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Old 01-07-2008, 05:23 PM   #1
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Thoughts on Stopping Forteo and What to Expect

Several months back, I had posted that at one year I may stop forteo and start a bisphos. I continued on the forteo for an additional few months and I am now reconsidering the stopping of forteo , and revisiting the remaining 9 months I have of forteo after a year on Actonel.
Any comments on the approach would be welcome. And, yes, I know the arguments against bisphos. but don't see a great alternative right now.
Also, I am wondering if anyone has thoughts about what it does to your body to stop the forteo, as it lowered my PTH ( and this is consistent with the drug co. info). I am wondering if the stopping would then cause a period of low PTH before our bodies reinstate the usual balance. My body already seems so out of balance- I am hypothyroid ( being treated), so I am quite concerned about how the coming off of forteo will affect me.
I am throwing this topic out there now , and will see my doctor in a week to decide on the course of treatment. I just wondered if anyone had any thoughts about this , or could share their coming off forteo experience.

Last edited by osteoblast; 01-07-2008 at 05:24 PM.

 
Old 01-08-2008, 07:05 PM   #2
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Re: Thoughts on Stopping Forteo and What to Expect

Hi Osteoblast,

Wondering why you've decided to stop the Forteo after 1 year? I've only done 4 nights of the stuff, had nasty side effects and am now deliberating whether to start again or just stay on Fosamax.

From what I've read and heard from a few doctors, you need the full 2 years to get the bone benefits from Forteo. Some women apparently don't even show any evidence of progress in 1 year.

Good luck!
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Old 01-08-2008, 07:21 PM   #3
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Re: Thoughts on Stopping Forteo and What to Expect

Hi Osteo... Boy have you asked a tough question!! Before I can give you my thoughts I wondered if you could say why you've decided to reconsider it? The last time we talked about this it sounded like you were against the idea, so I'm wondering if something has changed to make you think about it again.

I'm sure you've done more reading on this particular subject than I, but I've been going through the database at JBMR trying to find something that would substantiate the cyclic/intermittent admin of Forteo, but I haven't found anything yet that seems similar to your situation.

Maybe you could point me in some direction on this, with the info you have? The articles I read today on cyclic admin of PTH was for 3 mos on 3 mos off or 1 week on 1 week off which don't seem to describe your situation, since the majority of those were done to reduce the cost of therapy on Forteo. However, on those, they all said about the same thing and that was that cyclic admin had the same results at the end of therapy as those of non stop Forteo admin.

I'm still looking for something eye opening, so if I find that I'll certainly let you know when I do. I don't want to just give you an off the cuff answer, since it's such a important question.

I've never considered a year on forteo and a year on bisphos's as intermittent or cyclic admin, so maybe that's my problem.

 
Old 01-09-2008, 05:28 AM   #4
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Re: Thoughts on Stopping Forteo and What to Expect

DesertBloom, can you talk a little bit more about the Forteo cyclic admin results vs ongoing? so there's no difference in results and either way will still produce bone growth? Is there research we can read more about this?
Thanks!
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Old 01-09-2008, 03:18 PM   #5
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Re: Thoughts on Stopping Forteo and What to Expect

Hi Osteo: I found an article that may be of interest to you, but it is long!!! You may be able to skip through some of the beginning of this article because it explains the history of PTH 1-34 at it's inception in 1980, and how they proceeded with it from there with all the trials, training, prohibitions, etc. I couldn't possibly began to explain all that it entails, but it does seem to suggest that greater increases in bmd are seen with sequential treatment of PTH and Alendronate. I realize you're thinking about Risedronate (Actonel) but I would imagine there isn't much difference between the two.

[url]http://www.jbmronline.org/doi/pdf/10.1359/JBMR.051023[/url]

It covers many other important topics so I suggest reading the whole article when you have the time.

When I went off Forteo (for one mo) I didn't have "any" noticeable side effects. I can't find the info you mentioned about Forteo lowering PTH, so I'm not quite sure what to say about that. Do you notice any particular symptoms between the 6th to 10th hour post dose? Since this is the time that Forteo leaves you body, I wondered if you ever noticed anything at that time that would be similar to stopping it. The only other thing I could think of is that whatever symptoms you have now, that are contributable to Forteo, would go away.

