Forteo side-effects

hi, I just found this site. I am going to a new endo and he wants me to stop my Boniva and take Actonel for 2 months and then he may put me on Forteo. My bone loss with each scan every year is getting a little worse & worse. What is the comment about Belly fat???  Does this increase your belly???  Did you have any side effects. I am scared to death about taking this drug. Injections??? Yikes I know nothing about injectiny myself>>>>How do you measure the correct amount out etc.  What about side effects..What should I expect.  Thanks for any and all info you can provide.

Hi cm81256, welcome and thanks for your question.  I didn't have any side effects from Forteo other than greatly increased t-scores.  I've heard some say that it causes some belly fat, but I didn't have that problem.  Also I injected into my thigh instead of the stomach.

The injection is extremely simple.  You don't have to measure anything.  The medication comes in a pre-metered dose pen, that uses a really tiny needle (size of an eyelash) and since the dose is already measured through the pen, you just pull the plunger and then inject it.  I rarely ever felt the needle and it's nothing like a regular syringe.

The medication must be refrigerated and you use it for 28 days and then dispose in a sharps container, and start on a new pen.

If you have any other questions just ask.

Pam,

Thanks so much for all the info I now feel a little less nervous when the day comes. The unknown is a bit scary. Also I have read about people getting a racing pulse or flu like symptoms. You always hear the bad sometimes and not the good. or maybe you just pay more attention to bad news than good. I am so happy for your gain in the bones maybe with alot of luck I may one day get a little bone back. I am 53 and my T scores are not good at all my spine is now Negative 3.0 and my hip 2.7 in a nut shell my endo says I am a good candidate for Forteo so hopefully I will not have a hard time since you did not and had such great results. I have taken Evista, actonel, boniva and now actonel once again. Lots of calcium with Vit. D and am so frustrated with it all. I exercise with weights, until a month ago I had torn my labrum (shoulder) and am now going thru PT to try and heal that up and then my Dexa came back worse than before. I found this site by accident and everyone on it seems so nice. Thanks so much for your nice words and I am sure I will post again.  Take care nice lady.

Hi Jean, welcome and thanks for sharing your story, we're soo glad you've joined us and found us as well.  If you ever need any advice on how to use the site just email me, I'd be happy to help make it easier.

I took Forteo and did really well on it without any negative side effects.  The injection is so simple and nothing like a regular injection with a syringe.  Forteo comes in a pre-metered dose pen as I'm sure you are aware of.  If you'd like to see a video on how easy it is to do just email on that as well.

Remember the negative stories get much much more coverage, on the Internet, than the positive do, so keep that in mind. Those doing well don't have the time or reason to post since they are probably out living their lives with very few problems.  Also, for some reason us humans gravitate to the negative, which I hope will change real soon.

People who experienced belly flab from Forteo found that injecting it into the thigh didn't cause this.  I personally think it's easier to inject into the thigh anyway, easier to see, hurts less than stomach injection, even though the injection rarely hurts and if it does it so minimal.  Don't compare it to blood draws or other injections it's nothing like that and there's really only three simple steps:  clean area with alcohol wipe and wait to dry, check pen for any particles--because if you see this you need a new pen.   You then attach needle, pull out the plunger, insert the needle about a 1/16th of an inch into the skin and push the plunger and that's it.  I can't tell you how many people worry needlessly about this injection and find once they do it how simple and almost pain free it is.  You can only use the pen for 28 days *even if* there is some med left in the cartridge, and dispose in a sharps container.  Most Drs have a service where you can take your used pens so they'll dispose them.  If your Dr doesn't have this all cities have medical waste places you can go to on certain days of the month for this.

Don't forget to contact me about the video, if you're interested and anything else you can think of.

I hope you do as well as I did.  I went from -3.6 spine to normal bone density (spine) in one year after starting it.  I didn't have an initial hip score to compare to, but I'm now in the osteopenia range there, and it had to have been worse than what it is now.

Also join us any time at our Question of the Week, which you can find here.  We'd love to hear from you and all others!!  We take great pride in our ability to provide helpful info to help all members so they can deal with their individual issues with osteoporosis or osteopenia from our moderators all the way up to our upperlevel staff.

One of my favorite quote's and one I try to live by, is from Thich Nhat Hanh: "Life is so hard, how can we be anything but kind?"

Pam (community moderator/leader)

Sorry but I made a mistake, this response is for both Jean and cm81256. I hope both of you get the notice of a reply from me, since both of your replies were very important to me!!

