Using bone builders only

Posted by tkdesign @tkdesign, Apr 8 7:35am

Has anyone only taken tymlos or forteo and not followed up with an anti resorptive? I cannot tolerate any of that class of drug. I wondered if it's just a given you lose the bone you gain on the former, or that is not always the case. Or has anyone found being on HRT helped to sustain bone increases?

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

I was on tymlos for 2 years. I am not a person to take medications but it was a lifesaving necissity. All studies and expereinces that I have been shown indicated that all bone gains will be lost if PTH therapy is not follwed up with an antirepsortive. I sympathize with your concerns about tolerating bisphonsantes -- I was put on actonel ( which leaves the body quickly so may be a good option for you). I am very sensitive and had a rapid powerful response and in less than six weeks my CTX had dropped and came into line. Some peole need 3 - 6 months. However, for me that is what was needed; I was taken off and now will begin Evenity.
My six weeks on Actonel was not without serious issues - inflammatory infections and side effects that still linger. I worked with an Ayuvedic phsyician to take an herbal to protect my gut although I did never had GERD. I started the herbal 2 weeks before starting the bisphosphante. We are all different biologically. I suggest you build a team to guide you - and go through all the necessary labs to make sure you are addressing imbalances. Please Read Grest BOnes by Dr DcCOrmick - it is a eyeopener to understadng this disease and building a vision of healing and hope. I send you postive energy to navigate yourself through this process for the best possible result.

REPLY
@dmshope

I was on tymlos for 2 years. I am not a person to take medications but it was a lifesaving necissity. All studies and expereinces that I have been shown indicated that all bone gains will be lost if PTH therapy is not follwed up with an antirepsortive. I sympathize with your concerns about tolerating bisphonsantes -- I was put on actonel ( which leaves the body quickly so may be a good option for you). I am very sensitive and had a rapid powerful response and in less than six weeks my CTX had dropped and came into line. Some peole need 3 - 6 months. However, for me that is what was needed; I was taken off and now will begin Evenity.
My six weeks on Actonel was not without serious issues - inflammatory infections and side effects that still linger. I worked with an Ayuvedic phsyician to take an herbal to protect my gut although I did never had GERD. I started the herbal 2 weeks before starting the bisphosphante. We are all different biologically. I suggest you build a team to guide you - and go through all the necessary labs to make sure you are addressing imbalances. Please Read Grest BOnes by Dr DcCOrmick - it is a eyeopener to understadng this disease and building a vision of healing and hope. I send you postive energy to navigate yourself through this process for the best possible result.

Jump to this post

I need to make a correction to the above --- PTH must be followed up with another medication - it could be antrepsrotive like a bisphosphonate or EVENITY. THere is good research that Evenity can follow PTH. However, Evenity then must be follwed up with a drug to maintain its gains. Hope this clarifies my message.

REPLY
@dmshope

I was on tymlos for 2 years. I am not a person to take medications but it was a lifesaving necissity. All studies and expereinces that I have been shown indicated that all bone gains will be lost if PTH therapy is not follwed up with an antirepsortive. I sympathize with your concerns about tolerating bisphonsantes -- I was put on actonel ( which leaves the body quickly so may be a good option for you). I am very sensitive and had a rapid powerful response and in less than six weeks my CTX had dropped and came into line. Some peole need 3 - 6 months. However, for me that is what was needed; I was taken off and now will begin Evenity.
My six weeks on Actonel was not without serious issues - inflammatory infections and side effects that still linger. I worked with an Ayuvedic phsyician to take an herbal to protect my gut although I did never had GERD. I started the herbal 2 weeks before starting the bisphosphante. We are all different biologically. I suggest you build a team to guide you - and go through all the necessary labs to make sure you are addressing imbalances. Please Read Grest BOnes by Dr DcCOrmick - it is a eyeopener to understadng this disease and building a vision of healing and hope. I send you postive energy to navigate yourself through this process for the best possible result.

Jump to this post

Could you please share why you had to add a third drug (Evenity) since the Actonel apparently did lock in your gains from Tymlos?

REPLY

Hi @tkdesign, Clinical studies in the past had shown that without an antiresorptive to follow Forteo treatment, the bmd gained from it were mostly lost in 1-2 years. On average, women lost at a faster rate than men did. If someone has uncontrolled secondary cause(s) of osteoporosis, the loss might be faster. There was a link/graph posted by @gently a few days ago that shows rate of bone loss after cessation of various osteodrugs.

