taape
08-06-2006, 03:37 PM
What are you doing for osteoporosis treatment after you have finished the 2 years on Forteo? I've been recommended for bisphosphonate therapy but after doing some initial research about those medications I'm not to anxious to use them. Also, what percentage of bone density improvement did you get while on Forteo?
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stonesc
08-06-2006, 04:53 PM
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. Endocrinologist wants to put me on Actonel now. I too am concerned about the side effects I've been reading about from this drug. I have an upcoming appointment with a doctor at Duke University who is one of the few doctors in the country who specializes in osteoporosis in men. All the literature and research out there is geared to women. I'm going to share with him my concerns about Acotonel and bisphosphonates in general.
taape
08-06-2006, 05:48 PM
Thanks for posting. If you come across any information for women there could you let me know. I don't know if your allowed to post the address of the clinic or not but I could look it up.
Main my concern whether female or male is that the medication stays in the bones for up to 10 years which isn't good especially if it causes side effects like bone pain. It seems that I will always need treatment to increase or maintain my bone density so I'm thinking this over carefully. Women have the added complication of decreased estrogen to worry about erroding bone density.
Main my concern whether female or male is that the medication stays in the bones for up to 10 years which isn't good especially if it causes side effects like bone pain. It seems that I will always need treatment to increase or maintain my bone density so I'm thinking this over carefully. Women have the added complication of decreased estrogen to worry about erroding bone density.
CrohnieToo
08-06-2006, 08:38 PM
Yes, Stones. PLEASE do let us know what the Endo at Duke has to say. I'm into my 12th month on Forteo but already wondering about what to do when my 24 months is up! I had one infusion of pamidronate prior to starting the Forteo and had assumed I would go back to that but given the latest info on the necrosis of the jaw .... I'm not so sure that is the way I'm gonna wanna go after all!
taape
08-06-2006, 10:46 PM
Chronie Too,
Yes, jaw necrosis is enough to scare me away.How long did your infusion take? I'm being told that I'd be given Boniva and the infusion takes 15-30 seconds. Just like given you other medication. Did you have any side effects the same day or within a few days?
Yes, jaw necrosis is enough to scare me away.How long did your infusion take? I'm being told that I'd be given Boniva and the infusion takes 15-30 seconds. Just like given you other medication. Did you have any side effects the same day or within a few days?
CrohnieToo
08-07-2006, 12:43 PM
Well, I had IV pamidronate. 60 mg. It was started as a 2 hour drip but I experienced some very mild tingling at the lips and wrists so the drip was slowed to a 4 hour drip. It was uneventful other than that.
Now, 24 hours later I did experience some flu-like symptoms. However, I was at Mayo Clinic in MN for several days and there are people there from all over the world. I had the infusion at Mayo. What I experienced were CHILLS, the queasies, not quite nausea, and some intermittent, traveling aches. They lasted about 8 hours or so. I was feeling better before we got home (12 hour drive) and was fine the next day. (Other than some morning heartburn from the Wendy's chili we ate an hour before we got home). So - were the flu-like symptoms a delayed reaction from the pamidronate or a virus I picked up whilst traveling? Who knows. It wouldn't stop me from having another IV pamidronate infusion - but the necrosis risk .... THAT just might stop me! Given the mild tingling during the 2 hour drip phase tho I doubt I would be willing to "do" the short 15-30 second Boniva. And, "if" I "do" do the IV pamidronate again I think I would opt for the 30 mg infusion every 3-4 months rather than the 60 mg every 6 months.
I've kinda got my hopes pinned on this strontrium ranelate, Protelos is it? I'll be watching that as my "time" gets closer. And I've got my Endo keeping tabs on it!
Now, 24 hours later I did experience some flu-like symptoms. However, I was at Mayo Clinic in MN for several days and there are people there from all over the world. I had the infusion at Mayo. What I experienced were CHILLS, the queasies, not quite nausea, and some intermittent, traveling aches. They lasted about 8 hours or so. I was feeling better before we got home (12 hour drive) and was fine the next day. (Other than some morning heartburn from the Wendy's chili we ate an hour before we got home). So - were the flu-like symptoms a delayed reaction from the pamidronate or a virus I picked up whilst traveling? Who knows. It wouldn't stop me from having another IV pamidronate infusion - but the necrosis risk .... THAT just might stop me! Given the mild tingling during the 2 hour drip phase tho I doubt I would be willing to "do" the short 15-30 second Boniva. And, "if" I "do" do the IV pamidronate again I think I would opt for the 30 mg infusion every 3-4 months rather than the 60 mg every 6 months.
