0 Recommendations
For a better understanding of the effects and benefits, please share:
Age started
T-score Prior to Forteo
T-score After Forteo
For a better understanding of the effects and benefits, please share:
Age started
T-score Prior to Forteo
T-score After Forteo
Please add any side effects. Thank you.
I have just started Forteo and would like to hear from others who are on it. I have severe osteoporosis have been on fosamax for 11 years. My scores are increasing, so my doctor wants me to use Forteo. Anyone out there with experiece with this method?
I started forteo when I was 52
Initial t-score: -3.6 (spine only)
t-score after finishing 2 years of forteo -1.6 hip and spine -0.9
I didn't have any side effects....
Dear Windblown, Have your Dexa scores remained the same? In other words, have you lost any bone mass since finishing the two years of Forteo? As for side effects, I seem to have less energy after one year on Forteo. I'll be 61 in Dec. and have noticed a real change in energy levels when I'm working outside (we live in the country) or building something (like putting up siding on our house!). I definitely tire sooner and have to take longer breaks throughout the day. Oh well. Anything not to end up in a wheel chair I guess! Michele
If bone loss continues after Forteo, is there an option to use Forteo again? For example, if we use Forteo in our 60's and find in our 70's that we have lost more bone, can we use Forteo again or is Forteo one time only in a lifetime use? Of course, there will be newer meds that will probably be much like Forteo.
Hi Heid: I just finished forteo in June, and won't have another dxa till next June, so I won't know if I'm maintaining my scores or not.
I started out with severe osteo -3.6 four years ago, and now my scores are -1.6 (hip) and -0.9 (spine) a tremendous improvement.
Good luck...
Hi Windblown, My dexas are all -3. something; I'm still hoping that my Jan. dexa scan will show something more positive. My endocrinologist said that the thinking is now that you stay on Forteo for two years, then several years of Fosomax or Actonel, see what happens, then go back on Forteo if needed for another two years. He also said that new drugs are being tested, so that this thinking may well change. Medicare generally does not cover Forteo, but hey! You can go broke, then Medicaid will cover you in a nursing home when your hip breaks and it can't be repaired! How's that for logic? Michele
Hi Sandi: I haven't been able to find a Dr that would let me take forteo more than once, but when I asked I was talking about trying to continue past the 24 mos. I don't know if you can take it-say 10 years later-or not. I did ask my insurance about it, and they said they won't pay for any treatment beyond the 24 mos because it's considered experimental.
Who knows, maybe this thinking will change. I would hope that this will be the case, but I just really don't know how this will work.
My son-in-law's mother took it for three years but she was on Medicaid and other assistance and I think the manufacturer gave her some of the Forteo because of her very low income. She is unable to take Actonel or Fosomax because of serious esophagus problems. I think she is one of the few who took it longer than the recommended 2 years. She also fell and fracture her spine in several places earlier this year. The nursing home care for that must of cost the state (i.e. the taxpayers) THOUSANDS of dollars as she was in the home for months. She is in her early 70s, a very poor eater, gets little to no exercise.
My first post here, so please excuse my lack of knowledge on some of this.
With all the discussion about Forteo (my endo is recommending it for me), can anyone tell me if there have been any long term studies done. I'm not sure when Forteo came on the market, so maybe there hasn't been enough time to do tests of this type.
If one increases bone by using Forteo, is there some data to indicate if the bone increase is permanent?
I was previously on Actinel--two years--and I believe I had a number of side effects. Pain seemed to increase and I also had significant eye inflamation. In addition, I developed an ulcerated esophagus. After all that, my second bone density score was probably no better than when I started. May have been worse, but because I had the second one done at a different facility than the first one, we really can't compare the scores. I have no history of osteo that I know of and I am postmenopausal.
Bottom line--if I am going to take another drug such as Forteo, it would be more reassuring to know that some long-term research has been done to see if it's worth the risk.
Forteo became available 2002. If you place Forteo in Search, you will have all the previous discussions.
My hip t-score was -3.0. I took Fosamax for 6 years until it stopped working. I was 65 when I started to take Forteo. I'm on my 13th month. I have had no side affects from it. I am going to have a new bone density done on Nov. 21. I'm being treated by a rheumatologist who put me on Forteo, but he doesn't specialize in ostioporosis. I'm going to see an endocrinologist who does, sometime in Jan ( a cancellation), she's at Columbia Presbyterian, Dr. Elizabeth Shane. I have found it very difficult to find the right kind of medical care. I've seen podiatrists, neurologists, neurosugeons, et al; I live 90 miles from NYC and I have pretty good insurance, but it's been very difficult to find the right kind of doctor. I'm still working, so I'm only using Part A of Medicare (hopitalization).