I know that Forteo increases PTH in patients with "hypoparathyroidism" but that's the only mention I noticed. It seems since you have so many other things going on that they could contribute to your overall health. Do you think your thyroid probs might be the main contributor to any or all ill feelings/symptoms you have at the moment?

Let me know if you have any questions on this, and notice page 361 first para and last para. There's also a ton of other articles that may be of interest to you on this topic in the bibliography-especially the Cosman entries from the ASBMR.

BoomerBones: I would recommend this article to you as well since it mentions the cyclic admin of Forteo in various increments like I mentioned: 3 mos on Forteo 3 mos on a bisphos-or-1 week Forteo and 1 week bisphos. See if this helps you too. Boomer if this article isn't exactly what you want, look for something at the library that mentions "cyclic" or "intermittent" administration of Forteo with Bisphosphonates or some other type of med like SERMS, HRT etc. What Osteo is considering is called sequential admin with Forteo and Bisphosphonates.

Good Luck to you both!!!!!

Last edited by DesertBloom; 01-09-2008 at 03:37 PM.

 
Old 01-09-2008, 04:14 PM   #6
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Re: Thoughts on Stopping Forteo and What to Expect

Boomerbones, I'm interested in what your nasty side effects were. I started Forteo in June and around Christmas I stopped because of the leg/foot cramps and awful sweating (I don't normally sweat). Things got immediately better.

I just started it again and the cramps and sweating returned. I decided today I'm going to stop for good.

I'd called my endo and asked her if I could stop and she said she wanted me to stay on the Forteo because it's the strongest thing there is for osteo.

My hypothyroid puts out zero.

Thanks!
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Old 01-09-2008, 04:27 PM   #7
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Re: Thoughts on Stopping Forteo and What to Expect

Quote:
Originally Posted by BoomerBones View Post
From what I've read and heard from a few doctors, you need the full 2 years to get the bone benefits from Forteo. Some women apparently don't even show any evidence of progress in 1 year.

Good luck!
Hi Boomer: You are absolutely correct in your statement, but some patients see gains earlier than 2 years and many others don't see "any" until the end of treatment. Forteo also continues to work, for some, up to 18 mos after you stop it, but for some they loose their gains right after stopping-unfortunately we all react to this stuff differently.

What type of side effects are you having? I will finish my 2 yrs on Forteo at the end of June so I'm close to the that and haven't had any side effects, except for "slightly elevated" ionized cal, which I probably already told you.

When I went into this treatment I had already tried Actenol (15 mos), and the Dr didn't think my .2 increase was great enough and put me on Forteo. I knew about the contraindications on it, but I "purposely" didn't read about any of the side effects. This is something I do with most meds, because, "for me" I know my brain has the ability to manufacture effects that aren't considered true side effects. Also, like assencn12 (sorry for the spelling) said the power of positive thinking is extremely important. Since this was my last shot, so to speak, at a osteo med, I decided from the beginning, that this hormone was going to work for me and that I wouldn't have any trouble with it, and that's exactly what happened. I've seen incredible increases in bmd, over 1 SD point and NO side effects. Now I'm not saying that there aren't any side effects, because there are but I didn't experience them. When ever they list side effects they have to include "every" type that was reported in the clinical trial no matter how obscure they might be or whether they were caused by "something else" or not, so I try not to read the package insert on side effects until I've taken the med for at least 30 days. I do check the contraindications, because if I didn't that would be just fool hardy...I have serious heart, eye, and blood conditions so I always have to check that the med won't make those worse.

There used to be quite a few posters here with Forteo side effects, and a lot with none, but we haven't heard from them in a while, so that's why I'm curious about yours, and wondering if they are similar to what we've already heard, or if they are new ones we haven't heard of even on the package insert. So if you don't mind, could you tell us what they are, and are you taking anything else for med probs, which could tell us a lot.

I hope your situation is resolved soon, and if we can help in any way just ask. Sometimes just talking back and forth can pull up some interesting solutions to peoples probs. I don't remember, but where you the one that said you took Fosamax for a long time and you t-score went down? I can't recall if that was you. If it was I don't know what continuing on that would accomplish, but who knows we are all "completely" different in how we react to things and maybe you are just a slow responder in bone remodeling, also taking fosamax in combo with forteo "could" work much better.

