I know that I have posted here before about making my next treatment decision, but some new questions have been going through my mind. My next step is probably going to be either Fosamax or Actonel(following the 2 yrs on Forteo that I just completed), but I need to resolve a few other concerns first. My vitamin D level started off at 32 when I was diagnosed with osteo in 2004 and for the next 3 years I took 50,000 IU of D twice a month. My levels went up to 41 then 50 over the next two years. But in this last year they started coming down again and most recently in May of 2007 it was back to 32. For the next two months I took the 50,000 IU weekly instead of twice a month and it only changed from 32.4 to 34.0. I don't know why it is not coming up and I am hesitant to start any other therapy if I am not absorbing my D. Also, while I was on Forteo my urine NTX went from 72(before treatment) to 19 after the first year, but then it started going up after that. At 18 months it was 35, at 24 months 65, and then a few months later after I contiuned the forteo at the 26th month it was 91. I am not sure what that means. I have been trying to research on some sites and can't make sense of what that could mean-if anything. If anyone has any ideas or suggestions of where I could go to find some answers I would really appreciate it. I am waiting for my doctor to get back from vacation, but am trying to prepare some questions etc for my next visit. I stopped the forteo 2 weeks ago and am enjoying a drug holiday, yet I know that I only have about a month or so off forteo as far as protection before I decide what to do next. I certainly don't want to start a bisphosphonate if there are other underlying problems that need to be resolved for anything to work. Sorry this is so long-but wanted to be specific enough.
Hi Trail: According to Eli Lily's study on Forteo, vitamin D 25 levels decreased, at the 12 mo mark, by 19% in women from baseline taking Forteo during the length of the study. Vitamin D 125 increased at the 12 mo mark again by 19% in the women. I didn't include the mens levels.
The bonemarkers tests were as follows:
Bone formation markers increased (BSAP) by 45% in women from baseline. Formation markers increased at 1 month and continued to rise more slowly at months 6-12.
Bone resorption markers (NTx) increased by 45% in women from baseline and returned to baseline at the end of the treatment. Resorption markers followed the same path with an increase at 1 month and another increase at months 6-12.
Forteo is the only bone med where you want to see an increase in both bone formation and resorption markers from baseline. If you were taking fosamax, or some other bisphosphonate you would want to see a decrease from baseline in both tests. I'm not sure why your numbers kind of jump around, but this last score is good and what you'd expect to see with Forteo and new bone growth. The other articles I've read said the increases continue through the treatment period and then decline to baseline when you stop taking it. My last NTx was 79, but I like your score better and my dr was happy with it. I never had a baseline test, so I had nothing to compare my score to, but your score looks good if you look at the % increase you want to see.
Look at pages 4 & 5 in the link below on the "Phosphorous & Vit D" and "Effects on markers..." paragraphs.
Good luck with your decision. Evidentally a decrease in D25 on Forteo isn't all that unusual, you just need to raise it, and your NTx is good. Were you taking any other bone drug before the Forteo?
I haven't taken anything for my osteo except forteo so far, I wasn't even on any HRT when I went thru menopause 6 years ago. I forgot to mention my BSAP scores-I would like your feedback on those too if you don't mind.
12/04 15.7 (before forteo)
5/06 12 months on forteo-8.7
11/06 18 months 12.2
5/07 24 months 11.5
8/07 26 months 14.6
Thanks for your help,
Hi again: On these NTx and BSAP scores you are always looking for an increase while on Forteo. Now I can't tell you how much of an increase you want to see except that you do want an increase, and even if it's a small increase that's still an increase.
Do have the reference ranges on these 2 tests? It would help to know what your lab considers normal for your age and meno status. I know what my labs NTx ref range is, but that won't help since they vary so much from lab to lab.
Be sure to read the Lily trials that I posted so you can see that what I wrote was taken from there. You always want to make sure that I don't make a mistake Mistakes or misinterpretations do happen, so please check out those 2 para's.
