forteo

Call Lilly
Hiker,

the manufacturer of Forteo, Lilly, will send you a free travel kit. The new one holds the pen for ten hours. Not perfect, but better than three!

Pincus

Traveling with Forteo
I've been taking Forteo for a year and have traveled overseas. I pack it in the travel kit from LIlly and put that kit with a blue ice pack in an insulated lunch bag. That has kept it cold for more than 12 hours.

Re: FORTEO


Just started Forteo about 3 weeks ago. No problems for the 1st 2 weeks them continuous leg cramps...feels like a charlie horse. I go to the gym every day and it is getting more and more difficult to jog on the treadmill. My legs feel heavy and tired. I'll just keep going and hope that it will eventually go away. No other side effects.

Forteo
At 50 I've just been diagnosed with severe osteoporosis in my spine. My hips have osteopenia since I am a runner. I have not been on Fosamax and my doctor is recommending Forteo due to the severity. 48% loss in 2 years.

My prespcription arrives tomorrow.

My biggest concern (other than possible side effects) is what to do when travelling. I travel on a fairly regular basis. How do you keep it refrigerated? What about disposal of needles while travelling?

Anyone have any suggestions? Experiences?

Thanks

Judy

Lilly will provide a travel kit which keeps the pen at the proper temperature for 10 hours.

I have not yet traveled with the pen, and like you, am collecting information.

My plan is to save the used needles and pack them carefully in my checked luggage to dispose of at home in the Sharp's container. Don't think this will be a problem because these are not syringes.

Let's hope someone weighs in here with more information.

Pincus

forteo leg cramps
in response to forteo leg cramps, i have experienced those and muscle cramps and joint pain in all my body. i've been off for a week and the cramps have subsided. has anyone had a similar experience?

Looks like there are several threads on here that are Forteo-related but will post here because looks like this is the biggest. I've been on Forteo for about 2 1/2 months.

I'm a 48 year old male who was diagnosed w/ pretty significant (I forget the numbers) osteoporosis (esp. in the spine) about 5-6 years ago. I started on Actonel and was showing good improvement in bone density for first 3 years. Then in last 2 years I started to slide backwards, to the point where endocrinologist treating me recommended I stop Actonel and start Forteo, probably for 18 months.

Took about 2 months to get insurance approval etc and now I'm doing the injection every day. Was having headaches for first couple of weeks but no longer. I do believe my appetite has increased since being on it.

Main incident I've had was a bit of a bloody injection about 2-3 weeks in. I looked at the pen immediately after and there was a small streak of red (ie., blood) in the solution near the needle end. Called Forteo Customer Care and they told me to stop using that pen. They sent me a voucher to take to a local pharmacy which was good for a new pen. The process was actually a little lengthier than that but they did in fact ensure I received a new pen at no cost. I've been told that getting blood in the pen is in fact quite rare and I don't know if anyone else has had a similar experience.

Should I take Forteo?
I am a very active, healthy 55 yr old lady who was just given the bad news that I have Osteoporosis. My hips are -3.7. I have always eaten well, exercised, and I have never been overwight. I don't like taking medications, I would rather stick with natural remedies. My Doctor is telling me I need to take Forteo. My concerns are long and short term side effects. I found this site and see there are a lot of younger people with the same problem. Can any of you tell me how you are doing and if the Forteo is helping?

Thanks,

jld

Also wondering about trials
I am also wondering about trials and what happens after two years. I can't take the Fossas or Evista-types but went into menopause at 42 post chemotherapy and sever osteoporosis soon followed losing estrogen. I'm only 53, and after one year on Forteo, I have only added 13 percent to my spine. Zip on hips. Seeing as how we are finding folks with degenerating jaws on Fossamax now, I am seeing a rheumatologist about what to do. It doesn't seem to me to be worth a potential risk (to me maybe a possible coincidental recurrance of my cancer showing up in bones etc.) to take it for a second year (??) if I can't find anything to bump up my bones or stop bone loss after the second year. I am also surprised that we aren't in a trial or anything, too, since it's only been in use, per my gyn, for a couple of years, and side effects of Fossamax didn't show up til now. Anyone have any luck w/ addtional info about trials?? I'd love to know. I'm wondering what rheum. will say. Thanks. Interesting to see how it's affecting people differently. I'm uncomfortable being a guinea pig without being in a trial.