I wish I could take your Forteo symptoms away, but Darn, I don't have that much power-wish I did though


Good Luck and maybe the cyclic approach might help you. There's no reason why you couldn't choose between any of them that I can think of. You could try the 1 day on/off, or 1 week on/off or the 3 mos on/off, maybe that would be easier on your body; when I say "off" that means you would take some other med during that time frame. I've also heard of taking a lesser dose, but I don't know exactly how that works. From what I recall it entailed taking Forteo only 2-3 times a week and nothing else, but your Dr would have to approve that. I believe I read about that at the JBMR journal database which you can access free-no registration or cost, and they are considered the best by many in Bone and Mineral Research.

Last edited by DesertBloom; 01-09-2008 at 04:35 PM.

 
Old 01-09-2008, 04:42 PM   #8
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Re: Thoughts on Stopping Forteo and What to Expect

DesertBloom-Thank you for the reference to the article. It started to ******** , first page came in and then it said I/O failure and everything just stopped. I'll try again. You are right it is a long article. What I am wondering is whether the reference to sequential therapy that you mentioned just concerns the alendronate following the teriparatide ? I have read a NEJM article about that previously and the results were impressive. It was a 2005 article"One Year of Alendronate After One Year of Parathyroid Hormone (1-84)" I realize the 1-84 is not the forteo. Was the reference in the article you mentioned just concerning following teriparatide with alendronate or then going back on another year of teriparatide?
The reference to the lowering of pth on forteo can be found by looking at ---teriparatide hypercalcemia. It will probably be the first article you see. It states what Dr. Licata found with forteo----significant increase in 1,25 d, decrease in pth and increase in calcium.This stuff is very complex!
My reconsidering about forteo is based on a feeling of exhaustion/frustration/fear with this project. If I could know forteo was helping me- but, with nothing showing on dexa -I don't know if there is anything positive happening. And, I hope nothing negative is happening- I think that is my worry now.
Next week I see the rheum. I just had blood drawn yesterday and pth and serum cal tested along with thyroid stuff and vit d. Perhaps she will order more tests when I see her.
So, my question about people going off of forteo and wondering how they felt, was centered on the lowering of pth and wondering about when that would normalize. I can't really say how I feel 6-8 hours after the injection because usually I am sleeping.

Last edited by osteoblast; 01-09-2008 at 04:50 PM.

 
Old 01-09-2008, 05:41 PM   #9
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Re: Thoughts on Stopping Forteo and What to Expect

Quote:
Originally Posted by osteoblast View Post
What I am wondering is whether the reference to sequential therapy that you mentioned just concerns the alendronate following the teriparatide ?
It mentions both, and all other combo's you can think of...


Quote:
Originally Posted by osteoblast View Post
So, my question about people going off of forteo and wondering how they felt, was centered on the lowering of pth and wondering about when that would normalize.

I can't answer that question since my PTH was always normal, and I don't know what it feels like to be low.

Try opening the article again, it just opens a PDF file, so hopefully you have that program. If you didn't have it it wouldn't have opened at all, so just try again and again If you can't get it, I'll try to break it down for you but it's sooo long I think it's 12 pages, but very very interesting on many levels.

I still wouldn't think you would have any noticeable side effects coming off of Forteo, but who knows for sure.

Good Luck with all of this, but it does sound very promising for you.

Last edited by DesertBloom; 01-11-2008 at 07:53 PM.

 
Old 01-09-2008, 05:55 PM   #10
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Re: Thoughts on Stopping Forteo and What to Expect

DesertBloom- I will try again tonight with the article. At the end of your message you said "it does sound very promising" I am not sure what you are referring to.....was it the section in the article about sequential???

 
Old 01-09-2008, 06:49 PM   #11
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Re: Thoughts on Stopping Forteo and What to Expect

Hi Osteo: I have another question... How low is your PTH? When I said I never had low PTH, I have had several readings that was the lowest number in the range, but both Drs consider that normal, just like they do with cal.

When reading your symptoms, it really sounds like thyroid side effects, is your thyroid level really low right now? I can't remember the ref range on PTH, but what you describe "sounds" like low thyroid and you haven't said anything about it recently, or if you did I forgot about it, since we don't talk about thyroid levels that much.

Anyway, I just wondered about the PTH reading and wondered if you ask the Endo or anyone else if there would be effects coming off of Forteo?

Let me know when you have time...