One can certainly use HRT or SERM (Selective Estrogen Receptor Modulator) as an antiresorptive after an anabolic. The question then becomes whether or not their effects are adequate, and what's the optimal duration of their use. I think we have some members here used raloxifene (Evista) after Forteo for maintenance. @teb on this forum has been using HRT x6-7 years since finishing Forteo treatment.

REPLY
@dmshope

I was on tymlos for 2 years. I am not a person to take medications but it was a lifesaving necissity. All studies and expereinces that I have been shown indicated that all bone gains will be lost if PTH therapy is not follwed up with an antirepsortive. I sympathize with your concerns about tolerating bisphonsantes -- I was put on actonel ( which leaves the body quickly so may be a good option for you). I am very sensitive and had a rapid powerful response and in less than six weeks my CTX had dropped and came into line. Some peole need 3 - 6 months. However, for me that is what was needed; I was taken off and now will begin Evenity.
My six weeks on Actonel was not without serious issues - inflammatory infections and side effects that still linger. I worked with an Ayuvedic phsyician to take an herbal to protect my gut although I did never had GERD. I started the herbal 2 weeks before starting the bisphosphante. We are all different biologically. I suggest you build a team to guide you - and go through all the necessary labs to make sure you are addressing imbalances. Please Read Grest BOnes by Dr DcCOrmick - it is a eyeopener to understadng this disease and building a vision of healing and hope. I send you postive energy to navigate yourself through this process for the best possible result.

Jump to this post

@dmshope, could you please share the rational of using Actonel for a short term (6weeks?) after Tymlos, and before the start of Evenity? What is reason for not going from Tymlos to Evenity directly? Thank you!

REPLY

Great question. I have secondary osteoporosis. Tymlos improved my spine but not my hip or forearm; this is sometimes the result. I had 8 stress fractures in both feet before and early on in tymlos therapy. My foot bones were/ are in crises and did not improve on tymlos and my BTM for osteoblast activity are too low. This indicated needing bone building asap. Bisphosphantes do not build bone - although since they reduce bone loss,they are often looked at as allowing the natural porcesses of the body to build bone. They are good drugs for what they do; they just have to monitered frequently and handle side effects as necessary. Take as gentle a drug as possible for your body. Please note; there is alot of new research about drug sequencing and what drugs blunt the effects of other drugs. Prolonged use of bisphospshante can blunt the effect of Evenity; so learn about that of that drug in your future. I dont know your situation but read read read. Get the Great BOnes book and start to learn to manage your recoevery as best you can. Of course throuugh labs, diet and eliminating imbalances are critcal. I had to go through genetic testing for bones diseseases. Its been a journey.

REPLY

Further to above, so I answer your question completely, I had to be on drug after tymlos and needed something that would leave the body quickly - actonel. At that time we did not know how much bone building i still needed so flet that we would try Actonel and see if that would suffice. It did not but it do the job needed to reduce CTX.

REPLY
@dmshope

I need to make a correction to the above --- PTH must be followed up with another medication - it could be antrepsrotive like a bisphosphonate or EVENITY. THere is good research that Evenity can follow PTH. However, Evenity then must be follwed up with a drug to maintain its gains. Hope this clarifies my message.

Jump to this post

I already tried evenity and could not tolerate it. I couldn't sleep at all. I got jaw and teeth pain within a month.

REPLY
@dmshope

Further to above, so I answer your question completely, I had to be on drug after tymlos and needed something that would leave the body quickly - actonel. At that time we did not know how much bone building i still needed so flet that we would try Actonel and see if that would suffice. It did not but it do the job needed to reduce CTX.

Jump to this post

What is CTX?

REPLY
@mayblin

Hi @tkdesign, Clinical studies in the past had shown that without an antiresorptive to follow Forteo treatment, the bmd gained from it were mostly lost in 1-2 years. On average, women lost at a faster rate than men did. If someone has uncontrolled secondary cause(s) of osteoporosis, the loss might be faster. There was a link/graph posted by @gently a few days ago that shows rate of bone loss after cessation of various osteodrugs.

One can certainly use HRT or SERM (Selective Estrogen Receptor Modulator) as an antiresorptive after an anabolic. The question then becomes whether or not their effects are adequate, and what's the optimal duration of their use. I think we have some members here used raloxifene (Evista) after Forteo for maintenance. @teb on this forum has been using HRT x6-7 years since finishing Forteo treatment.

Jump to this post

Is the bone loss worse than it was before you started the drug? That is a huge fear...like Prolia is supposed to be awful for that. I am already on HRT, started early to help prevent more bone loss than I already had. Is Raloxifene something special vs. other forms of estrogen?

REPLY
Please sign in or register to post a reply.