I started forteo, this didn't register .When looking at your situation don't discount the forteo effect.
Fourth, is vit d test reliability. I actually called a vit d national expert at one point when I was so frustrated . He said the test has an unreliability factor. It seems you have to test, and re-test till you have a feel for what is going on and the maintenance dose right for you.
Fifth, I had to look at the type and quality of the vit d I was taking. At first I took a formula that had vit d 2 in it. Apparently d2 is inferior. The high doses the docs prescribe is vit d2 .Also I was told that d2 will fall quicker than d3. .Also, I really wonder if some of the d3 I took was effective. I tried to find the best high dose d possible. What I found was Maximumd3 from pro-pharma in mo. I have only recently started this vit d so I don't have a track record with it .You can research the product by searching MaximumD3. Look out though , there is a look alike site . This dose is 10,000IU. That is the only dose it is made in. Now I am taking a pill every other day . But only blood tests will show how this d3 works out.
Sixth, there seems to be quite a difference of opinion about where your d level should be. One doc told me 30 is adequate. At this point , I think the best info I have obtained would be something like 50-70. With monitoring required .If others have info on optimum level , please share.
And, I should add that not only was I intent on getting the D level right to support the forteo project but there are other benefits I was hoping for .Research shows a decrease in falls when vit d is adequate. I noticed when my vit d improved , I no longer had pains in my legs at night- this is complicated because at the same time I worked on an iron deficiency. And, there does seem to be alot of news about vit d possibly playing a role in preventing cancers. Also, a vit d deficiency may play a role in autoimmune diseases , as I have Hashimoto's , I wanted to up the d for this aspect as well.
You said you have not started your fosamax yet and it is several weeks since you stopped forteo. If your d is presently low but you are increasing your dose , because of the lag in the improvement showing up on your blood test, you may end up delaying the fosamax start beyond the month .
Good luck with your vit d project. I think the vitamin d council site is a good place for info on dosing , levels , and related research.
Last edited by osteoblast; 09-05-2007 at 04:04 PM.
DesertBloom- Thanks for your kind words in putting this into perspective.
That is interesting about the research where you saw that the ntx went up over 200 plus percent. If you recall where you saw that I would love to know. If not, that's ok . It's just good to hear of such ntx increases. With my ntx scores way above what was in the forteo insert, it spooked me. And, when boneman came to give me a specific warning about high ntx -- it had an effect. It shouldn't have bothered me at all - because the doc had said no problem. I suppose this is what would be called an irrational fear.
You indicated that your doc said it is normal to see a .2 increase after 12 months. Sorry if this is obvious, but you didn't say after 12 months on what drug? What were you referring to?
Now I understand...I thought you said they were reassessing you in one month but now I see it's one year. I'm glad your doctor could find the progress at the microarchitectural level. Don't give up.
Hi Osteo: Sorry I left out the info on the QCT increase... When I had that test done, I was taking Actonel. The dr mentioned that with all the meds it takes years to see large increases, but sometimes you can see high spikes in a shorter amount of time. She also mentioned that this process of building new bone is a slow thing that doesn't happen overnight. Of course she didn't mean that literally, but said that one of the things the drug cos don't mention is the amount of time it takes to see the increases that are seen in their studies. Some of the figures are calculated across the limit of a clinical trial which has a specific time frame, but when they mention overall increases in t-scores they leave out a time frame and usually these are seen over several years.
My Forteo t-score results are still good, but I can't count on them being as good as they say. This is just my opinion, not the drs, but she said that increases like mine are not usual, but not unheard of either. Since I have other factors that can under/over estimate the score I'm not saying my results are 100% accurate, but good enough for me, that's for sure. My dr seems to have more faith in the score than I do, but that's okay to. When you look at how variable the dxa is, I have a hard time looking at any score as totally accurate. Since using different scanners, techs, etc can change the results so easily, I don't place all my hope into them. When I had the dxa, the tech almost canceled it, because she couldn't get my spine to line up straight, because of my scoliosis (curvature), and if just that can throw off the results drastically, that gives you an idea of what I'm talking about. In my case the titanium rods/screws and arthritis were also a problem. Metal/arthritis gives you a better score, making the bone look more dense, and scoliosis can make it look much worse-less dense. If you then add the fact that the first 2 scans were QCT's that machine over estimates the score, so try and figure out all of that and come up with a reasonably accurate score. If the tech hadn't been able to get a pic that excluded the metal, and line up mine spine straight, she was going to do a wrist scan instead. In the end she went with the hip and spine, and at least I know that I don't have anything in my hip to interfere with the score, so hopefully that part of the score is closer to 100% accuracy. Can you imagine if the day I had that dxa I got a bad scanner or lousy tech and ended up with a horrible score that wasn't correct, I could have gone down in flames basing my treatment on that, and my dr warned me that she does she dxa scores that are obviously totally wrong or miscalculated, that have to be rerun.