I've kinda got my hopes pinned on this strontrium ranelate, Protelos is it? I'll be watching that as my "time" gets closer. And I've got my Endo keeping tabs on it!
taape
08-07-2006, 10:24 PM
Chronie Too,
Thanks for telling me about your experience. Do you think the 15-30 second infusion hits your blood stream too quick and might cause problems or bad side effects? Is that why you wouldn't want to do it that way? I wonder why I'm not scheduled for a longer time for the medication to be delivered in my system. Good question that I will ask my doctor. Also, I need to find out the amount of the dose - another good question. Why did you only have one infusion?
I have my mind set on continuing Forteo long enough until the PTH1-34 nasal spray gets FDA approval. Today the infusion center called saying that my insurance denied the doctor's order but I think they will in fact approve it with documentation sent from the doctor. I just can't figure out what to do except consider my options for a while.
Thanks for telling me about your experience. Do you think the 15-30 second infusion hits your blood stream too quick and might cause problems or bad side effects? Is that why you wouldn't want to do it that way? I wonder why I'm not scheduled for a longer time for the medication to be delivered in my system. Good question that I will ask my doctor. Also, I need to find out the amount of the dose - another good question. Why did you only have one infusion?
I have my mind set on continuing Forteo long enough until the PTH1-34 nasal spray gets FDA approval. Today the infusion center called saying that my insurance denied the doctor's order but I think they will in fact approve it with documentation sent from the doctor. I just can't figure out what to do except consider my options for a while.
CrohnieToo
08-08-2006, 10:20 AM
Well, Boniva is a newer bisphosphonate than pamidronate (Aredia) which may have to do w/the short infusion time. I'm not too interested in doing such a short infusion time for any bisphosphonate simply becuase I did experience that very mild tingling at the lips and wrists at the 2 hour drip rate. I don't know that the tingling really meant anything at all but since I did experience it and Mayo quickly responded to my mention of it I would just naturally be leery of having any medication of the same class infused in such a short time as they are recommending for Boniva. That's just me. I'm just a patient, not a doctor. But since I'm the one who gets to experience the good, the bad and the ugly of any medication we try .... I'm just not a real brave soul when it comes to medications!
CrohnieToo
08-08-2006, 10:42 AM
I'm sorry, taape, I forgot you had asked why I had only the one pamidronate infusion.
I asked how to treat my osteoporosis when I was NOT willing to risk my intestines and stirring up my Crohn's disease w/Fosamax or Actonel. My ob/gyn mentioned there was an IV infusion a couple of times a year I could consider or Forteo had just been approved 2-3 months earlier. I had just started on an immunosuppressant for the Crohn's disease and was rather scared to start another new med at almost the same time. Six months later I was at Mayo and asked their Endo what he suggested. Same thing: IV pamidronate or Forto. I opted to go w/the IV pamidronate and had that first infusion at Mayo. However, when I got back home and finally saw an Endo here, she said not to start Forteo or a bisphosphonate until my PTH was below 30 and my vitamin D higher. Both were in normal ranges so that had me somewhat confused but I started the high dose of vitamin D she suggested. So I was on the high dose vitamin D for a year when we got a new Endo locally, the Endo I was going to was a hour's drive one way. This new Endo kept me on the high dose vitamin D but suggested I start the Forteo. Since I had had no improvement on the vitamin D and had in fact lost more ground on just the vitamin D I was more than ready mentally to start the Forteo! I've pretty much told the results of my Forteo experience in other posts.
Oh - the other thing, in between switching Endos I attended an osteoporosis seminar put on by a hospital in the next town and hosted by an orthopedic surgeon (not the best choice of professions I thought). During the question and answer when I mentioned my IV pamidronate infusion he insisted it must have been part of a clinical trial. Hells bells, my ob/gyn knew more about what was available out there for treating osteoporosis than this hosting orthopedic surgeon!!!!! However, as it turned out my ob/gyn wasn't sure if I "could" have the IV infusion done locally and where or if I would have to drive 2 hours to U of MI for it.
