Just started taking Fotero

Hey Friends,
I just started taking Forteo on Monday. I was nervous as all get out (fearing side effects, giving myself shots). Well phew, all I can say is, "It's been a breeze!" Giving myself shots is not a pleasant image in my mind, but they really don't hurt. Today, a little of the medication kind of beaded up on my thigh when I removed the tiny needle, but with practice, I'll do much better.
Then, the idea of some of the side effects I had been reading about left me anticipating a horrible "body breakdown", but nothing happened. I was tired the first and second day, but I've remedied this by changing my shot time to before bedtime.
The most agonizing thing for me had been the waiting for the treatment of osteoporosis. This included the (no longer) intense fear of breaking bones if I sneezed, coughed, or walked too hard.
I am very appreciative of all the positive replies I received to my fear-laden entries to the NEO site.
Some of the replies seem to have come from people with quite a bit of knowledge about osteoporosis and its treatment. I'm curious... Does anyone know the percentage of people that have negative side effects from Forteo?
I am aware of the research that shows rats getting cancer from Forteo. However, the research reveals the cancer occurs after more than two years of the medication. This is why prescriptions of longer than two years are not allowed. Well, I'll update my experiences from time to time. This may be helpful to some.
MaggieSam

By HSB
Posted July 4, 2008 at 1:41 pm

Hi Maggie,

That's good news! I'm curious as to what your numbers are and if you've fractured. I was diagnosed 5 years ago. I took fosamax but it didn't really do anything. I'm apprehensive about taking the forteo.
Thanks,
Helene

By windblown
Posted July 4, 2008 at 4:47 pm

Hi HSB: I hope you don't mind me jumping in here, but if you are considering Forteo, do as much reading and talking to those of us who've taken it. You have to make a decision you can live with.

I can only tell people my experience and then let them make their own informed decision.

I took Actonel, for a little over a year and only improved by 2/10ths of a point. To me that didn't seem like much, but it's still an improvement. The main reason I switched to Forteo was my t-scores were still very low on Actonel, and I had some side effects I couldn't live with. I've had 6 spinal frax's and 7 spinal surgeries, and I didn't want to face that again.

Forteo worked well, for me, and now I'm on Evista after completing the 2 years on Forteo. The shot is really simple and doesn't hurt. The needle is so small that it can't be compared to the regular needles you are probably thinking of. The needle is the size of a eye lash and not much thicker.

If you haven't read the links above, please do so, and any others you can find to help you with your decision.

Good Luck and I hope you find a good treatment.

By windblown
Posted July 4, 2008 at 8:11 pm

Hi Maggie Sam: I'm so glad you aren't having any trouble with the injections. I finished forteo a couple of weeks a go, and didn't have any side effects, as I'm sure I already told you. Went from a -3.6 (spine) to -0.9.

The Eli Lily paper on Forteo has a list of side effects and the percentage of the group that experienced them. Notice that the placebo group numbers are pretty close, in some cases, to the Forteo group, so it just goes to show you can have the same effect whether you're taking the drug or not.

Forteo comes with 2 different size needles which one are you using? I found that when I used the 3/16th one it leak at the injection site. When I switched to the 5/16th needle the leaking stopped.

In the clinical trial, when the rats were given the human dose of 20 mcgs, none of the rats contracted cancer. The rats only got osteosarcoma when they were given up to 60 times the human dose over their lifetime . In the group of rats that didn't get cancer, they used full grown rats not young ones, and most importantly they gave them the human dose of 20 mcgs instead of 60 times that. I believe the paragraph on this is on page 594 in the Cleveland Clinic PDF. It's so important to get All the facts instead of just one, that is very misleading.

Good Luck...

http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20osteosarc oma%22

The PDF below from Eli Lily has the instances of side effects and the stats for each.

http://pi.lilly.com/us/forteo-pi.pdf

By QuiltArtist
Posted July 5, 2008 at 3:51 am

Hey Maggie,
I started Forteo last October. I have loved it. I dread the day I get off of the shots. From day one, I have felt better. This is our one big chance of building our bones. We can get on the other things later. My number was a -5 in my lower back and my femar bones. So I am desperaty to heal. I fell nearly two years ago and went through fosamax and other things before I finally got a doctor that knew something about osteoporosis. If your numbers are low, you are doing the best thing for yourself. The first thing your shots will do is heal your fractures as it builds bone. So as you get fractures, and you get them everyday, the shots are healing them. You need that to get better. Do not miss a single shot. I take my shots at night too.