Re: forteo
Also , I have a relative who is a professor at Yale and she did a lot of research for me , so I am going to continue to take Forteo .....

[/quote]

Hi this is Sue, I just posted about going to a rheumatologist because of the limitation of staying on this drug. Since you had someone do research for you, can you share anything about what they found? I can't find anything other than a limited research group and trial and was wondering why we weren't in one. Thanks!!

Re: Forteo
My latest Dexa scan shows an improvement in bone mass of 9% in the femural neck and a 16% increase in the lumbar spine. Have never had any side effects.[/quote]

I had 13 percent increase in spine. Did your doctor consider yours good after one year? I've had mixed reactions. Thanks, Sue

Re: Forteo
>> sharp pain (on and off) in my liver area.
Has anybody had these symptoms? Any stomach problems other than nausea? What about memory loss or "thick brain"?
Two months ago I was diagnosed with celiac disease and many food allergies. My diet is VERY limited and it seems that since I started with Forteo, my digestive system is overly sensitive.

I had breast cancer 4 years ago. I had been taking Evista for over 2 years but I had to discontinue it b/c of the cancer. I had been taking Actonel for 4 years, but probably due to the celiac disease, it was NOT doing anything and my bones were worst.<<

Marlene,

I don't know if you are checking this forum anymore, but if you are, I am in a similar situation (side effects and breast cancer history). I wondered if you'd finished the two years and whata you did. I stopped temporarily after one to talk to a rheumatologist. -Sue

Forteo Use
I just came across this form and thought I would provided what little information I personally have to share with you.

I have been using Forteo since January 2005 after dreadful side effects from Fosomax, Actinel, and Evista - flu like symptoms actually. Who wants that? I agreed to start Forteo after checking up on it and the studies. I felt that my situation (hip -2.58 and spine -4.15) warrented starting its use. I have also started using bio-identical compounded hormones (Triest/Progesteron). I have felt great and absolutely no side effects. I guess I am one of the lucky ones after reading some of the postings in this forum.

I just did my Dexa test and should have the results Monday. I haven't been a good patient and starte weight-lifting due to my work schedule and trying to complete my Master's, my time is used from 5:15 AM to 5:10 for work and 6:00 to 10PM for studies. I think I'll move dinner to AFTER exercising. I know exercising is a must. Hopefully there is a significant improvement and I can either stop now or what until January 2007 (the maximum usage time) to stop.

Because both Forteo and the bio-identical compounded hormones build bones, not just stop the loss, I feel I have found the right program for me. That is the key point, I guess. Whatever is right for you is what you should go for. I don't know that this information helps anyone or answers any questions, but I did want to let those reading this forum that there are some good results.

Forteo used for a year+
Hello, all!
My mother is 82 and has been on Forteo since March 2005. She has had no more spinal compression fractures since then. She was having fractures and cracks almost yearly despite Fosamax and other meds. She now has many vague symptoms that may or may not be related, but we are considering stopping for a while to check it out. The drug hasn't been on the market long enough to identify the true range of effects, in my humble opinion:

Muscle spasms/pain: Had a a couple intense days of it at the start, then again when off of it because treatment had to be interrupted for a couple of days.

Dizziness. She was already somewhat dizzy most of the time before, but it's worsened. She did not have increased dizziness, as the literature states can happen, when she started the Forteo. Her vertigo is complicated by poor posture from the previous spinal fractures (before Forteo) and weakness that worsened every time she had a break and was bedridden for weeks.

Chest tightness: Had one episode recently 5 min. after receiving her injection - felt severe, but not exactly painful. Couldn't walk. Thought she was dying. Lasted about 20 minutes. No problems found by on-site nurse right after it was over. Her heart stress test a few days later was clear. A scary medical mystery.