I have no idea if i've been making bone. I think I have been, but who knows. I'll know more when I find out my new scores.
In October 2006 I had three compression fractures. The bone density test showed in the lumbar spine a T score of -4.89 and a Z score of -2.69. The left hip was a T score of -3.14 and a Z score of -2.06. I also started Actonel at this time. In June of 2007 I had a vertebroplasty for one of the fractures.
I had a bone density test done October 2007 and it showed in the lumbar spine T-score of -5.2 and a Z score of -2.9. The left hip was a T-score of -3.14 and a Z score of -2.03.
Because the scores were worse, I stopped Actonel and started Forteo in February 2008. In December 2008, I fractured a rib scraping the ice off my car windows. I had another bone density test November 2008 and the lumbar spine T-score was -5.03 and a Z score of -2.64. The left his was a T score of -3.35 and a Z score of -2.18.
I'll keep on the Forteo and hope the numbers improve more after the two years are up. I have had some leg cramps but I always had leg cramps.
Candy
This will be my first post and I have just gave myself my 8th Forteo injection. After I "self combusted" in October (while sitting quietly on a chair), I had a CT which showed 4 compression fractures in my Lumbar Spine and a T-Score of -3.7 on my Bone Density. The Doc decided to go with Forteo because of my "young" age - 54. I note increased back discomfort since starting the injections (but I had stopped Calcitonin a few days prior because of a huge misconception that Calcitonin wasn't helping my pain much). Back on Calcitonin but still have more back pain than I have had in months. However, as long as I have my microwave and my Magic Bag, I'll stick with the Forteo. I'm counting on it!
I am 66 and had been on Fosamax for 6 years. In July, 07 my Lumbar T score was -3.3. I began using Forteo in February, 08. In December 08, DXA scan (same machine as before) showed T score of -3.6. this means no change or slight decline over 9 months of Forteo. MY Endocrinologist has no explanation. I am continuing with the shots. I called Eli Lily who gave no answer except to state that Forteo is shown to be effective 96% of the time. I also do resistance training and walking. When I began Forteo, I experienced severe stomach pain but Zantac has reduced it considerably and I have to be careful with my eating. I have no back pain. Just had a spine x-ray to check for stress fractures. Don't have results yet.
Hi Michelle,
Medicare does not cover Forteo? That is disturbing news. I saw a rheumatologist, and she claimed that Medicare covered injections, including Forteo. Now I had better do some checking, as I plan to retire in June and go on medicare. I have to call my regular doc and see if he got her letter. She recommended I be switched from Fosamax to Forteo. My spine was -4.2 and hip was -3.9, plus I've lost 2-1/2" of height.
Tom
I have been doing the injections for a year now and had my dexa scan this month.. I went from a -3.8 to a -3.2 so I've seen improvement.. she wants me to continue for the next year and then do boniva injections or reclast afterwards.... I am nervous about doing either of those things...
As regards Medicare coverage for Forteo, I can add only this small bit of information which I recently learned, and which may be relevant. I read recently in the NYT that coverage decisions are made regionally, not nationally. So, there are some regional differences as to what is covered. The case in point was with a technology called Cyberknife, a type of highly targeted radiation treatment. It is considered "experimental" by some regional boards and therefore is not covered. As I recall, this lack of coverage affects 17 states. So, it may be that Forteo falls into this category, but I don't know that.
NolaMarie
Thank you for that info Nola Marie. Since I'm in Wisconsin, I'd better check on whether Forteo is covered here. The rheumy that told me is was covered was in MN.
Tom
Tom, I live in Florida so I'm not positive how things work in your state. My guess, it will be similar. When you have medicare, you have choices. You can get a medicare complete, sometimes called a medicare advantage plan. They cover dr visits, hospital, outpatient service, with detuctables and copays. Most also have drug coverage. Every company is different. Some you pay a specific co-pay with forteo and some you pay 25% or 33% of forteo until you hit the donut hole which you will pay full price for a month or two. After you reach the catastrophic stage which you will, you will only pay 5%. You will also have a choice of having just medicare or medicare with a supplement, sometimes called a medigap policy. If you go with this I recommend a Rx plan which is usually not too expensive which works in the same way as the drugs in the previous plans I mentioned although there is usually a starting yearly detuctable. No matter what route you choose to go, each plan will have a formulary and you need to check it for any drugs you take for each company will be different. There are so many plans which you can find through medicare.gov. Make sure you give yourself enough time to go through them all. I hope this helped.
Add to the discussion