Good luck to you,
Trish

By Maggie_Sam
Posted July 5, 2008 at 12:30 pm

Hi HSB, QuiltArtist, windblown,
My bone density number in my spine is -4.09. I have not had any fractures (that I know of...) I think for me the psychological aspect of knowing I am slowly improving my bone density count is very helpful. I had aches in my lower back that were very frightening. However, they stopped once I changed the way I slept. After my osteoporosis diagnosis, I started sleeping with a pillow under my legs thinking that would straighten my spine. I stopped that, returned to my normal sleep position, and the aches stopped.

Exercise is a medical treatment that has and continues to be beneficial for me. I think staying fit has had a hand in keeping me fracture free (as I know of). It is a mind relaxer too.

I have been reading, reading, reading about the different medications and side affects. I too switched to a better informed doctor who believes the more I know about this whole diagnosis and treatment, the better my decisions will be about my treatment choices.

If I venture here with any advice, it would be get a doctor who is able and willing to educate herself and patient (blood tests, available treatment options, patient history, etc..). Get a doctor who is willing/able to give information, and time for patient concerns and questions. Partake of the most intense exercise your body can safely handle.

I once again thank you my friends for the information updates in your replies.
MaggieSam

By Alli
Posted July 6, 2008 at 8:05 am

Hi Windblown i am interested in knowing how u r doing on Evista.. How long are you taking it? and any side effects? My doc recommended it to me but i am still hestitant as some poeple have really bad side effects..

By windblown
Posted July 6, 2008 at 12:01 pm

Hi Alli: I've only been on Evista since June 7, so I won't get anymore tests regarding bmd until I have my 24 hr urine NTx done in August. At that time I'll find out how the Evista is working on my bones.

I haven't had any side effects so far on Evista. I have no clue how long I'll take it... I'm hoping that maybe a new med will come along, but who knows. :)

Good luck...

By Alli
Posted July 6, 2008 at 2:01 pm

No annoying hot flashes wind blown that is wonderful. I may consider it ..like the old saying .. you never know until you try. I am just gathering all the info I can get thanks

By HSB
Posted July 7, 2008 at 6:20 pm

Hi ...everyone!
Thanks for the info. My numbers are -2.5 in both hips. I have not fractured. I took Fosamax with minor improvement, for 5 years. I stopped for a year and got worse in 1 of my hips. i excerise regularly and actually lift fairly heavy weights. I have an excellent endo. However, she comes from the point of view that low BMD is only one factor and that fracture is the real determiner of osteoporosis. Unfortunately, that is easier to hear then to believe, especially when your BMD comes back with a diagnosis of OSTEOPORSIS, and when you are constantly seeing relatively young, healthy women on the TV discussing how they are treating osteoporosis. I've also been reading a lot and was very concerned by some of the potential long term effects of the BP's. For instance, if bone growth is stimulated by bone breakdown, then are we just not making any new bone? Anyway,, long story, not so short, I started thinking about Forteo. If I'm going to take something, it might as well be something that is building bone. But, if I in fact have strong but not very dense bone, maybe I should leave well enough alone. Thanks for listening. The support is really appreciated. Always like to hear everyone's thoughts.

Helene

By windblown
Posted July 7, 2008 at 6:42 pm

Hi Alli: I just wanted to mention that I do have hot flashes and night sweats, but I've had those for years. I tried taking HRT, for about a year, and it really helped with those 2 things, but the HRT lower my NTx score, and I wasn't encouraged by that.

So yes I have the annoying hot flashes/night drenching, but it hasn't gotten any worse while I've been on Evista.

Evista works very slowly, and isn't considered a first line of defense for osteo, so keep that in mind if you are trying to increase your bmd. I got a tremendous improvement from Forteo, and I'm taking Evista with the hope it will *maintain* my bmd. If it doesn't I'll have to reconsider it, and right now I have no idea what other options I might consider. I also have breast and ovarian cysts that are benign, so I'm also hoping Evista will help to *prevent* them from turning into malignant ones. I have a lot of cancer, heart, and osteo in the family, so I have to consider all these things.