So your baseline was 15.7 and the last score was 14.6. That's about a one point decrease so I'm not sure what to make of it. What did the dr say? With these tests you have to factor in a error rate on collection and handling, so those 2 scores may not mean much of anything, also even with proper collection, shipping and processing there is commonly a 30% day-to-day variation in these marker tests. Also if I had the ref range I could tell more. BSAP numbers are always lower than NTx, so I'll wait till you can post the reference, before I speculate anymore. My dr doesn't even do the BSAP and only relies on the NTx, but my insurance doesn't pay for the BSAP either, but she feels comfortable with the one test for some reason to give her whatever info she needs.
Your NTx is still great though.
Last edited by DesertBloom; 08-28-2007 at 09:51 AM.
Thanks for getting back so quickly. On all my tests the BSAP was always within the normal reference range. The ranges varied from the two labs-one was 5.7-29.0 and the other is 0-21.3. I will read the paragraphs you suggested.
Again, thanks so much.
Hi Trail- A few weeks ago I received BSAP and NTX test results.I am just about at my one year mark on forteo. My Bsap was not too elevated but NTx really elevated. The doctor said it was within what would be expected on forteo and ntx numbers can really vary throughout the day. Other doctors have told me that the ntx test is subject to errors in handling and so has a reliability issue.Try not to get too stressed out on this. In any event you are at the end of your forteo treatment and you need to follow up with another drug. As DesertBloom said , the forteo info shows that there is a tearing through vit d while on forteo. This happened to me .
Trail, did you have a bone density test at your one year on forteo? Were you showing an improvement at that time? Have you had a bone density test at the two year mark?
I had a bone density at one year and it showed about a 9% improvement in the spine but no change in hip. At 2 years I stayed about the same, no real improvement, but no measured decline. That makes me think that maybe the vitamin d dropping the second year impacted my results. I could be grasping at straws for a reason, but haven't been given a definite answer from my physician.
Trail-Well, I wonder whether your doc will have an opinion about the holding steady on the second year dexa. At least you didn't lose and that is a very good thing indeed. Between fosamax and actonel, which do you think that you will be taking ? These days neither one looks great but what can we do? I mentioned that I had read in a study that forteo treatment was followed by raloxifene(sp?). It was an italian study. I am going to try to do some more research on that topic. Maybe you could ask your doc what he thinks about following with raloxifene.
Trail- since you are just finishing up with the two years forteo, could you let me know did you just do 24 forteo pens or more like 26? The reason I ask is that I am just completing my 12th pen and the one yr. script needs renewal. But I am only on 11 months. This is because the pens are for 28 days. Thus it would take more like 13 pens to complete a calendar year. So , I wonder when they say you can only be on forteo for two years are they saying 24 pens is the limit or the two years??I am wondering about how my insurance will deal with this.
p.s. Congratulations on the 9% increase , that is really great!!!!!
Last edited by osteoblast; 08-28-2007 at 02:28 PM.
I assumed that they meant time(in months) as opposed to number of pens, because as you said it doesn't come out perfectly otherwise. So, I started on June 8,2005 and ended on August 13,2007, with one month off in the middle when I took a holiday to deal with other health stuff. I have read a little about raloxifene and recently went to an osteo conference that talked about it too and for me there are some risks. Some side effects are hot flashes, leg cramps, peripheral edema and deep vein thrombosis. I have a family history of leg thromboflebitis and have a tendency myself to have some edema in my legs, plus peripheral neuropathy in my feet, so I don't think I would choose that. But, I will talk to my doc about it. At this point both my docs are saying Fosamax and they said if I wanted to take the 35mg dose instead of the 70 that would be okay. I need to discuss some of the differences between Fosamax and Actonel, such as half-life, etc with them, but I know they feel that Fosamax has been out longer and has better research study data behind it. So, we'll see. I am not jumping for joy over my choices right now, but I don't want to lose everything I gained with Forteo and feel as crappy as I did three years ago before starting treatment. I guess for now we all have to make the best decisions for ourselves and hope for the best outcome. Thanks for your encouraging words.