I asked how to treat my osteoporosis when I was NOT willing to risk my intestines and stirring up my Crohn's disease w/Fosamax or Actonel. My ob/gyn mentioned there was an IV infusion a couple of times a year I could consider or Forteo had just been approved 2-3 months earlier. I had just started on an immunosuppressant for the Crohn's disease and was rather scared to start another new med at almost the same time. Six months later I was at Mayo and asked their Endo what he suggested. Same thing: IV pamidronate or Forto. I opted to go w/the IV pamidronate and had that first infusion at Mayo. However, when I got back home and finally saw an Endo here, she said not to start Forteo or a bisphosphonate until my PTH was below 30 and my vitamin D higher. Both were in normal ranges so that had me somewhat confused but I started the high dose of vitamin D she suggested. So I was on the high dose vitamin D for a year when we got a new Endo locally, the Endo I was going to was a hour's drive one way. This new Endo kept me on the high dose vitamin D but suggested I start the Forteo. Since I had had no improvement on the vitamin D and had in fact lost more ground on just the vitamin D I was more than ready mentally to start the Forteo! I've pretty much told the results of my Forteo experience in other posts.
Oh - the other thing, in between switching Endos I attended an osteoporosis seminar put on by a hospital in the next town and hosted by an orthopedic surgeon (not the best choice of professions I thought). During the question and answer when I mentioned my IV pamidronate infusion he insisted it must have been part of a clinical trial. Hells bells, my ob/gyn knew more about what was available out there for treating osteoporosis than this hosting orthopedic surgeon!!!!! However, as it turned out my ob/gyn wasn't sure if I "could" have the IV infusion done locally and where or if I would have to drive 2 hours to U of MI for it.
taape
08-08-2006, 08:47 PM
Chronia Too,
Thanks for answering my questions. I have enough Forteo for the next 2 months so I have time to make a decision about the Boniva IV. I got some information in the mail today from Rioche that I'm going to read through. I wish the PTH1-34 spray was approved. I can't even find where the clinical trial is being done. I don't know if I would be a candidate or not. plus some patients get a placebo which means zero medication for the length of the trial. I'll let you know what I decide.
Thanks for answering my questions. I have enough Forteo for the next 2 months so I have time to make a decision about the Boniva IV. I got some information in the mail today from Rioche that I'm going to read through. I wish the PTH1-34 spray was approved. I can't even find where the clinical trial is being done. I don't know if I would be a candidate or not. plus some patients get a placebo which means zero medication for the length of the trial. I'll let you know what I decide.
CrohnieToo
08-09-2006, 12:03 PM
Well, good luck, taape! Please do keep in touch and keep us informed!! I'll be in your situation just a short 10 months after you so I'm going to know what you decide and how it works out!!!
snowflake11
02-13-2007, 11:50 PM
hi taape. you still lurking around? i just found this thread - i see its several months later now. how are things going and what's your status? i'm in the position of choosing between the boniva iv and forteo. thanks for any update you could give.
taape
02-14-2007, 11:25 PM
SnowFlake11
I've been using Calcium and Vit D, and exercise only for the past 4 months. My doctor said that I'd be ok with this for up to 6 months after taking Forteo. I go back to the specialist in 2 weeks to see if I'm a candidate for a clinical trial of a PTH patch. I hope so.
I'm glad that I used the Forteo and would continue on if I could. I've decided against the Boniva IV or bisphosphonates - they scare me and my stomach could never take it. I'll be getting a DEXA scan in 2 weeks also. Forteo works so I'd think about that but it is time limited - 2 years but got me out of the severe range.
I've been using Calcium and Vit D, and exercise only for the past 4 months. My doctor said that I'd be ok with this for up to 6 months after taking Forteo. I go back to the specialist in 2 weeks to see if I'm a candidate for a clinical trial of a PTH patch. I hope so.
I'm glad that I used the Forteo and would continue on if I could. I've decided against the Boniva IV or bisphosphonates - they scare me and my stomach could never take it. I'll be getting a DEXA scan in 2 weeks also. Forteo works so I'd think about that but it is time limited - 2 years but got me out of the severe range.
snowflake11
02-15-2007, 11:12 PM
thanks taape - does the boniva iv bother the stomach too? i do hope you get approved for the patch. why is that different though, than taking the pth injection like in the forteo pen? if two yrs is the limit on forteo then isn't the patch an add-on to that 2 yr period limit?