In the package insert, on Evista, it says you have to stop taking Evista if you plan on flying or having surgery where you will be in bed for an extended period. You could have problems with clots, while taking this, *if* you have to sit for a long time or stay in bed. I just make sure that I walk some every hour, because sitting is bad for me and a lot of others. Our spine doesn't do well with it. I've never had a blood clot, but I do have a bleeding disorder, but it's the type where you bleed a lot with surgeries/menses/cuts. My problem is in my platelets, I have plenty of them they just don't work right to clot my blood, so I've had many transfusions.

You can read about the precautions and benefits at the link below. You've probably already done this, but just in case you can check what I said about the flying, and being in bed for long periods and the risk that those things *might* cause. Remember on all side effects they have to list all possible ones, regardless of how rare they are. Generally I don't get many side effects, so I guess I'm just lucky. I would think the clotting factor is minimal, but necessary to know.

Good Luck to you, and I hope it helps...

http://www.evista.com/pat/index.jsp

By windblown
Posted July 7, 2008 at 6:56 pm

Hi QuitArtist: I'm glad you are doing so well on Forteo... I had a similar reaction to it, and if anyone would let me take it longer than 2 years, I *would* do it, but alas no one would let me. When I finished Forteo I felt a little down, because it somehow gave me a feeling of hope and like something was finally working after trying many other things that didn't work. I've had 6 frax's and 7 spinal fusion with hardware, and I would have done almost anything to prevent having to go through another one of those.

What I wanted to ask you is have you had the 2 or 24 hour urine NTx test done yet. It's mentioned in both the Eli Lily and Cleveland Clinic paper I posted to use for checking on how the drug is working. It's a really simple urine test, and if you need anymore info on it, I have it posted in my fav links section of my web space here at the NOF. If Forteo is working, your NTx score will go up meaning you are making new bone in the resorptive cavities where you've lost it. Dr.'s use this test for other drugs as well, because some of us just can't wait the 2 years, some insurances require, between doing a dxa.

Read about this test in those papers if you haven't already, and you can also read the Medscape article in my fav links that explains what you should expect to see-in the way of numbers-while taking Forteo. You have to register to read the Medscape paper, but it's free and really simple to do. The article is worth the time it takes to register. There are plenty of other medical articles that will be available to you once you register. They have plenty of research papers, and info on drug trials. If you have any questions don't hesitate to ask. To get to my fav links just click on my screen name, and once at the page scroll to the bottom to the Favorite Links section and look for the Medscape article on bone marker tests.

The NTx test in the links above are under the para on collagen cross link tests.

Good luck...

By windblown
Posted July 7, 2008 at 6:59 pm

Hi QuiltArtist: I forgot to mention that my insurance pays for the 2 or 24 hour urine NTx 3 times in the first year and then 2 times in the second year on Forteo. Most insurances pay for it, because it's cheaper than a dxa, but "it's not a replacement" for a dxa, because it doesn't give you a t-score, it just gives you a collagen reading which will tell you if the Forteo is working properly.

By Nita
Posted July 8, 2008 at 11:21 pm

I took Fosamax for 7 years and nothing changed much. I didn't get worse, but the improvement seemed minor. Then I was put on Forteo. I just completed the two years (it is only two years as you reach the maximum benefit in that amount of time) and I am thrilled to find out today in my bone density test that I have moved into the osteopenia category in all bones (spine, femur, and radius). I had no problems with Forteo whatsoever. Giving myself the shots was a little nerve-racking for a couple of days and then I got the hang of it. I'm just pleased I was one of the lucky ones it helped. Now I have to go back to Fosamax for maintenance. Fosamax kept me from becoming worse. Meanwhile, I do yoga and lift weights at least 3 times a week. By the way..........I'm 64.