I still feel that at 11 mos yours is a good score. There are others with the same improvement as yours, and they are happy with it, so I guess it just depends on how you look at it, and I bet time will make it look different, after the anticipation wears off.
My mineral met dr said something interesting to me before I had the dxa, and that was how important is this score to you? I really didn't know what to say, so I asked why, and she said she was worried about me pinning "all" my hopes on one t-score and if I was thinking like that she may have waited longer to order the scan, when we might have seen even greater results. I told her it wouldn't change anything that I was doing or dishearten me considerably, but I was very curious about my score since I only had that QCT to go by which isn't the gold standard the dxa is. So you know the rest of the story; I got a good result but with many contributing factors that could alter it's accuracy.
I'm not sure why I went in to all this, except to say that these scores aren't the end all or be all of our treatment. I hope someday the variabilities of these tests can be completely eliminated.
One of the articles I read by your dr was titled, "In Depth Look at How Osteoporosis Treatments Function Within Bone." It was dated Aug 15, 2005 at Medical News Today. Note that this article measured the PINP bone markers, but this test and NTx both measure the cross linked collagen markers. I wish I could find out where Boneman got his info on high NTx, because I just can't find anything to corroborate it, not that it's an inaccurate statement, it's just maddening not being able to confirm it, and it's seems your dr, my dr and I all feel the same way about increased NTx's positive implications.
I think your dr is on the right track with the sequential treatment, so just hang in there till the next test, which I'm sure will be more to your liking.
Last edited by DesertBloom; 09-05-2007 at 07:49 PM.
DesertBloom - I don't know how to thank you for all of that, it was very helpful and a lot to think about. Once again, you have shown the importance of tempering emotion with knowledge.
You certainly have learned alot going through all this and I really appreciate your sharing both your experiences and your research. Your discussion about your conversations with your doc were helpful about the slow process of bone growth and the role of expectations in our treatment. And, your comments about dexa considerations was very enlightening. Me too on some scoliosis.
You must have exhausted yourself with that last message, it was quite long. Thank you again.
Sometime in the future I would love to hear your thoughts about sequential treatment. Wondering if you could give sort of a lay person's take on what the docs are going for when they are pushing the system one way and then the next between forteo and a bisphos.I have to confess, I really have a hard time understanding this. I had done some research awhile back and saw that Dr. Felicia Cosman at Helen Hayes was doing something like 3 or 4 month stints between the two. Of course, the bisphos part of sequential treatment is a big turn off . Actually I guess that is sort of a joke--because bisphos really do turn if off , don't they?
Good night and know that your very active and able mind helped another person alot today.
Last edited by osteoblast; 09-05-2007 at 08:27 PM.
Hi Osteo: I'm glad I could help in some small way, and when you get a chance to read that article, let me know what you think. I'd read another of your drs studies but couldn't find it right now, but basically it was the same subject matter. You're lucky to have such a gifted intelligent dr heading up your medical treatment. BTW, did your dr graduated from the Univ of WA? I was just wondering since the head of the Osteo dept I go to taught there years ago, and maybe they know one another.
Sorry for being so long winded, I just hope it doesn't put a lot of people off!!!
I can get carried away, as if I had to explain that
I sometimes feel I'm just exploding with things I want to share from what I've read, then it dawns on me, maybe my posts are avoided by some for that. But what am I gonna do? I think I'm too old to change now.
Take care of yourself, and if you haven't had a chance to read that article yet, let me know if you need further direction toward it.
Have a good relaxing night. Maybe some guided imagery, or aroma therapy will help soothe your nerves, I know it does mine-lavendar is great for stress and promoting relaxation. I'm still awaiting the Tai Chi video, and hope it will arrive soon. I don't think I can wait much longer, I "really" need it right now with all this dental stuff going on.
