I’m not quite as low, but getting closer. I may start Tymlos and hope I can tolerate it and continue to exercise a lot. I do not want to take any of the follow up drugs. My endocrinologist suggested that I might just be able to stay on Tymlos for life. He’s not in favor of six months on and six months off. I’ve had previous soft tissue sarcoma, so scared to stay on, but Tymlos/Forteo seem like the only drugs I would consider. Any help here on long term use?
Are you on any medications now for osteoporosis, or are you still trying to decide what to do? My latest DEXA scores were very bad, but I'm fearful and undecided about what to do. My Dr recommends a bone builder, but said I must agree to following up with Reclast or Prolia. I'm not happy about either of those two choices. I have daily pain from fibromyalgia and just want to put my head in the sand about taking any meds after reading the side effects. Part of me wonders just how effective any of the drugs will be for me vs side effects.
Are you on any medications now for osteoporosis, or are you still trying to decide what to do? My latest DEXA scores were very bad, but I'm fearful and undecided about what to do. My Dr recommends a bone builder, but said I must agree to following up with Reclast or Prolia. I'm not happy about either of those two choices. I have daily pain from fibromyalgia and just want to put my head in the sand about taking any meds after reading the side effects. Part of me wonders just how effective any of the drugs will be for me vs side effects.
No, I took fosamax and actenol in my 50s (I'm 70) and they gave me Barretts Esophagus. My numbers kept getying worse.
Then I took Forteo for two years with a different dr who was extremely arrogant and insisted I do Prolia afterwards. I refused it and left him. I did nothing for 6 years. My dexascan showed my bones went right back to where they were before Forteo!! I started seeing a new dr who has been badgering me to do Reclast and swears I can put up with 2 weeks of Flu. At this point I'm scheduled to see her July 1st and will probably need a tooth extracted so Reclast is out. She's going to be mad.
I also did the EchoLight scan which found my spine score was WAY better than the Dexascan but worse than my hip score. My last Dexascore in December showed stable.
I've heard so many horror stories about both of those drugs - Reclast and Prolia - but I've also had friends who did not have any side effects.
These drugs, once started, are for life. So I'm hesitant to begin the whole series again!!!
I'm so frustrated and torn.
No, I took fosamax and actenol in my 50s (I'm 70) and they gave me Barretts Esophagus. My numbers kept getying worse.
Then I took Forteo for two years with a different dr who was extremely arrogant and insisted I do Prolia afterwards. I refused it and left him. I did nothing for 6 years. My dexascan showed my bones went right back to where they were before Forteo!! I started seeing a new dr who has been badgering me to do Reclast and swears I can put up with 2 weeks of Flu. At this point I'm scheduled to see her July 1st and will probably need a tooth extracted so Reclast is out. She's going to be mad.
I also did the EchoLight scan which found my spine score was WAY better than the Dexascan but worse than my hip score. My last Dexascore in December showed stable.
I've heard so many horror stories about both of those drugs - Reclast and Prolia - but I've also had friends who did not have any side effects.
These drugs, once started, are for life. So I'm hesitant to begin the whole series again!!!
I'm so frustrated and torn.
i know of no one who has experienced two weeks of flu symptoms from
Reclast. I experienced less than 48 hours of flu like symptoms the first time i had reclast—-and one treatment reversed my osteoporosis to the extent that i didn’t need any further treatment for 3-4 years. Unfortunately, the second time the hospital pharmacy failed to respect my allergists strong recommendation that i was given brand name Reclast. Instead, i was given a generic manufactured in India by a company “positioned” in midwest. i tend to be highly allergic to preservatives and should not have accepted the generic—my insurance company had approved brand name Reclast. Even though i had an allergy reaction (my allergist researched allergic reactions to Reclast and found very few (i reported my reaction to the FDA) ….i had huge improvement in my osteoporosis. Another desirable factor re Reclast is that it is normally prescribed only once annually. i would not hesitate to have another Reclast infusion—-
No, I took fosamax and actenol in my 50s (I'm 70) and they gave me Barretts Esophagus. My numbers kept getying worse.
Then I took Forteo for two years with a different dr who was extremely arrogant and insisted I do Prolia afterwards. I refused it and left him. I did nothing for 6 years. My dexascan showed my bones went right back to where they were before Forteo!! I started seeing a new dr who has been badgering me to do Reclast and swears I can put up with 2 weeks of Flu. At this point I'm scheduled to see her July 1st and will probably need a tooth extracted so Reclast is out. She's going to be mad.
I also did the EchoLight scan which found my spine score was WAY better than the Dexascan but worse than my hip score. My last Dexascore in December showed stable.
I've heard so many horror stories about both of those drugs - Reclast and Prolia - but I've also had friends who did not have any side effects.
These drugs, once started, are for life. So I'm hesitant to begin the whole series again!!!
I'm so frustrated and torn.
No, I took fosamax and actenol in my 50s (I'm 70) and they gave me Barretts Esophagus. My numbers kept getying worse.
Then I took Forteo for two years with a different dr who was extremely arrogant and insisted I do Prolia afterwards. I refused it and left him. I did nothing for 6 years. My dexascan showed my bones went right back to where they were before Forteo!! I started seeing a new dr who has been badgering me to do Reclast and swears I can put up with 2 weeks of Flu. At this point I'm scheduled to see her July 1st and will probably need a tooth extracted so Reclast is out. She's going to be mad.
I also did the EchoLight scan which found my spine score was WAY better than the Dexascan but worse than my hip score. My last Dexascore in December showed stable.
I've heard so many horror stories about both of those drugs - Reclast and Prolia - but I've also had friends who did not have any side effects.
These drugs, once started, are for life. So I'm hesitant to begin the whole series again!!!
I'm so frustrated and torn.