Fatigue: She also has fibromyalgia, but the fatigue increased right after starting it and thru the last year. She now has about 50% days when she's too tired to got to a Dr appt or walk farther than 50 feet at a time. Before Forteo it was about 20% like that.

Trembling: She has had about 5 days in the last 6 months when she trembled and was very wobbly all day, felt weak and shaky inside herself as well. This is completely new and her MD thinks it may be a mild nerological problem that requires a specialist to diagnose. Explanation TBD.

Finally, we have no idea if Forteo could be the culprit, but about 1 week after starting Forteo last year, she had a tiny stroke in the artery to one eye and lost eyesight in that eye permanently. She had a thorough workup for every possible related condition and they found nothing. She has NO stroke risk factors, other than age and HRT (stopped after the stroke). No high BP or cholesterol, no heart or artery disease, no sign of other previous silent events in the brain, etc. The concensus of her many specialists was to stay on the Forteo since we know she needed it and the risk seemed very low of another stroke event. Still many wondered if there could be a relationship and the drug is too new to know. It was reported to the drug company.

I think my mother is a good example of the case where the unknown risks are worth it for at least the first year. The research shows most of the benefit happens then, anyway. So even stopping now she has much improved bone strength.


A Concerned Daughter

forteo and dizziness
I have a vestibular illness - actually bilateral failure, total deafness on one side and loss of vestibular nerve on the other. That makes me one dizzy coot. Therefore, I wonder if, about the person's mom, age and vestbiular function may have to do w/ dizziness. I'll let you guys know what the rheum. thinks. At -3.2 and adding 13 percent after a year on Forteo, I don't know. I might wait a little while, even though I know that if I fall, it's dangerous. Since I only have another year, I want to wait as long as possible. Oddly, my mother in law was here. After seven years on Fossamax, she has vertebral stress fractures. So everyone's different......

Just Finished Two Years of Forteo
I am a 58 year old male. I just concluded two years taking Forteo. Always took the drug before bedtime. Only side effect was occasional cramping in legs. Research shows people see the greatest increase in bone density during the first year of taking the drug. The increase is less the second year. I had the opposite results. My greatest increase was the second year. I travel quite a bit. I always used the travel pack provided by Eli Lilly with success. On the question of what to do if you leave your pen out overnight, call Lilly. I did that once. They'll ask about the room temperature and length of time it was out. I was told my pen was o'kay and to keep using it. Next for me is Actonel. I'm hoping my experience with it will be as good as mine with Forteo.

stenosis
CHARCOK

Oddly enough, after 6 months of using Forteo I too developed lumbar stenosis. Within that period of time I began walking bent over and lived with pain. It was time for a wheel chair but I opted for surgery; it has been 1 year, 2 months and I feel that I have regained 90% movement. Nerve damage in my right leg causes discomfort some evenings but I am thankful for my surgeon. I have begun taking Forteo again and pray that the stenosis in the rest of my spine does not react...if that was a reaction. Concensus among the physicians/surgeons with whom I deal do not feel that the stenosis was a result of the Forteo. You may want to consult a surgeon; my recovery if a success story so I'm told.

forteo
has anyone using Forteo had the cost covered by Medicare? Or free from drug co?

cost of forteo
I was wondering about cost too. My mom is 83 and just told (after hip surgery, c-diff and staff infection, etc. etc. now 5 weeks in hospital) that she needs it. She can't stand due to pain in feet caused by (MRI shows) arthritis, osteo, and bone fractures in both ankles.

She is on medicare and tri-care (military retirement funding); the pharmacy said they can't tell me if tricare covers it or not until they have a prescription and she is still in the hospital using their drugs. Any idea about all this???

I took Forteo for six weeks. Started getting shins splint like pain after the third or forth week. Then knees started to hurt. I stopped the forteo about 10 days ago, but my knees still hurt and the shins still flair up. Are you better now?