Trail-I am pretty focused now on what to do after my 12 months or 12 pens on forteo because , I believe my doctor is going to say stop at that point and be on a bishphos and then back to forteo at some point in the future.So, we are sharing the same decisions now. I am having another ntx and bsap test this week and then the doc will look at the results together with a dexa that I will have shortly. I am glad you raised the point about fosamax and its two doses 35 and 70mg. I guess the question becomes what amount is necessary to lock in any gains.I don't even know if I have any gains but, that is the question isn't it. What is the dose that will lock in gains? Do you have any idea from either your docs or going to the conference that you went to about whether it is possible that the 35mg could do the job?Or perhaps start with the larger dose to be sure the lock in happens and then reduce to the smaller dose?
Also I was wondering whether sequential therapy was discussed at the conference that you went to. That is pth followed by bisphos. followed by pth followed by bisphos.
It's great to be able to share on these issues. It really helps. Thank you.
Thanks for your response. It is good to talk to someone who is in your same place. I am in the process of switching from one doc to another, which is why I am having two voices about my treatment and not just one. Their views are not drastically different, and the main reason I am switching is because I moved about a year into my diagnosis(about an hour away) and I have continued with my original doctor for the duration of my forteo treatment. But now I would like to avoid the hour drive and go to an endocrinologist at Stanford who specializes in osteo and is involved and up on the latest research too. So, my new doc is the one who mentioned the very same treatment you mentioned-intermittant PTH and bishphos. He said if he had seen me first that is what he would have done with me, 3 months on and then 3 months off. He claims it is the better approach. There is no point in my ruminating over what WOULD have been, because honestly I don't know if my results would have been different. Also, both docs said they had no problem with me starting the Fosamax at 35mg, but I didn't ask them what they thought the difference was-but I will do that and let you know. Did your doc tell you how long your protection from forteo would last before you had to do the bisphosphonate? My original doc said about a month and I plan to ask my new one the same question and see what he says.
Trail-It is great to share with someone who is at basically the same decision point as I am.
I too am in doc transition. I started seeing my new doc when I was at about 10 months on forteo. About 6wks ago. His thinking as far as I can gather is that at one year I would stop, take a bisphos for a period and then back to forteo.He didn't say that he wanted me to stop right then, nor did he say he likes to do 3mo forteo, then bisphos , then forteo. He didn't specificy exact time frames at that first appt. Nor did he say what period if any would elapse between the forteo trmt and the bisphos.Our next appt. was just scheduled for what would be 12 months on forteo. But, recently when I had a ntx that was way high he said you could just stop now , but he did say that he thought the ntx was consistent with forteo trtmt. My impression was that he said I could stop now was because I was obviously concerned and more importantly we were so close to the 12 months on forteo anyway. I probably should have just said ok at that time. I really don't know why I didn't,I just wasn't prepared so to speak . Anyway,he said we could re-do the ntx, and bsap and then see. So, I should have results in a day or so.
I am ready to stop now. I do not feel that my d level adequately supported the project. I don't really feel like going into the vit d details now , but I am not going to let that happen again.When I stop the forteo, I would want to start next day on the bisphos. But, I will see what the doc recommends.Your impression seems to be that the docs are preferring the fosamax, right?
Your info about the lower dose fosamax has been very helpful to me.
That is interesting that the Stanford doc spoke of the intermittent (very short term) forteo/bispho trtmt. Quitting at completion of 11 months would give me some flexibility regarding intermittent trtmt.Did they talk about intermittent or sequential therapy at the conference that you attended? If so, what time frames were under discussion?
Did your new doc give you the impression that your trtmt. will evolve. That is, that the fosamax is just for now and that likely there will be something soon? I am hoping that denosumab may hold promise but only time will tell.
I'll post as things develop on this end. I hope to hear what you learn. Take care