By Raven1
Posted July 19, 2008 at 8:16 pm

I just took my 2nd n-telepeptide test on Thursday and I'll find out soon if my numbers are up after being on forteo for 9 months. The injections are easy, much to my surprise, and I take them at night. I'll let you all know how i'm doing as soon as I find out. I've been developing my back stroke and my side strokes. Incidentally, I found out I fractured when I took an MRI for another reason entirely. I knew about a hip and pelvis fracture that happened 15 years ago from a fall, but I didn't know I had any spinal fx until the mri. They didn't/don't cause me pain ( except doing the side stroke on my right, that scissor kick is tough,

By Donbeth
Posted July 20, 2008 at 8:37 am

My mom took Forteo for about 6 months and then stopped. She was just not happy taking the meds.
Her Endo has recommended she try it again now.

She has contacted many pharmacys and pricing is $900+ per month.

Can anyone share how to find the best price? She is covered by medicare, but will hit the donut after two months

Sorry for the hijack!

By sdivas
Posted July 20, 2008 at 11:56 am

Hi, this may be a long shot, but check www.needymeds.com. Click F and scroll to Forteo. If your mother doesn't come under the requirements, it may be worth the effort to ask the company for other leads. Hope this helps.

By QuiltArtist
Posted August 30, 2008 at 10:13 am

Hey Windblown,
I dont want to alarm you. But I just had my first dexa scan since I started my Forteo. I think me and you need to keep in touch with the other person who finished her shots and see what else she took. It all plays together. The shots can't do their job without calcium, vitamin D and what ever else you can come up with.

I started my shots last October, 07 and from then until now (August 08) my t-scores did not change. I have 14 months left and I am going to give it the biggest fight of my life. I only missed one shot and that was because of a family thing going down with everyone upset. Me being the Mom, grandmother, wife, was the one worrying about everyone else and I forgot my shot that night. I will not let that happen again if I can help it.

Anyway, I am with you on the shots, a little ahead. But to let you see how hard it is to move up even with the shots, it is still very serious. So here I go again, I have a goal of 14 months to fight this thing as hard as I can.

I hope you get some good results. Keep me in your thoughts and I will keep you in mine too! Fight it with all you have!

By windblown
Posted August 30, 2008 at 8:43 pm

Hi QuiltArtist: I finished my 2 years on Forteo and did really well, I went from -3.6 to normal bmd in the spine and osteopenia in the hip.

I'm now on Evista, and don't think I'm having any trouble with it. I do have hot flashes/night sweats but I had those long before I started Evista. I have had some heart probs, but I don't think they are related to Evista. I also take Lodine, occassionally, and there are some contraindications with that and your heart, since it's an NSAID that's very similar to Celebrex.

I did take Ca and Vit D (1,000 IU's) until I found out I had hypercalcemia, so I had to stop taking both the Ca and D. I have an unusual situation where my D 1,25 and Ca is high and my D 25 is low. When I take Ca or D my Ca goes up along with my D 1,25 and D 25 drops, so I must be from some other planet :). For this reason I'm not taking either of those supplements. People that don't have my mineral metabolism prob need to take Calcium, D3, etc. There are other bone supplements you can take like magnesium, vit K, manganese and phosphorous. Check with your Dr about the supplements you should take with Forteo. They should also check your Ca levels, both blood and urine to see how you metabolize it.

Good luck...

By hofffazio
Posted September 2, 2008 at 12:35 am

Please explain what you mean by leaking? It didn't go into the skin? It seems such a waste of expensive product to me when you have to tap it to get the bubbles out (there never are any) then push in the plunger and expensive product just goes in the air - does the larger needle hurt? I don't think my 3/16" needles are leaking - odd

By nobonesaboutit
Posted September 2, 2008 at 7:30 am

Sometimes the med may leak out of the skin right after injection. Sometimes it may be due to the fact you may be squeezing the skin up too hard to give the med. Who knows-otherwise it could be due to harder tissue? I noticed this happening occasionally as a nurse giving lots of shots over the years-even with bigger , longer needles that were intramuscular injections. For some meds, there were recommendations to give them in a certain way that hopefully would prevent leakage like iron injections that would leave big ugly stains on the skin. That method is not appropriate for this type (subcutaneous) injections. It ticked me off a little to see my forteo leak sometimes too-like you said-a waste of an expensive medication you want every drop!

20 replies

Add to the discussion

Search

Join

Connect

You