Starting FORTEO tomorrow and so nervous.

Posted by vkmov @vkmov, Jan 24 1:42am

Any good experiences out there? Worried about serious side effects.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

I have been told there is no use doing Tymlos or Forteo after Evenity because there is little left to do. Also, Evenity is more anti-resorptive in later months so I wonder if it affects effectiveness. Basically I have been told is you can do Evenity after Tymlos or Forteo but not the other way around.

As for Tymlos or Forteo or Evenity after a break from bisphosphonates, I have been told that is possible but there is a reduction in effectiveness. I read 50% reduction in effect in hip and 40% in spine but I have seen numbers all over the place.

Jump to this post

@windyshores this is good to know! Thank you! The right sequecing as you pointed out makes sense!

There will be times, however, for some patients who need anabolic therapy after a course of bisphosphonate. A reduced effect is still good and may well keep fracture at bay.

REPLY
@vkmov

Thank you SO MUCH for the positive vibes! I've read all the posts here and the web re negative side effects which basically has left me in this state. So today I decided to ask for all the positive stuff so I really appreciate your note and advice!

Jump to this post

@vkmov, we all have different concerns due to our health history, what might cause one to be concerned may not weigh in on your decisions. It's so helpful to hear success stories while we're working thru this together. I think you'll be less stressed once you proceed. Best wishes!

REPLY

The best "side effect" is the mental relief you will feel knowing you are doing something to increase bone density and decrease fracture risk. Before going on Forteo, I was a nervous wreck wondering whether I was continuing to deteriorate. Once I made the difficult decision and started taking Forteo, I finally had peace of mind and a relief from the constant worry.

REPLY

I just started Forteo in October. I was nervous too. The first shot was the hardest but it was easier than I thought. I take it at night because that's what the nurse suggested. It can make you dizzy for a few hours but, if you're sleeping then no problem. I haven't had any side effects so far. I also was told to let it sit for 5 - 10 min to warm up. The one time I didn't wait it stung quite a bit.
Good luck and I hope you get good results.

REPLY
@daphne17

I did Forteo for two years but I resisted it for about 2-3 years before that. Every specialist I saw (around 4) wanted me on it. I was reluctant. Then I had another fractured vertebrae--my third and I knew I had to do something. Those fractures can be very painful. The doctor who did my kyphoplasty said some of my vertebrae were like "eggshells". His words not mine. So I agreed to go on it. The Forteo wasn't as bad as I thought it would be. I did develop knee pain and my low back pain seem a bit worse but I managed. Once I ended the Forteo, my knee pain went away and my low back wasn't quite as bad. My bone density improved while I was on it. I was then put on Prolia which I have now been on for about 7 years. As for the injections, I didn't find them bad at all. It just became part of my daily routine.

Jump to this post

You sound just like me. I finally gave in after my third compression fracture in Sept. How soon after your break did you have the kyphoplasty? Did it help? I read that it may put pressure on the good vertebrae and cause them to fracture so I'm reluctant to do it.

REPLY

Sounds like there probably is no real need to add another positive story--but I though I might as well. I had spinal surgery about a year and a half ago--and since I had osteoporosis and type 1 diabetes (50 years +) my doctors were concerned about bone healing. They decided to put me on forteo for several months before the surgery and about a year after it. The surgery went very well--and I healed exceptionally well. I was nervous about forteo side effects too--but I experienced none of them. I found the injections less bothersome than the insulin injections I had taken for years--and now the puncturing needed for my glucose monitor and pump. Very small needle. I also took/take once weekly aldendronate sodium (fosomax?) . My last bone scan showed that I had shifted from mildish osteoporosis to osteopenia. I recently fell on the ice--and wonder if the fact that I broke nothing could be credited to the medicine.

REPLY
@debsinwa

You sound just like me. I finally gave in after my third compression fracture in Sept. How soon after your break did you have the kyphoplasty? Did it help? I read that it may put pressure on the good vertebrae and cause them to fracture so I'm reluctant to do it.

Jump to this post

I have had several fractures but only had the kyohoplasty on my last one because I didn't know about the procedure until a few years after my first ones. I had it done on my last vertebrae about 3 weeks after the fracture. I had to have an MRI first and then get on the schedule. My understanding is that you can have the kypho done up to 6 months after the fracture. The pain is gone as soon as the procedure is done and it also prevents loosing height. If I had known about kyphoplasty, I could have saved myself months and months of pain. I did have one complication from the kypho--and this is NOT common. I have scoliosis which made the procedure challenging and my lung was punctured as a result. I fully recovered from that. If I had another fracture, I would not hesitate at all to proceed with a kyphoplasty. It's done outpatient with light anesthesia and you go home the same day although in my case I had to stay in the hospital. This was nearly 10 years ago and I have not had any more fractures since so I don't believe the procedure put any undo stress on my other vertebrae. The pain relief is so worth it.

REPLY

@debsinwa I did not have any kyphoplasties after any of my 7 fractures. I am glad it helped @daphne17 and her experience is pretty convincing. To play devil's advocate, my orthopedist did not recommend it. He told me that the long term outcome would be the same with or without kyphoplasty and it was mainly for pain relief. I did go through months of pain but am fine now and can even walk 10 miles. I was concerned about leakage of the cement, the brittleness of the kyphoplasty (like glass) between other fractures and I also have scoliosis. I have lost 3 inches. There are many arguments pro and con. I do sometimes wonder if I should have had some!

REPLY
@daphne17

I have had several fractures but only had the kyohoplasty on my last one because I didn't know about the procedure until a few years after my first ones. I had it done on my last vertebrae about 3 weeks after the fracture. I had to have an MRI first and then get on the schedule. My understanding is that you can have the kypho done up to 6 months after the fracture. The pain is gone as soon as the procedure is done and it also prevents loosing height. If I had known about kyphoplasty, I could have saved myself months and months of pain. I did have one complication from the kypho--and this is NOT common. I have scoliosis which made the procedure challenging and my lung was punctured as a result. I fully recovered from that. If I had another fracture, I would not hesitate at all to proceed with a kyphoplasty. It's done outpatient with light anesthesia and you go home the same day although in my case I had to stay in the hospital. This was nearly 10 years ago and I have not had any more fractures since so I don't believe the procedure put any undo stress on my other vertebrae. The pain relief is so worth it.

Jump to this post

Thank you for your reply. It's so helpful to have others experiences to base our decisions.

REPLY
@debsinwa

Thank you for your reply. It's so helpful to have others experiences to base our decisions.

Jump to this post

I waited three weeks to do kyphoplasty thinking I’d deal with it. If I ever have another fracture I will do kyphoplasty immediately, so as not to deal with pain and, more importantly be able to exercise again. My dr. described it like setting a broken arm. Not being able to exercise is huge as you lose strength and muscle mass quickly. I recommend kyphoplasty 100%! I did not lose any height, which is very important.

REPLY
Please sign in or register to post a reply.