You may want ro verify your belief that Reclast once started “is for life”. After the first time t was given Reclast, i was medically advised i didnt need any osteoporosis treatment for years (based upon DEXA results)
However, i have repeatedly told by numerous drs that “prolia cant be stopped” However, i know of two people who stopped prolia (with medical advice) and switched to eventity
i know of no one who has experienced two weeks of flu symptoms from
Reclast. I experienced less than 48 hours of flu like symptoms the first time i had reclast—-and one treatment reversed my osteoporosis to the extent that i didn’t need any further treatment for 3-4 years. Unfortunately, the second time the hospital pharmacy failed to respect my allergists strong recommendation that i was given brand name Reclast. Instead, i was given a generic manufactured in India by a company “positioned” in midwest. i tend to be highly allergic to preservatives and should not have accepted the generic—my insurance company had approved brand name Reclast. Even though i had an allergy reaction (my allergist researched allergic reactions to Reclast and found very few (i reported my reaction to the FDA) ….i had huge improvement in my osteoporosis. Another desirable factor re Reclast is that it is normally prescribed only once annually. i would not hesitate to have another Reclast infusion—-
It's an ultrasound of the hip and spine that many doctors prefer to the DexaScan - often numbers are considerably lower. They exist all over the US and in Europe. Might be coming to Canada.
Are you on any medications now for osteoporosis, or are you still trying to decide what to do? My latest DEXA scores were very bad, but I'm fearful and undecided about what to do. My Dr recommends a bone builder, but said I must agree to following up with Reclast or Prolia. I'm not happy about either of those two choices. I have daily pain from fibromyalgia and just want to put my head in the sand about taking any meds after reading the side effects. Part of me wonders just how effective any of the drugs will be for me vs side effects.
Maybe your rheumatologist and your endo can communicate about what’s best for YOU. Also, it’s my understanding that rheumatologists often prescribe osteoporosis treatment. I know how it feels to be in a “rare patient population” that often needs very well thought out treatment plans AND at times numerous specialists consulting with each other to make best decision for you. i have not been to Mayo yet (have upcoming appt) but its my understanding that Mayo excels at case coordination of complex cases needing input from numerous specialists. Wishing you all the best
It's an ultrasound of the hip and spine that many doctors prefer to the DexaScan - often numbers are considerably lower. They exist all over the US and in Europe. Might be coming to Canada.
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Are you on any medications now for osteoporosis, or are you still trying to decide what to do? My latest DEXA scores were very bad, but I'm fearful and undecided about what to do. My Dr recommends a bone builder, but said I must agree to following up with Reclast or Prolia. I'm not happy about either of those two choices. I have daily pain from fibromyalgia and just want to put my head in the sand about taking any meds after reading the side effects. Part of me wonders just how effective any of the drugs will be for me vs side effects.
No, I took fosamax and actenol in my 50s (I'm 70) and they gave me Barretts Esophagus. My numbers kept getying worse.
Then I took Forteo for two years with a different dr who was extremely arrogant and insisted I do Prolia afterwards. I refused it and left him. I did nothing for 6 years. My dexascan showed my bones went right back to where they were before Forteo!! I started seeing a new dr who has been badgering me to do Reclast and swears I can put up with 2 weeks of Flu. At this point I'm scheduled to see her July 1st and will probably need a tooth extracted so Reclast is out. She's going to be mad.
I also did the EchoLight scan which found my spine score was WAY better than the Dexascan but worse than my hip score. My last Dexascore in December showed stable.
I've heard so many horror stories about both of those drugs - Reclast and Prolia - but I've also had friends who did not have any side effects.
These drugs, once started, are for life. So I'm hesitant to begin the whole series again!!!
I'm so frustrated and torn.
I'm so fed up with all of this.
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1 Reactionpls explain numbers above. thnks
i know of no one who has experienced two weeks of flu symptoms from
Reclast. I experienced less than 48 hours of flu like symptoms the first time i had reclast—-and one treatment reversed my osteoporosis to the extent that i didn’t need any further treatment for 3-4 years. Unfortunately, the second time the hospital pharmacy failed to respect my allergists strong recommendation that i was given brand name Reclast. Instead, i was given a generic manufactured in India by a company “positioned” in midwest. i tend to be highly allergic to preservatives and should not have accepted the generic—my insurance company had approved brand name Reclast. Even though i had an allergy reaction (my allergist researched allergic reactions to Reclast and found very few (i reported my reaction to the FDA) ….i had huge improvement in my osteoporosis. Another desirable factor re Reclast is that it is normally prescribed only once annually. i would not hesitate to have another Reclast infusion—-
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Helpful -
Hug
1 ReactionWhat is “EchoLight Scan?
You may want ro verify your belief that Reclast once started “is for life”. After the first time t was given Reclast, i was medically advised i didnt need any osteoporosis treatment for years (based upon DEXA results)
However, i have repeatedly told by numerous drs that “prolia cant be stopped” However, i know of two people who stopped prolia (with medical advice) and switched to eventity
Thank you so much for this.
It's an ultrasound of the hip and spine that many doctors prefer to the DexaScan - often numbers are considerably lower. They exist all over the US and in Europe. Might be coming to Canada.
Maybe your rheumatologist and your endo can communicate about what’s best for YOU. Also, it’s my understanding that rheumatologists often prescribe osteoporosis treatment. I know how it feels to be in a “rare patient population” that often needs very well thought out treatment plans AND at times numerous specialists consulting with each other to make best decision for you. i have not been to Mayo yet (have upcoming appt) but its my understanding that Mayo excels at case coordination of complex cases needing input from numerous specialists. Wishing you all the best
Do you know if EchoLight is done at Mayo? For years i have been having DEXA done at Cleveland Clinic fl on their newest machine.