Pam

I will complete my 2 years on Forteo in November and I have to decide on which drug to take to keep my bone gains. I I did very well in my 1st year dexa.)  My endo originally recommended Actonel. I spoke to her about a week ago and she told me that she had a patient wo lost all her gains after taking Forteo so she doesn't want me to take it.  I mentioned the new drug Denosumab and she told me that there were no studies on Denosumab and women who had taken Forteo, so that ends that until there are some studies done.  I don't want to lose my new bone and maybe there will be studies done soon.  It looks like it's going to be Fosamax again for me.  I took it for 6 years before I started to take Forteo.  I can't take Evista, which she mentioned as another possibility because I had a blood clot when I was 36.  I'm disappointed.  I wish I could keep taking Forteo.  I very fortunately have not had any side affects, either belly fat or anything, only new bone.  My left hip was my worst number, but last November it was ostiopenia range.  Anybody hear anything like that about Actonel?

Hi Raven, I haven't heard about this finding with Actonel or Denosumab, but it's true I don't think any studies have been done with the combination of Forteo and Denosumab.

Have you talked to any one else that's going from Forteo to Denosumab to see what their Drs say about this?

I'll have to let you know what I find out, since I wanted to take Denosumab when/if it becomes available.

If you tolerated Fosamax, then I suppose it would be the logical thing to take, but I can see where you might be disappointed.

Let us know if anything changes and if you go ahead with the Fosamax.

Good luck...

Hi Pam,

I haven't talked to anyone else about this.  I don't know about any studies done on a larger scale about Actonel after Forteo.  My endo is Dr. Elizabeth Shane.  I'm probably her oldest patient and she is really acting as a consultant in a way.  My rheumatologist thinks she's excellent and I haven't yet spoken with him about this new information.  It's more complicated than I thought it would be.  Even my response is more complicated.  Here, I thought I would run to get into a study, but, I don't want to take a chance and lose bone by trying a drug that hasn't been studied with Forteo.  I'm not prepared to lose my new bone.  

I hope you have retained your new bone.  I look forward to hear about it.  I think we take our bone density's at around the same time, mine will be soon, late October.

Hi Raven, oh yes she's a very good Dr.  I see mine this week and will find out what the story is on her end.  I don't know if my dxa will be this week or in a couple of weeks, but the last time I discussed this option my mineral metabolism Dr. seemed agreeable with denosumab.  The only problem is when we had the discussion it was no where near approval so I don't know if she's changed her mind.  My Dr. is also a research doc at a osteo clinic, so she may have new info I'm not aware of on all of this.

I'll let you know and good luck to you on your dxa.  I know how you feel you don't want to loose "any" gains you made after 2 years on Forteo.

Take Care

Hi Pam,

Please let me know what your Dr says about Denomusab.  Dr shane also said it would be very expensive and she wasn't sure insurance co's would pay for it because it's so new and expensive. 

I also think I confused Reclast with a serm.  I don't think it is.  That's the other drug besides Fosamax that she spoke about.  If I decide I'll make certain that my kidneys are tested.  I'm also increasing my D3 intake.  Good luck with your scores, your doc and all other health things.

Hi Raven I'll definitely let you know what I find out.  Reclast "is not" a SERM.  Evista is a SERM which I've been taking on and off because I've had to have several surgeries in the last 9 months and you have to stop Evista around surgeries, prolonged bed rest and plane travel due to the blood clot problem.

Reclast is a infused form of bisphosphonate like Actonel, Fosamax, and Boniva, with slightly different side effects since it doesn't travel through you stomach, so the gi problems should be much less than the oral doses of bisphosphonates.

My Dr stays on top of all the new studies plus she's very involved in new ones as well, so hopefully she'll be able to give me some info I can pass along to you and I'll ask if there is any study on Forteo/Denosumab that hasn't been published yet.

We are both very lucky to have such incredible Drs with great reputations and many journal articles and research studies under their belt.  I'll get back to you no later than this weekend if she has news about all this, so just hang in there.

Take Care,

Pam

Hi there, sorry your wife didn't see any improvements after 2 years of Forteo.  You mentioned that they checked her PTH and phosphorus levels, so I'm wondering if they looked for any other secondary cause of bone loss that could explain her non response to Forteo?

Here's a list of some of the disorders that can cause osteoporosis from the National Osteoporosis Foundation.  If she were to have any of these they could be treated and hopefully that would slow the bone loss any possible increase her scores.

If she doesn't have a secondary cause for this, hopefully the Evista and Miacalcin will help.  It's really hard to commit to two years of expensive treatment and then have these results.  Unfortunately we all don't respond to these meds in the same way, but hopefully Evista/Miacalcin will help.

Good luck and let us know how she does