 
Old 01-10-2008, 06:45 AM   #12
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Re: Thoughts on Stopping Forteo and What to Expect

OsteoBlast, DesertBloom & Paperbkrtr - Some great conversations going back and forth on this topic and also some excellent questions.

To answer the questions about my experience you had asked: I had only 4 days on the drug and then my dr pulled me off because of the side effects: increasingly bad headaches, dizziness but not the kind of lightheadedness others have talked about - this is full-fledged dizzy where the room is spinning. Symptoms don't abate until almost 24 hours after I inject. I tried injecting right before bedtime, and then 1-2 hours before bedtime. No way I could function during the day like this and sadly it started to affect my daytime ability to drive, etc.
I've made the decision to try it again - but on an on/off schedule which I guess I will have to experiment with to determine what's the right frequency. My dr is deadset against me doing both Forteo and a bisphos simultaneously. right now I'm back on the Fosamax just to have some "coverage" but I'm not sure that's a good idea either. My dr is a rheum and knowledgeable to a point. My concern, like yours, is what does going on, off, taking other drugs in the middle of and with Forteo do to the positive bonebuilding effects of Forteo? And does it even make any sense to do this?

Thanks to all of you for your excellent advice, concern and commentary. I have become an avid fan of this board and, quite frankly, I put my stock in what you all have to say than the drs who really continue to change their minds about what is/isn't the right course of action.
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Old 01-10-2008, 11:12 AM   #13
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Re: Thoughts on Stopping Forteo and What to Expect

Hi Boomer: Now I know what you are dealing with... If I was getting that dizzy, I couldn't take Forteo, especially if it's effecting your ability to drive.

My Dr believes that you can't take Forteo with a BP's. She is one of those who truly believes that a antiresorptive (fosamax) taken with an anabolic (forteo) doesn't work because the antiresorptive will diminish the effects of the forteo, so I can see why your Dr is reacting the way he is.

I can't tell you what to do, I can only direct you to these studies and then you and your Dr would have to decide. Which cyclic admin did you choose?

I hope this works, but am wondering if your insurance co is going to say something about paying for both meds simultaneously. Are you taking any other meds that would make you dizzy? If not you have a tough choice to make, and I wish you success, because if I was in your shoes I truly don't know what I would do other than possibly give up the forteo.

Good Luck, just wanted to add my Drs 2 cents on this, but in the end you will have to decide after you've done all the research you can.


 
Old 01-10-2008, 01:23 PM   #14
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Re: Thoughts on Stopping Forteo and What to Expect

DesertBloom-I am waiting on some tests now, when I get those results I will update you about pth etc.Thanks for recommending the article- I was able to get it later in the day. While all the various ways of taking forteo was interesting, I don't feel that I have any greater clarity or reason to make a decision one way or the other. Also, I found it interesting how while on forteo you would lose bmd in an area in the hip and then later get it back . Did you notice that section as well? And finally, did you check that news article with Licata's statement about the pth decreasing and the 1,25 d &serum calc increasing?
p.s.-in the geez louise category did you see the section in the article about the forteo pen dispensing the whole pen at one time???? I sure hope that whatever caused that has been worked out!!!!!!!

Last edited by osteoblast; 01-10-2008 at 01:52 PM.

 
Old 01-10-2008, 01:41 PM   #15
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Re: Thoughts on Stopping Forteo and What to Expect

BoomerBones- I too am wondering about your reaction to forteo. While I had dizziness when I did the shot in the afternoon, taking the shot before bed dealt with the problem-mostly - because I would sleep through it. I know you said that the shot before bed did not help. What I am wondering is whether you may be going hypercalcemic with the forteo. Hypercalcemia is an issue that can occur. And, I suppose in some people it could be alot worse than in others. Did you ever have you serum calcium tested after you started on the forteo??
What I have read is that generally the hypercalcemia with forteo can be dealt with by decreasing calcium supplements , decreasing vit d supplements, and perhaps decreasing dosage a bit. Anyway, I would think that perhaps you could talk to your doctor and check this out.
And one other ray of hope, maybe there will be another alternative drug out soon that will work better for you. I have read that Amgen is working on a drug called denosumab, and in fact is already using it with cancer patients and getting good results. In one place I read that it may be on the market late 2008 but it was not an official statement from the co. -so it could be wrong. Also, if the drug trials do not go well-then maybe it will not be on the market at all. Hopefully, all will go well and there will be another option soon.

 
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