Do the thing you fear most, and the death of fear is certain~Mark Twain
DesertBloom-Do not think for a moment that your messages are long winded. They are thoughful and packed with solid information and intelligence.I for one say KEEP IT UP!!!!
The Mark Twain quote is great and totally true.The embrace your fear school of thought is one that I too try to follow. The other option is denial and avoidance, and those approaches seem to cause much more trouble . Sometimes it just takes a bit to summon up the courage. But living the courageous life is to be truly alive. Mark Twain sure was an interesting person!
I don't know about the UW connection but I will look.
I cannot believe you still do not have the tai chi dvd.But I may have another suggestion today that would be a quick get. I purchased a highly rated dvd on Qi Gong over the weekend and am going to try it out today. I purchased the dvd QiGong Beginning Practice with Francesco and Daisy Lee Garripoli from the local Barnes and Noble.It is put out by GAIAM and their dvds seem to be stocked at major outlets unlike the difficult to find Tai chi dvds by Scott Cole. On the two Tai Chi dvds by Scott Cole he includes some QiGong , I wouldn't know the difference between tai chi and qi gong but this is what he says. At Amazon , people rated the Qi Gong dvd highly so I decided to buy it.I still love the Scott Cole dvds alot , this is just to try something a little different to add to what I am already doing. I will let you know later today.
DesertBloom- As I get closer to the bisphos moment,I approach it with much trepidation. We all know why . The doc said basically take whatever bisphos you want . I had taken fosamax for 7 weeks with no prob. So, he said go ahead , and if there is a problem shift to actonel. And he said some people do vice versa actonel to fosamax if a problem. At pubmed, I read research summaries that do indicate that fosamax had greater results than actonel. Yet, the difference doesn't seem huge and with half life considerations( I almost wrote AFTER LIFE considerations -I guess that may be true too UGH!) Anyway, DesertBloom I am feeling rather concerned. I have about 9 days left with the forteo and then must soon proceed.
I believe I know what your leaning is on this but could you share your thought process on this with me??
Last edited by osteoblast; 09-06-2007 at 10:37 AM.
I have posted this a number of times in the past but it might help you to see it. My doctor, who was involved in the clinical trials of Forteo, told me not to have a dexa less than 18 months into the course of treatment with Forteo because I would be discouraged. He told me something like what your doctor told you -- the bone is growing, but it does not mineralize fast enough to show up on the dexa. Anyway, I did not have a dexa until being on Forteo for 20 months and I had an improvement in my spine from -3.5 to -2.3. I was very pleased. My hip improvement was much less, but they were in the -2.4 area to begin with -- not nearly as bad as my spine.
I am now on Actonel and will have another dexa in a few months. I hope to be holding my gains and maybe making new gains.
My doctor also told me that there are spikes in gains with Forteo and that the new thing is doing Forteo for a shorter period to get that spike and then hold it with a bisphosphonate, and then go back to Forteo, etc. etc. So it sounds like that's where your doctor is at.
My doctor offered to keep me on Forteo beyond the two years that I took it, but I decided to see how I'd do on Actonel and know that if I backslide, I can go back on Forteo.
Try not to be discouraged. It seems that it is too soon to have your gains show on the dexa. Best of luck to you in the new course of treatment. My doctor likes Actonel the best of the bisphosphonates, so I'm going with that one. So far, happily, no noticeable side effects.
Spinewhine-It's great to get your message. Yes, now I do recall you saying this before about not to be discouraged too soon. Yet it is good to hear it once again at this time. Thank you.
I seem to recall that you had a pretty rigorous regimen that you were following with exercise and perhaps supplements. Could you go over those aspects again? I would just like to see if perhaps there is something I am overlooking.Also, did you say that you were on any hormones?
Do you recall why your doc had a preference for Actonel? Did you start the Actonel on the day after your last shot? Or did your doc want you to wait a period of time?
You said that you had your dexa 20 months into the treatment, and that you are now getting ready for another dexa soon. How many months is it now since you completed the 24 months on forteo?
Sorry if there are too many questions. I hope it's not a bother. It is just so helpful to hear your experience.
You are so fortunate to have had such an excellent result in your spine. I wish you continued great results! Let us know how it goes.